Anxiety and MS

It is not often that I feel “lucky” as a person with MS, however, I do feel extremely fortunate to have never had to endure a mood disorder as a symptom of my disease. For a very brief time when I was younger, I suffered with periodic depression as a symptom of premenstrual syndrome, and that was enough to give me the tiniest glimpse into the horror of a mood disorder. When I was diagnosed with MS and learned about the variety of symptoms that I could encounter, my fear of depression and cognitive dysfunction far outweighed my fear of losing mobility.

Since depression is a well-known symptom of MS, I was shocked to learn at the 2014 ACTRIMS-ECTRIMS Meeting that more people with MS have an anxiety disorder than have depression. A study of 7786 adults with MS showed that 54.1% had “excessive symptoms of anxiety,” while 46.9% had “excessive symptoms of depression.”

It turns out that the prevalence of anxiety disorders in people with MS is roughly three times the prevalence of these disorders in the general population. More specifically, statistics show that among people with MS:

  • 18.6% have general anxiety disorder at any time (compared to 5.1% of people in the general population)
  • 10.0% have panic disorder (vs. 3.5% in general population)
  • 8.6% have obsessive compulsive disorder (OCD) (vs. 2.5% in the general population)
  • Social anxiety is also higher in people with MS than the general population.

In addition, more women with relapsing-remitting MS (RRMS) than men with RRMS are affected by anxiety disorders. People with secondary progressive MS were more likely to have symptoms of anxiety than those with other disease types.

Anxiety has received only a fraction of the attention depression has received as a disorder overall. However, it has been shown that anxiety in combination with depression, rather than anxiety or depression alone, are associated with increased thoughts of self-harm and more social problems. Despite the high prevalence in people with MS, as well as the potential risks when anxiety is combined with depression, the treatment or management of anxiety in MS has not been specifically studied. In my opinion, this is a problem, since MS symptoms can be made worse by the side effects of antianxiety drugs, which include: drowsiness and lack of energy, clumsiness, impaired thinking and memory loss, and slurred speech.

Another challenging factor is the difficulty faced by neurologists around diagnosing this disorder in their patients. There are a couple of reasons for this. People who are newly diagnosed with MS often exhibit symptoms of anxiety that may be transitory as they adjust to their diagnosis. More challenging is the overlap of symptoms between anxiety and MS. All of these extremely common MS symptoms are also symptoms of anxiety: pain, tremors, “buzzing” in their limbs, numbness, problems swallowing, tightness around the rib cage, sexual dysfunction and weak arms and legs.

What I would like to emphasize for anyone who is experiencing symptoms of an anxiety disorder or depression is that it is NOT your fault. People with these disorders can no more “pull themselves out of it” by “counting their blessings” or “looking on the bright side” than people in wheelchairs can get up and walk at will. If you are feeling any of the symptoms of these disorders, please seek professional help, preferably from a psychiatrist or other mental health professional who has experience treating people with MS.

Note: One very specific form of anxiety that was mentioned in the session was injection phobia, brought about when people have anxiety around self-injecting their MS disease modifying therapies. There has been some success in alleviating this using cognitive behavioral therapy. It is important to address injection phobia as soon as possible, as this reluctance to self-inject can lead to problems with adherence.
 

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Julie

Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.

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    75 Comments

  • theresafoss  Sep 11, 2014 9:14 AM
    I have some days when I hysterically cry.and feel sorry for MYSELF.
    I am not in pain; I just cry!
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    marshina  Sep 11, 2014 9:32 AM
    My anxiety started after 25 years with managing symptoms. My bladder is not trustworthy. Not only is it spastic but I created in my mind fear of anything that could happen. I told my neurologist that the only thing I thought was really progressing, like the speed of light, was my anxiety. I was leery to walk, the stiffness had set in. He convinced me to try Zoloft. Within a week I was walking around the block, climbing stairs, driving without hand controls. I couldn't believe how my fear was paralyzing me. Let it be known I still have accidents, even wearing pads. But i now know it's not the end of the world or my life.
  • Myra Loftis   Sep 11, 2014 9:37 AM
    I feel like the previous comment. Anxiety over....something is going to happen soon that will scare me and I will not make a good decision. Crying over nothing!! Spouse doesn't understand. Count my Blessings??? He says....I do, but something inside is wrong... I can't help cognitive issues, fatigue, and just feeling weak and plain stupid!!! But one day at a time. Thanks....
  • Kyra   Sep 11, 2014 10:10 AM
    I relate to all of the aforementioned comments - particularly as I'm in training to start a new profession and am overwhelmed with the amount of information that I need to master. However, I've found a great short term cure for my anxiety.
    Place your palm underneath your nostrils and blow to discover which nostril is the strongest/most dominant/blowing the most air. Gently block that dominant nostril with your pointer finger and breathe slowly in and out of your open nostril 8 times. It helps to close the eyes. It automatically calms me down of the highest anxiety (and cures hiccups, too). I hope it works for you. If this makes you uncomfortable, placing both hands on your lower belly and simply breathing in and out of the belly with 8 deep breaths (eyes closed is a bonus) is also very helpful. So is feeling your feet on the ground.
    Anxiety is here, but we can meet it every single time.
  • LP   Sep 11, 2014 10:31 AM
    Even before I was officially diagnosed at 25, I suffered from anxiety and depression. I had a nervous breakdown at 23 (which, looking back, I can see was directly related to MS) and have been dealing with depression and anxiety and all of the fun trying to stabilize myself ever since. The best things for me are often the hardest to do: Stay committed to seeing a therapist (after a year or two, the weekly appointments can be wearing). Get enough exercise (the chicken and the egg problem: I feel better when I exercise, but I have to get the energy to do it--and with MS and GAD and depression working against me, it's hard to get moving to do it). Treat myself with compassion (Type A, a little obsessive with perfection).
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    bellabueno77  Sep 11, 2014 10:53 AM
    I have been suffering from GAD for two years. I am undiagnosed (MS)and declining. Fogginess, fatigue, leg and arm weakness, numbness and tingling in hands feet face,loss of balance, i have significant vision changes almost as if I'm seeing from under the water at times. Gray cloudy vision at other times recurring conjunctivitis, difficulty swallowing constantly feeling like I'm being squeezed, uncontrollable crying, and off the charts anxiety because i have had several falls in the last six months. I have had lab work a ct scan my mri is scheduled for tomorrow. My pcp and nuerologist both have told me that it is highly probable that i have the disease. Articles like this shed so much light on things that have been going on and in retrospect things i have missed that may have alerted me sooner. I have been suffering from blinding migraines for two years which my nuerologist has told me is an early marker for young women and MS. I am in a great deal of pain daily, but I'm hopeful that my medical team will find do what they can help me. Although this morning i saw the PA because my Dr was out of town and left in tears. She told me that maybe just have too much yeast I my diet and that's where all these symptoms are coming from and advised me to begin a probiotic, drew blood, and gave me a righrefill for my recurring erythromycin and loratadine. And she also said...don't get worked up just wait for your test results. Meanwhile i am living everyday with these symptoms. The last thing anyone needs is someone,especially a medical professional minimizing what we feel. Anyway...i appreciate the info and support on this site. God bless everyone's effort to find a cure.
  • Avatar
    bellabueno77  Sep 11, 2014 10:58 AM
    I have been suffering from GAD for two years. I am undiagnosed (MS)and declining. Fogginess, fatigue, leg and arm weakness, numbness and tingling in hands feet face,loss of balance, i have significant vision changes almost as if I'm seeing from under the water at times. Gray cloudy vision at other times recurring conjunctivitis, difficulty swallowing constantly feeling like I'm being squeezed, uncontrollable crying, and off the charts anxiety because i have had several falls in the last six months. I have had lab work a ct scan my mri is scheduled for tomorrow. My pcp and nuerologist both have told me that it is highly probable that i have the disease. Articles like this shed so much light on things that have been going on and in retrospect things i have missed that may have alerted me sooner. I have been suffering from blinding migraines for two years which my nuerologist has told me is an early marker for young women and MS. I am in a great deal of pain daily, but I'm hopeful that my medical team will find do what they can help me. Although this morning i saw the PA because my Dr was out of town and left in tears. She told me that maybe just have too much yeast in my diet and that's where all these symptoms are coming from and advised me to begin a probiotic, drew blood, and gave me a refill for my recurring conjunctivitis erythromycin and loratadine. And she also said...don't get worked up just wait for your test results. Meanwhile i am living everyday with these symptoms. The last thing anyone needs is someone,especially a medical professional minimizing what we feel. Anyway...i appreciate the info and support on this site. God bless everyone's effort to find a cure.
  • Lois   Sep 11, 2014 11:04 AM
    I haved lived with depression and anxiety most of my life So thankful it is under control for now. Always wanderif and when I will not have control. Fatigue is my other problem. I have just started with leg pain, always something to learn to live with.
  • Dee Middleton   Sep 11, 2014 11:05 AM
    Very interesting I was diagnosed with MS three yrs ago at the age of 57. However I have had chronic acute anxiety with panic attacks that started in my 20's. Still ocd but managed with meds. Interesting correlation.
  • Meg84  Sep 11, 2014 11:20 AM
    This article really hit close to home. I've been struggling with anxiety (and depression off and on) for as long as I can remember. It's gotten really bad in the last year and I've become additionally frustrated b/c I've had a lot of difficulty finding a therapist or psychiatrist to help.
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    JenR  Sep 11, 2014 2:26 PM
    Four years diagnoses with MS. First time I've ever said that online. I get this GAD we all speak of all so well. Feels good to know others panic over public, shots, symptoms, and accidents, to the point of isolation. years of each day feeling little more limited, judged, scared, and alone, sometimes for absolutely no reason. To cry excessively! to be OCD with no energy. I'm not giving up on finding meds that work for my MS or anxiety. Just feel good to say something to people who get it, because this much more than getting over it.
  • Celeste   Sep 11, 2014 2:38 PM
    Suffered from MS since at least 1999 when first lesions appeared on MRI. Began suffering from anxiety in 1997 which progressively became worse leading to a diagnosis in 2011 of severe anxiety disorder along with major depressive disorder, PTSD, and BPD. Finally, diagnosed in 2012 with MS. With dialectical behavior therapy, I am off of my anxiety meds, but still on anti-depressants. I believe the anti-anxiety medications exacerbated some of my problems with MS. But worse was the zolpidem that I took for ten years because I couldn't sleep. I am no longer taking it either, so I believe I am regaining some cognitive function. I hope that anyone suffering from anxiety or depression will seek help from a professional. If you suffer from MS as well, be proactive with your medications and know the side effects. Relapses and side effects can be confused and confusing. Keep a journal, and let your doctor know if new symptoms appear. For example, my blood pressure showed that I was prehypertensive. Rather than take a med for blood pressure, I discovered that my anti-anxiety meds and OTC supplements were causing my BP to be high. I am feeling much better and a lot less dizzy. Who knew?
  • Celeste   Sep 11, 2014 2:41 PM
    Suffered from MS since at least 1999 when first lesions appeared on MRI. Began suffering from anxiety in 1997 which progressively became worse leading to a diagnosis in 2011 of severe anxiety disorder along with major depressive disorder, PTSD, and BPD. Finally, diagnosed in 2012 with MS. With dialectical behavior therapy, I am off of my anxiety meds, but still on anti-depressants. I believe the anti-anxiety medications exacerbated some of my problems with MS. But worse was the zolpidem that I took for ten years because I couldn't sleep. I am no longer taking it either, so I believe I am regaining some cognitive function. I hope that anyone suffering from anxiety or depression will seek help from a professional. If you suffer from MS as well, be proactive with your medications and know the side effects. Relapses and side effects can be confused and confusing. Keep a journal, and let your doctor know if new symptoms appear. For example, my blood pressure showed that I was prehypertensive. Rather than take a med for blood pressure, I discovered that my anti-anxiety meds and OTC supplements were causing my BP to be high. I am feeling much better and a lot less dizzy. Who knew?
  • Avatar
    AndreaJulian  Sep 11, 2014 2:48 PM
    I also recently switched from Rebif auto-injectors to Tecfidera pills... I thought I was "overreacting" to having to press the button for the shot but now it makes sense! Family and friends did not understand my mental block but this anxiety connection makes me feel less defeated.
  • Anybeth   Sep 11, 2014 4:24 PM
    I'm fairly sure I don't have an anxiety disorder now (though there are some remnants of PTSD from before the MS diagnosis), but I think there are a few anxiety-related symptoms and some other pseudo-anxiety symptoms that my MS has caused. Maybe a couple times a month, I get sudden feelings of impending doom or great sadness, apropos of nothing. Even rarer, I get, dunno, impulse problems? Feeling like I <i>must</i> do this or that something (often that I shouldn't) or doom will ensue. Either of these would probably amount to an anxiety disorder if the episodes were more frequent. I have some coping methods and also a med I can take if these get too much for me.

    The things which aren't anxiety but look like it to other people have actually been more of a problem for me because it was up to me to figure them out and because it was maddening to have people to tell me I was anxious when I wasn't. First one I figured out was overstimulation. First neuropsych (surely noting how I found the noise of the computer fan very distracting) told me that it was like all my mental filters have been torn down, that probably I literally can't ignore stimuli. Like anyone whose senses are overwhelmed, eventually I can't take it and freak out. So I keep my place dim, I wear hats whenever I'm out, and I carry earplugs, just in case. And my stress level has dropped considerably.

    The other one I came across while browsing Wikipedia. Due to MS, I have acquired alexithymia. Literally, that means, "No words for emotion". I knew I had gotten problems recognizing emotion in both myself and in others (without obvious facial clues). I'm always getting better about that, broadening my emotional vocabulary, but what I didn't know (aside from the term for it) were the other things that go along with alexithymia. Like I may be unable to distinguish emotion and bodily function. While it's true that MS may be the direct cause of sudden anxiety, the same feeling can come from a full bladder and I might not be able to tell. So the first thing I do when I feel unexpectedly anxious is go to the bathroom. More often than not, that solves it.

    Third one was just... too big of demands. If people keep insisting I must do things that I absolutely can't, yeah, I'm going to break down and also get very scared when they're around. Acceptance did me a world of good there.

    What seems like anxiety isn't always and what is anxiety isn't always enough to amount to an anxiety disorder. I hate to think there may be MSers a lot like me being treated for anxiety disorders if what they really need are some earplugs and a hat. Or to go to the bathroom. Or to understand that "I can't do that" can be freeing.
  • Becky D.   Sep 11, 2014 5:33 PM
    I started treating anxiety this summer just like I treat other MS symptoms. It started when I said to my doctor "I have trouble with anxiety and I don't know where it's coming from" and we began a scrip that day. My life is better and this article is so validating...thank you for the research.
  • Angela   Sep 11, 2014 6:45 PM
    I am so relieved to hear this. I feel as though I'm going nuts. I KNEW why I felt anxious and why my depression waxes and wanes; but people just don't get it. I hate it when I feel down for no apparent reason . I feel guilty and I know I shouldn't, but I still do. I can't control it. I wish I could,. I fight these feelings every day. I've had MS since Dec 2005. It's just frustrating. Praying, cussing, screaming, isolation, exercise, ( which I frequently fight to find the strength for) music are just a few of the techniques I use to help myself through valleys. One minute at a time.
  • Debbie   Sep 11, 2014 9:39 PM
    I had my first anxiety "attack" in my late 20's prior to my MS diagnosis. Went to the hospital because I wasn't sure if it was a stroke or heart problem. Got numb in the lips, heart beating, etc. I was also a very anxious child due to family circumstances. Feeling left alone and fear of losing my mom after my father moved out. Anxiety over feeling the fear but never getting reassured properly because I couldn't say what I felt. Instead met with frustration or anger instead of compassion. Some boys just about molested me but I got out of the one boy's grip and ran away - never talked to anyone because I thought I'd get in trouble for being where I was. Was always afraid of getting in trouble… I was never abused physically - that wasn't it. I do remember a pretty upsetting spanking once, but only because it was not an immediate punishment. It was a "wait until mom gets home" kind of thing. And that causes a child a lot of anxiety. But when I had that first anxiety attack, it was treated with Xanax a couple of days later. And I loved Xanax, but only took it as needed after awhile. Diagnosed with MS only a few years later, I never made a connection. Just knew that having this type of disease was going to cause anxiety, never knowing what the next day would bring. Twenty-five years later, I am still mobile but not working at my career anymore. Not working, period. On SSDI. But there was all that anxiety while realizing I was slipping on the jobs and then losing them. Trying to get something going on my own now with some of my creative talents but it’s making me anxious too because I have so little energy and not sure I can get to a point where I’ll even make any money. Plus the real big problem right now is that my husband is having serious employment issues and I’m feeling like we could even lose the cheap apt. we rent. Over the last several years my family has been blown apart also. My father passed, and my brother and sister have always had issues with me one way or another most my life. (I was the black sheep - party girl with conservative siblings.) Now they're not even speaking to me over certain issues they’ve blown out of proportion. Then there’s my dad’s third wife who coincidentally also has MS but over time, with her choosing not to try any DMT, it got much worse than me. Then she just stopped wanting to see or talk to me after he passed. In fact, I was asked NOT to come to the house the day my dad died because I found out later… “she couldn’t handle me.” Anxiety??? I was shot in the heart that day. My closest friends…. well we all know what often happens there. Over time my anxiety combined with my depression becomes too overwhelming. I've been on a regimen of anti-depressants that address my anxiety as well, but until circumstances change or I learn how to deal with the pain better, my anxiety and depression will not lessen. And even with a therapist and psych I see for the meds, I cannot get them to quite grasp all of this in terms of how the MS applies to it all. Never helps when your therapist has to move on and leaves you hanging until a replacement comes along, then you have to start all over telling that person about yourself. This has just happened and I am at the point where I am crying every single day because the pain is unbearable at times. Forget the MS - I have lost almost everyone I’ve loved and feel anxious all day long just wanting to hear someone’s voice. Pathetic.
  • Sherri D   Sep 12, 2014 12:39 AM
    I get anxious a lot. I have panic attacks. Even with treatment, they are there.
  • Millie P   Sep 12, 2014 7:30 PM
    I am so glad I came across this article... I figured that on top of my MS, I was losing my mind.
  • Laurie   Sep 12, 2014 8:33 PM
    Just diagnosed 7 months ago have all your issues, hugs to all! Still cant get my insurance to take the next step...so frustrated, feel like no one wants to help me.
  • Laurie   Sep 12, 2014 8:33 PM
    Just diagnosed 7 months ago have all your issues, hugs to all! Still cant get my insurance to take the next step...so frustrated, feel like no one wants to help me.
  • Alejandro Garcia   Sep 13, 2014 5:08 AM
    I was diagnosed with rrms on 06/04/14 at the age of 23, I'm a male. Been admitted 5 times to the hospital for extremely severe exacerbations. My neurologist has zero answers for me other than to keep taking my medicines and hope for the best. I am in a wheelchair. I sleep about 3 to 4 hours a night, even with taking a strong sedative to help calm me down. My anxiety is getting stronger. My mood swings are pretty severe as well, to the point where I hurt my mother emotionally without intention. I'm really afraid at this point and idk what to do anymore. I need help but idk how or where to get it. I feel alone. All my parents tell me is to stay positive, to be happy that I'm alive, that there are worse things than MS, look on the bright side. Help.
  • Alejandro Garcia   Sep 13, 2014 5:12 AM
    I was diagnosed with rrms on 06/04/14 at the age of 23, I'm a male. Been admitted 5 times to the hospital for extremely severe exacerbations. My neurologist has zero answers for me other than to keep taking my medicines and hope for the best. I am in a wheelchair. I sleep about 3 to 4 hours a night, even with taking a strong sedative to help calm me down. My anxiety is getting stronger. My mood swings are pretty severe as well, to the point where I hurt my mother emotionally without intention. I'm really afraid at this point and idk what to do anymore. I need help but idk how or where to get it. I feel alone. All my parents tell me is to stay positive, to be happy that I'm alive, that there are worse things than MS, look on the bright side. Help.
  • Alejandro Garcia   Sep 13, 2014 5:12 AM
    I was diagnosed with rrms on 06/04/14 at the age of 23, I'm a male. Been admitted 5 times to the hospital for extremely severe exacerbations. My neurologist has zero answers for me other than to keep taking my medicines and hope for the best. I am in a wheelchair. I sleep about 3 to 4 hours a night, even with taking a strong sedative to help calm me down. My anxiety is getting stronger. My mood swings are pretty severe as well, to the point where I hurt my mother emotionally without intention. I'm really afraid at this point and idk what to do anymore. I need help but idk how or where to get it. I feel alone. All my parents tell me is to stay positive, to be happy that I'm alive, that there are worse things than MS, look on the bright side. Help.
  • capitolcarol   Sep 13, 2014 11:50 AM
    What makes me depressed is the loss of mobility. I used to be very active and I miss that part of my life. I am on Ampyra and am trying to follow their prescribed walking, although I have trouble with balance and coordination. I look very spastic when I try to walk and it is hard waiting at a crosswalk because then my anxiety starts up and by the tiime the green walk signal comes on my feet start the tremors when I step down,
  • Patti   Sep 13, 2014 8:33 PM
    I too have anxiety. It has recently become worse due to a deterioration in my condition. I would like to direct a comment to Alejandro that I I have also been given the "keep positive be happy to be alive" speech. That is a pat answer that really doesn't begin to express the compassion or understanding of the unpredictability and fear of the unknown that we experience with MS. I feel alone too. But you are not alone. We have each other and this support forum to express our feelings. Thank God for that. It is so encouraging to me to hear from all of you and know I am not imagining the physical challenges I face daily. I don't take anything for granted anymore. Each good moment. Each pain free hour is a gift. My biggest challenge now is to conquer the fear. To find peace and hope. Thank you all for having the courage to share your stories. You inspire me to keep pushing on.
  • senfinger  Sep 14, 2014 8:20 AM
    Had no idea my panic attacks could also be a symptom of my possible ms diag! Goodness. that and the depression I feel even as blesses as I am has me feeling that I am headed into an MS life! 12 yrs and no real answers yet. Maybe at least some validation for why I am hurting and tired and can't remember basic conversations. Should have results Tuesday!
  • mjfalend  Sep 16, 2014 6:48 PM
    If anyone wants to reach out to someone about Power Plate - Look at this link. http://www.lasplash.com/publish/fitness/break4-health-fitness-review.php

    It describes a place - www.break4health.com - with multiple locations and they are expanding all over the county. If you look for them: www.clinical.trials.gov you can find clinical trials that are going on with this.

    I am seeing my Neurologist on Friday to discuss Power Plate and also Medical Marijuana. It is legal in 23 states and DC and 3 more states are pending. It is legal in my state now and I use a vaporizer or edibles instead of smoking. Amazing how it cuts the pain AND I can see in the dark for the first time in 9 years! It may not give you your walking back, but if it cuts the pain, you can exercise more and get stronger!

    The best to everyone! Be well, learn to relax, and never stop moving!

    Marge - Chicago
  • Dan Ward   Sep 18, 2014 7:49 AM
    Suggestion for anxiety sufferers, and for stress relief overall: mindfulness based stress reduction (MBSR). Find a certified instructor in your area. Buy into the program; may seem a bit wacky and "earthy-crusty" to you at first, but lots of science and positive empirical evidence behind it. I've seen it work wonders. Does take practice and commitment.
  • Duncan Galbraith   Sep 18, 2014 10:04 AM
    I was diagnosed with MS thirty five years ago, and until a year ago decided to go on SSDI
    I worked full time for 23 years despite having MS battling through symptoms that made it very difficult to work. However, I finally decided to throw in the towel, so to speak, and work part time and start collecting disability.
    I tried some of the therapies for progressive MS, but side effects and no signs of definitive slowing of the disease I stopped treating the disease.
    Exercise, change in my diet, drinking LOTS of water is making me feel better. Depression-anxiety over whelming fatigue has eased.
    I have not dismissed nor will not try drug therapies specific to chronic progressive MS, but in the meantime what I am doing plus my deep faith in my Lord and Savior Jesus Christ will bridge the gap between now and the next effective proven drug for chronic progressive MS
    God Bless

    Duncan
  • Joshua   Sep 18, 2014 2:58 PM
    This is like a peek into my life. I deal with this daily. Thank you for this insight.
  • lpalmer4627  Sep 19, 2014 1:17 PM
    I agaree with Joshua. I too am dealing with anxiety daily. I realized it started after my diagnosis, thanks for the confirmation.
  • Orgna   Sep 22, 2014 12:20 PM
    I've learned so much about this disease that I sometimes just sat in awe. (not in a good way) Since I can deal with pain, my bladder will announce my pain level by voiding. If I'm having a nasty mirgrain, all control of my bladdler and lower intestines are gone. I will start to carry depends with me to control my embarssement, although, my co-workers know that I'm seriously ill and only push for me to see my doctor during bad mirgrains or to go home and call them to insure I made it home safely. I know some people aren't as bless as I'm. This is the time when your true friends show up and those that love you will show out.
  • Mascha Brautigam   Sep 24, 2014 10:53 AM
    Hi yes i have had depression and anxiety on and off for years.A few years ago i was diagnosed vwith mild MS and the neurologist told me i had it for years.I just do not know if the anxiety which i have mildly is connected to my MS?I have no treatments except i do take 1/4 of valium at night for my anxiety and more of a habit.I used to take it during the day but since i have stopoed i feel i have more energy,which is now a year ago.A lot of people say they have a recurring MS ir relapse.I do not know which one i have besides been told mild?
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    ccrumb  Sep 27, 2014 10:02 PM
    i too have alot of cognitive /mood disorders but my family dont understand. i will forget alot and have ocd,anxiety, mood swingsit feels likeno one understands. i feel like i have to keep explaining myself to everyone that sometimes im not meaning what they think im saying or acting like its just frustrating. the reason i chose to sign up for this is i need someone to talk to because i feel alone. i feel like this site will do that
  • hope2015  Oct 6, 2014 7:49 AM
    Small steps matter. YOU must make the time and take at least 15 minutes 3x a day to mentally relax: songs you love, a funny movie that causes you to laugh, a good book like 'Happiness Is A Choice', call a friend or relative, mix it up. Everyone has 15 minutes a day. Everyone! Exercise...it might not be how or like it used to be but something no matter how small matters before it becomes a big step. Adjustments help and matter! I went from feeling like my left foot then half of leg was 'asleep' to using a cane sometimes...now a cane, can't look around when I walk (balance) to a rollator - which is highly suggested! (never new what that was before!) A walker with wheels, brakes, seat if needed -I use mine for a pocketbook :) (Everyone is different I know but for me I need to start looking into a wheelchair /motorized something WE need to look at our lives in a different way and we can't expect others to understand, we didn't, and still have a frustrating time with our self. We are allowed to have a pity party at times (it can be wtf are you kidding me at times but we are human) but have a time limit. Life is just different (yes it's an understatement) we can and need to make a new path, it's just a new path, make it doable, make it worthwhile. Help someone else, I mean even all these posts were helpful, educate people nicely and slowly but do it, it might be with ourselves at first. Like this took me an hour to do but I did it, hopefully helped even one person in some small way. Just like the seasons, everything changes sometimes for a while and sometimes permanently(like my ability to type is now like a five year old, yes it takes a very long time ALOT of corrections but at least the dizziness has subsided and fogginess in my left eye). I thought I was patient, appreciative but we all can improve and help in some way. Hey we ALL i'm sure learned that "everyone is different" is not a cop out answer anymore and it iS true Thank God- so make every breath count- it's your life, it's your breath. Educate yourself and others, it's no ones fault but do not let 'others' lack of knowledge and understanding become your issue. Life IS good, Life IS a choice. Make Your Day Count....whether you call someone you lost touch with, make a cake (that has become difficult alone) just because, play cards with a friend. A cup of tea? Take time to "smell the roses" Tell someone who loves you, or someone else, reach out. It's ok... it's human, it is and can change your life. Just one step makes a difference (lol so to speak) Learn to LAUGH & SMILE- it helps alot. You Can do this. We all have to work at it and make adjustments. Some days it's easier than others. I found for me that it's much better to be positive than negative and people just like you..don't always know how, when, where or why. Let's learn and teach together. Holy Crxp, I didn't know what I was going to say :)
  • Avatar
    SmartyPants  Oct 15, 2014 12:46 AM
    Julie i wanted to tell as many people as i can about a pilot program in Oregon for in home supports for people on medicare only and not medicaid. Oregon Project Independence can help those disabled and elderly when they turn sixty but until this new project anyone younger than that they wouldn't help.
    So i am getting the word out to apply at your county Senior and Disabled Services, they come to your home, fill out the application for you and you can get up to 25 hours a month support for personal care, cooking, meals on wheels, housekeeping, durable medical equipment.
    But the workers told me that hardly anyone has heard about this project that will go for at least a year. So get the word out. I tried to blog on the MS Connections but couldn't figure out how to post, der.
  • isabella   Oct 31, 2014 6:06 AM
    My doctor(neurologe) told me that my anxiety dos not come from my ms.....i dont agree with that. So is it all right to think this? I have secundair progressef ms.... :'( i hope you can give me an anser... Greets isabella
  • lynng1776  Oct 31, 2014 2:50 PM
    I had a nervous breakdown, as it was called, in 1985. I was dx with ms in 1991. I don't know if they are related, but if someone has ms symptoms and doesn't know what it is I imagine, or i know it causes alot of anxiety. Each new symptom causes me great anxiety. thanks for having a place where i can voice opinions.
  • Ivo CoLLu   Nov 3, 2014 6:25 PM
    My wife kandra was diagnosed in 2011,... she has tried the copaxone daily rotating injections, now she is on ampyra and tecfedera,...which is wonderful for her,... no more injections,..now this might prompt a conversation or debate, but my wife recently started the medical marijuana edibles,.. she takes the little candies and it keeps her leg from " buzzing ",...im suggesting this for everyone, but then again it couldn't hurt, by the way they have available the medibles that are clear headed so no high affect still able to function,... just wanted to share this ,.. and thank you kandras loving husband IVO
  • Jacqueline Hirsch   Dec 9, 2014 3:45 PM
    As one with secondary progressive MS, ANXIETY has been the prominent symptom I've had, trumping depression. I find myself trying to address this by eating the wrong foods, craving unnecessary clothng and inwardly beating myself up, and keeping myself on reserve from the outside world.
  • Jacqueline Hirsch   Dec 9, 2014 3:45 PM
    As one with secondary progressive MS, ANXIETY has been the prominent symptom I've had, trumping depression. I find myself trying to address this by eating the wrong foods, craving unnecessary clothng and inwardly beating myself up, and keeping myself on reserve from the outside world.
  • wheele400001  Jul 3, 2015 11:48 AM
    WHAT CAN I DO ABOUT THE ANEXITY ATTACH ?
  • wheele400001  Jul 3, 2015 11:52 AM
    I NEED HELP ! WHERE DO I GO TO GET HELP ? I NEED IT BAD!
  • Patricia Lungley   Aug 4, 2015 12:44 PM
    my brother has been diagnosed withMs since he was 26 years of age in all the time He is now 65 years old he as had very little medication or medical help for his MS. He has medication now for his internal organs which do not function properly any more with a cafeter that comes from his tummy. Tablets to make his motions flow. Other than that he has other tablets to make his body function. He has secondary progressive MS and the Havering Essex MS nurse visits every 6 months but nothing is ever done for Leslie's depression or Mood swings.........we have always been told there is nothing that can be done to help him. He is hoisted in and out of bed into a Wheelchair that he lays in , he is unable to use any limbs or hands everything has to be done for him by Carers that come into his home 4 times a day He can't give himself a drink or any food, he does have problems swallowing and chokes often He lives alone which is a Hugh worry .
  • Mia   Sep 21, 2015 7:48 AM
    Now that i am able to see and identify MS in my daily life, i have to wonder when the unseen symptoms such as inexplicable anxiety. Currently, i have anxiety attacks that are believed to be linked to MS. In other words, has MS always been lurking and rearing its invisible symptoms?

    Thank you, very much, for your help and expertise.

    Regards,

    Mia
  • Helene   Nov 23, 2015 4:35 PM
    I have had ms for 17 years and am lucky that symts have been mild. But the anxiety and depression is bad. Was on Zoloft but Doctor is going to change it because it is not really working. I really don't think my family can understand
    why I have this problem. Seems to be getting worse
  • RDanielle  Dec 8, 2015 5:03 AM
    I am new here to this site but importantly to receive insite and understanding of what I'm dealing with and how to cope with things on a daily basis.. Support support support positive... I have a lot of fears and worries ,, since I am a nurse like not being able to walk and talk or be able to talk care of myself cuz I'm the last few months I have had new symptoms nonstop being some days t better than others thx God
  • Teresa   Jan 1, 2016 1:54 AM
    My anxiety started at least 2 years before I was just recently diagnosed. The anxiety was so bothersome I t had to check and recheck everything I did through the day, I always felt like I was forgetting something
  • Kevin James Patrick Connell   Jan 9, 2016 12:49 PM
    The Pams work great...
  • Marcia   Jan 20, 2016 10:54 AM
    Hello. I was diagnosed with ms in 2008, and last year I had an exacerbation that lasted six months. Once the attack was over I had spasticity and anxiety. I've never had anxiety even after being diagnosed, I've spoken with my previous neuro, but he downsized his practice for patients on the ms meds. I am still trying to conceive so the only thing I'm taking is baclofen. This works really well for my anxiety, and helps somewhat with my spasticity. Should I seek another neuro and continue with baclofen, or see a therapist as you advise to see about other meds? My general practitioner has prescribed 5mg diazepam, but it's not as effective as the baclofen. Can my GP prescribe baclofen even though I don't have a neurologist anymore? Thank you!!
  • kevin   Apr 17, 2016 4:34 AM
    I have secondary progressive ms and when in a social situation my legs stiffen up to the point that they won't bend at the knees w/o help. is this from anxiety and if yes what can be done?
  • sha64  Apr 22, 2016 12:12 PM
    thanks for sharing. hope you are well. how do you spend your time?
  • Mel   Apr 23, 2016 8:56 AM
    Thank you for your knowledge, experiences and expertise. I am currently being diagnosed and have so many questions. Will steer clear of anxiety meds for now and continue to see a therapist. :)
  • scarscar  May 3, 2016 7:46 AM
    I have an anxiety disorder have had it for years!!
  • Marki   May 8, 2016 2:41 PM
    I was recently hospitalized for seratonin syndrome but my symptoms seem to be getting worse since I stopped. My shoulders jerk almost constantly im thinking I could have been misdiagnosed my words dont come out right I have strabismus occaissionly. Negative for stroke sharp shooting pains all over and sometimes I get very scared
  • Helen Cameron   Jul 3, 2016 6:51 PM
    I am an MS sufferer having problems with extreme anxiety and 'smiling depression.' (You don't let it show because it drives people away.) This is worse if you are alone and housebound. If, after a lifetime of busy-ness and lots of friends and loved ones you suddenly have no people left, you are alone with your distresses and fears - and you don't get out. (People seem unwilling to actually befriend somebody with MS. I have even had unpleasantness from people, possibly because they think MS people must be 'needy' and likely to make demands - far from the truth.) This situation must be common and will be a major reason for anxiety/depression in MS sufferers. There must be an answer but I have not yet found it. The obvious possibilities have not borne fruit. Any suggestions? .
  • Brandi   Aug 31, 2016 9:58 AM
    Dx w ms in 2007. Have severe anxiety and some days can't leave the house. Is there anyone who has tried medication w success? Tried cymbalta and felt like I was dying. Feel like there is no help for me. My panic attacks feel like seisures!
  • Lubna   Sep 8, 2016 3:21 PM
    I have a sister who has ms for the past 20 years and she has major anxiety and phobia from falling down (she felt few times and had browses ) and since then she is not even trying do things such as trying walking air assisting her self going alone to the bathroom ..and she is in her long period of denial as she is claiming she is not depressed or having anxiety ..I was wondering if there is any medication that can help her getting over this as it is affecting her life in a negative way and depressing everyone around her .waitingvfir ur reply and many thanks
  • Elaine   Sep 12, 2016 5:25 AM
    Thank you for your comments. I appreciate especially your insight regarding injection anxiety. After the fourth severe reaction, I was advised to take Tylenol in a dismissive email. The severity was ignored. Now I stopped injecting due to the absence of acknowledgement of my experience which frightens me. I am alone with MS due to many factors related and not related. I read a blog about several other people with the same reaction - they were taken off the med. I have only had the reactions after age 61. I will call the nurse - she listens!
  • Elaine   Sep 12, 2016 5:25 AM
    Thank you for your comments. I appreciate especially your insight regarding injection anxiety. After the fourth severe reaction, I was advised to take Tylenol in a dismissive email. The severity was ignored. Now I stopped injecting due to the absence of acknowledgement of my experience which frightens me. I am alone with MS due to many factors related and not related. I read a blog about several other people with the same reaction - they were taken off the med. I have only had the reactions after age 61. I will call the nurse - she listens!
  • Karen Forbes   Sep 18, 2016 7:28 PM
    Thanks so much for sharing this information. I was diagnosed about 3 years ago with MS and despite the MRI that clearly shows lesions on my spine, I haven't thought that I have had any symptoms. However my anxiety has gone off the charts!! I went from a person who let anything roll off my back to uncontrollable screaming, crying and panic attacks. I will now look at my symptoms from a different lense.
  • Mindy Faulkner   Oct 18, 2016 11:13 AM
    I can't believe for the first time someone else nose and has gone through and is going through the same challenges I was diagnosed with MS in 2013 but my symptoms started and my first MRI showing white matter lesions was in the year 2003 I was 21 years old then and couldn't deal with or process the devastating news so for 10 years I did nothing about it. But now for the past 3 years I've been seeing an MS neurologist specialist and has been prescribed to the drug Copaxone I struggle everyday with various symptoms I feel like I'm alone and wish I had someone to talk to about it
  • Topcat   Nov 2, 2016 2:43 PM
    I have had several episodes of seizures, face droops, can't speak except in broken words which takes every bit of concentration I have to get them out. I can't swallow and therefore drool. I have jerky movements and muscle spasms that are very painful. I have lost total hearing in my ears one at a time, I have numbness, tingling, pinprick feelings that are painful. I have been having trouble with my vision, I have fallen many times and cannot even bath unless my husband is home. I have chronic and acute migraines. I had a near fatal car accident 30 yrs. ago and went out the back window as my car flipped end over front then on last flip on grill it hit a phone pole, I watched it stop as I had been thrown out just prior on the last flip then it fell back over me. I was end to end of the rear axel. It was s big older heavy car. (My father insisted I have heavy cars). Luckily I am short and the car did not fall on me but when I broke through window, I broke my neck, back, all ribs, my left arm and leg barely attached. Cuts all over my body, head injury, internal bleeding. The people in vehicles in front of me stopped and sent for help. The lady stayed with me and tried to keep me from getting up. I kept telling her I must get home my dad would be worrying. I was dying, my heart was failing and I was losing a lot of blood. I was stabilized after my heart stopped and then transferred to bigger hospital. I came out of shock outside the operating room and saw my bones and tissues in my mangled arm. Then it was two days later. I had double vision as my eyes were not working at same rate. I was not x-rayed for 4 days, 2 people put me on cart and 6 put me back in bed, I knew then I was in trouble, I already knew I couldn't hold head up. If head fell to one side I've have to call nurse or wait for one to put it back. I of course did not fully comprehend as I was given many drugs to keep me asleep as much as possible. I still have many health problems, could not have children. Have undergone 100+ surgeries, over 200 procedures on neck and back to cut nerves by radio frequencie method. I've always had loud shocking sounds in my head since wreck. I have severe anxiety, depression, fears of driving, going any place. I did go to college as that is what I was pursuing when had accident. I became s special ed teacher, during college I worked 2-3 jobs at a time. I paid for all my schooling without any help from parents. Mind you they were very well off but it's how I was raised. I taught, tutored, coached, volunteered, sponsored Jr class and prom/graduation. I did not take any medication stronger than Tylenol, I wore a tens machine, knee braces, slings. Back braces that I'd have fit at school during my lunch. I only took days off for surgeries. I've had all joints operated on for spurs and dislocated bones. Other surgeries as my body is full of scar tissue so much I've had to have organs separated more than once. They would attached to spine, lungs, all body parts. I don't have any organs left that one can live without. I have pancreatitis, diverticulitis, colitis and now carry c-diff from all the antibiotics. I have a retired country doctor taking care of my problems. No doctor in the area will treat me. They are afraid of all my problems. I guess they don't trust their abilities. Now I have s lot of medical diagnosis, my disc are deteriating fast . I have carpel tunnel in both arms. I had to take leave from teaching. I have all the symptoms of MS but have not had a MRI for years and years on my head. I've been referred to neurologists and was verbally abused by him in the waiting room full of people, I have been verbally abused by many doctors. I'm a puzzle to them and it intimidates many of them. So they come up with a reason to
    Not see me anymore. When they have told me I'm easy to care for I just have a lot of problems. They have all ignored my concern of having MS. Some doctors have even seen it flared to where I'm seizing, can't speak, body jerking and spasing for days when my intestines have sent me to
    hospital for days. They ignored it when I was able to plea with them to help me. I need a doctor who will listen and help me get this diagnosed so I may get help for it. It is very debilitating as well as painful. Recovery time seems to take longer as I am having more episodes and the severity keeps getting worse. I live in southern Indiana not far from Illinois. If there is any doctor out there that reads this and can help me, please leave a comment and I will find you. I have 3 college degrees and I dealt with kids that had CP, spinal bifida, grand mall and petit mal seizures, Downs and an array of autism and learning/ behavior disorders. I have looked at every thing I can about what's going on with me and MS is only conclusion I find. Please, if you can see me as patient or know of doctor who can, get on this site and leave me a comment. My father got transverse myelitis at 33 and was paralyzed from the chest down. He was a principal and returned to his profession the following school year. He was my rock. He passed 10 yrs ago from MRSA he got in doctors office. He was 63 and endured 30 years in a wheelchair. I was raised to be strong, not complain and work 18 hours a days. My body just finally gave out and these MS symptoms had already started but I ignored, endured and kept going. I'm afraid without treatment I'm going to end up in chair or worse. Thanks for reading and letting me share some of my story. There's more than this like the power port in my chest from my veins collapsing from so many IVS and test and PTSD.
  • Georgia   Dec 2, 2016 7:29 AM
    Thank you, for helping me better understand some of my current feelings and symptoms of MS
  • nintendogurlie  Jan 21, 2017 6:48 PM
    I have a mood disorder I have been fighting since before my RRMS dx in '08. I must say it makes me feel less at times as even with mood medication, I stress a lot. Only to come out that stress can make MS symptoms worse or relapse more often. It just seems like there's always stress going on in my life, and it's as of no help to my MS.

    I have the hardest times when I try to find sites and reach out online to support groups only to see pictures of people with MS who are still walking, and happy beyond a doubt and smiling even as they face this terrible disorder. I want to be like them so badly, but it seems most days there's not much to smile about. I get like "Where are all the people in wheelchairs who are feeling down some days, do they not exist?" Especially when I see pictures of people with MS still hiking and biking and doing other activities as such.

    I don't know, I do the best I can, but it's hard and I sometimes feel that I'm in the wrong to not get all happy like the people in the pictures I see. To me this is not a disorder where there is much happiness to be found as symptoms always come back. I don't mean to sound like a Negative Nancy, it's just a struggle for today. I am in the middle of a flare up and that does not help.

    I do my best not to let people see how bad it is, especially my husband as he does all he can and I consider myself blessed. However the depression weakens and makes it hard on me than I should. I know I shouldn't stress, but it sure is hard not to. Anyway that's just my 2 cents as to where I stand at the moment. I needed to try to get it off my chest. Thanks to anyone who read this. I will keep trying to fight this with a smile but sometimes, it's just hard. I don't want to be alone in this feeling.

    I try to be upbeat, but sometimes all the pictures of people so happy make it hard for me to see the down sides, or people who might feel like me. I try not to pity party all the time, but sometimes it's hard and like below, I just cry. :( I have me games to take my mind to other places, but cognitively it's not always as easy as it used to be.

    Take care sisters and brothers in the MS fight. I just needed to spit out my 2 cents for the day to help me get through another one. :) <---see smile!
  • Kelly   Apr 16, 2017 2:46 AM
    I get severe anxiety and difficulty breathing around my period. I have ms and this has been getting worse and worse. What can I do to manage this?
  • Twigstein  Apr 27, 2017 11:58 AM
    Anxiety about the progression of my MS is breaking out in a disruptive way, more and more frequently. I can easily become overwhelmed by "What if" and trying to gain some measure of control
  • Avatar
    gerrig2085  May 17, 2017 1:48 PM
    This is exactly what I am going through right now. I have never in my life experienced such anxiety that almost stops me in my tracks and keeps me from trying to do things on my own. This was a fantastic read, even if I did have to re read it over 3 times to comprehend what I read.
  • Lashawna Fleming   Jun 27, 2017 12:40 PM
    Hey MS survivors .. am I the only one that has gotten a case of bad nerves and anxiety since being diagnosed? Or very impatient which leads to bad headaches. Every little thing I think about too much gives me a headache , but it's not a normal pain on one area of your head it's like a constant brain freeze . Or when I'm under stress , I get bad chills . Is that normal ?
  • Albert Seole   Jul 10, 2017 6:11 AM
    Nice Post. Thanks for sharing. this is one of the inspiring article which explains the anxiety.

    https://www.dynamichomeopath.com/best-treatment-for-anxiety/
  • Mrs. Hutchinson   Jul 11, 2017 12:59 PM
    My anxiety has to do with the elevated glutamate (neurotransmitter) found in MS patients. Upon further study, it seems most MSers have this problem. Amino Acid therapy from a naturopathic doctor has helped me a lot. Thanks.
  • madelinepender  Sep 12, 2017 1:04 AM
    Depression and anxiety are common nowadays, most of the people are suffering from this kind of issue. Generally neurotics experience such feelings as anxiety, worry, fear, anger, frustration, envy, jealousy, guilt, depressed mood, and loneliness. They are often self-conscious and shy. People with high neuroticism indexes are at risk for the development of mental disorders. It needs to be quickly treated with any medication or consultation. Actually, I know being depressed can make you feel helpless. But you should try changing your behavior, your physical activity, lifestyle, and even your way of thinking. You can also search for some useful references out there http://www.martine-voyance.com/consultation/. Read some inspirational articles daily to develop positive thoughts in you. As it is said when you think positive, good things happen to you. I hope you get well very soon.
  • James   Sep 24, 2017 11:05 PM
    i love a good sound spanking i wish i could get spanked every day i love it