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  • bananamalt
    Good evening everyone,

    I have been a member for a few years now. I started in my 20's and now here I am, in my early 30's. My body is worse, my symptoms are worse, and I am feeling completely defeated - especially in this social climate. 

    If you are reading this, please let me know if your story is similar to mine. Especially if you've found clarification or an answer. I have three toddlers, 9 animals, I'm in grad school, and I've started getting panic attacks the last few years because I was 'temporarily' diagnosed for a long year with MS. The first and worst one was during my first spinal tap. -- SO. I could use some help from the REAL professionals - the people who know what MS actually feels like. 

    In order of symptoms: 
    1. numb left cheek/jaw - only when tired. Then over the past few years became almost constant. 
    2. Left calf numbness. Occasional, I thought it was from all my rollerblading! 
    (doctor has now referred me to a neurologist - ms diagnosis - now sort of revoked, kind of)
    3. Calf pain moved to left shin. It has now currently in both those places, but after a lot of physical movement and extreme heat and being outside, I developed a really strong numb/almost electrical and tingly/weak feeling in the right side of my inner foot and up into my ankle. The numb sensation is slowly rotating around the muscles in my left foot. The numbness is also slowly getting more intense. Walking down the stairs felt really, really weird the last two days. 
    4. My two natural child births - I didn't feel any contractions or pain in my entire left torso side between my ribs and hip bone. I felt lots of pain in my right side, nothing in my left. I still don't feel pain, including when I do pushups or abdominal workouts, in my left side/biceps/pectoralist. 
    5. I was diagnosed with costochondritis in my right ribs and the MD gave me a shot.. in my butt, for inflamation and pain. 
    6. I was just diagnosed with "dry eyes" and have been on and off antibiotics and antiinflammatory eyedrops for the last two months. 
    I had optic migraines in my left eye and lost vision for about twenty minutes - 3 times? 
    7. I've had corneal errosion and have gone to the ear twice for my cornea lightly tearing. 
    8. Sometimes I really do get brain fog and I forget words and have cloudy thinking. 
    9. My left arm has been lightly tingly and cool feeling for the past year. 
    10. I get weird muscle twitches. I noticed during an MRI , when I was actually still, that my body had little muscle twitches all over. Sometimes they caused weird jerking movements. Slight, not always obvious. At night, I really notice my legs lightly jerking.
    11. I've had fatigue, quite a bit. But I'm also very overloaded with kids and schooling/animals/stuff. 
    12. I've been getting a lot of headaches the past few years. The last few weeks it's been REALLY hot outside and I've been getting headaches. Some turn into migraines, others don't. I'm not sure it's the heat, but I've noticed a connection. 
    13. I have tripped a few times. During kickball, once while running into the ER with my sweet baby in his carseat. I tripped (?) over a crack in the road or my leg gave out. I summersaulted over my baby and ripped by jeans/bloody knee. Baby is very okay. Hospital staff was really concerned. 
    14. I've had foot drop on my right foot twice for over 12 hours and a third time for less. It's almost always after I do a lot of activity (rollerblading, kickball). 
    15. Sometimes I drop things, but I'm not sure if it's a part of MS or just my clumsiness. 

    If anyone has an idea... I have two brain lesions that haven't evolved in three years. My symptoms are slowly getting worse. I haven't had a spinal MRI in a few years, but I've had many brain MRIs. One is bigger, but not by much. 

    I have seen three neurologists. All say different things. One wants to give me medicine for my symptoms, but won't give me an official diagnosis. He says that I could have MS, or clinically isolated sydrome. He said he wasn't sure enough, but he'd give me medicine for my numbness/tingling/etc. !! 

    The other neurologist thinks I have CIS. I haven't seen him in two years, but he thinks I have some level of MS but isn't quite sure enough to give me a diagnosis either. 

    They all just want to wait to see what happens, but my body keeps getting worse and I have sweet little chubby toddlers to think about - and their futures. 

    Anyway - any ideas? :) Has anyone gone through a similar path? 


  • maria1
    Hello Saryn,

    Nine animals, oh my! Have you taught your children to care for the animals, have you taught your children how to be independent, or are you super Saryn doing it all? I dont have children so cant know how to make them independent at toddler age, diapers? I guess. Changing your mindset to see them as independent may be a relief, thinking that they are going to be independent may be beneficial. I hope there are some parents reading who can give you some pointers for kids.  

    Breathe, breathe some more, and when you feel the panic coming on, breathe again. Relax all your muscles, and if you think they are relaxed, tense all your muscles then relax them to see if you are keeping your muscles tense.

    Learning to adapt with a menagerie is something i have never done so I cant advise about that. And going to school too. When I was in school I didnt know I had ms so I didnt know how or why or what to adapt. Spend a minute looking inward, calm you mind to relax, life goes on even if the dishes are waiting. Find the fastest easiest way to get the job done. At one point I was working six days a week and the laundromat was closed on Sunday, I kept piling laundry in the closest and buying what I needed, good thing the closest had a door! 

  • maria1
    ms is sometimes diagnosed after all other possibilities are eliminated or an episode is so obvious. For sure you think there is something wrong. If you are comfortable in the belief that it is ms then proceed from there. You can go to the SYMPTOMS page to see how others have fund relief for the symptom you are questioning. You can also compare your symptoms with the known symptoms of ms and those that do not fit the criteria search elsewhere for relief, many of us with ms have other medical issues that we have eventually found relief for. We have all seen other specialists.

    If you are comfortable with thinking it is ms you may wish to begin with muscle relaxing exercises for spasms, the most annoying of ms symptoms. You can also read the post: Take Charge of My MS for mind altering techniques. As it says at the bottom of the page, Knowledge is Power, the more you learn about the disease the less you let your imagination wander into unhelpful thoughts and what if's. We can not advise if it is or is not or if it sounds like ms, we can just share what has worked for us to get relief and how we have learned patience, because nothing about ms comes quickly, it is always a long drawn out process.
    Just my two cents.  I was diagnosed in 2007 at Mayo Clinic.  Main problem was I had documented cases of optic neuritis and this last one did thinning and serious atrophy of optic nerve, besides failing some of the other neurological testing they do, gait problem and standing, and blah blah.  I've never had vision in left eye, so losing right eye was dramatic.  I don't want the MS label.  I have no lesion on my brain but we know there is so much more to the brain than the MRI can see.  My other true black & white neurological is achalasia (test is yes or no,no maybe), dysphagia (again yes or no, no maybe) extreme resting ataxia (yes or no) and I also have small vessel disease of the heart (literally my vessels are smaller than normal, tried to do the cath through wrist, no way, was painful as hell). Falling, oh yes.  I can stand and fall completely back like a plank. I am taking balance physical therapy.  We will see.  I have seen so many specialists. (the achalasia took 4 years because it's so rare and doctors want to blame anything else you have on MS).  I've had probably 20 MRI's, (not kidding).  Neurologists are the worst doctors in my opinion and I've ran through them all.  There are so many people who have problems that get no diagnosis.  You don't hear about them too often.  But if you get that MS label, other issues may and will be missed (case in point achalasia and ataxia which are not MS-related problems),  First heart attack, oh anxiety, wait EKG, d dimer, enzyme test, Sh$t she's really having a heart attack (small) one.  Anytime I see a neurologist, I say no you do not get my old records and test.  You start from new. I've told a lot of doctors I believe I suffer what the football players and such suffer and that is the gray matter which they can't check till you dead.  But I was drop kicked across our yard at 4 and I don't know how long I was out and then my daughter accidentally hit me in the head with a golf club.  Was on the putting green, she didn't let me step back and whacked the hell out of my head.  Got stitches. (still have dent), Suffered abuse which does mess up the wiring of our brain.  I don't seem to be giving you much information.  1) don't mention MS. 2) say yes I have old records, but let's start with fresh eye's and don't mention anything else you have been told by another doctor 3) there are so many other diseases and deficiencies that could be responsible for all of these. 4) if you have to go through 40 doctors (if you can) then do it. 5) Don't be passive and don't be rushed.  If they don't take at least an hour with you, they are no good. 6) Don't get that Multiple Sclerosis label and unless it is  ruled that nothing else is causing this because anything else you get is blamed on it and they could miss a heart attack, or choking due to dysphagia. 7) Read brain on fire. (if you haven't)  A few times if you memory is like mine (very eye opening, short book).  This was a woman with money and an intelligent parent with her at all times and she almost ended catatonic over one white blood cell and a clock drawing. 8) hang in there.  I finally have a group at USF Tampa which is 4 hours away, but achalasia doctors is there, dysphagia doctor is there (she is the one that referred me to the ataxia specialist) new optic neurologist and neurologist are there (those these two I haven't seen face to face due to corona) But they are listening, they aren't sticking me in a box. I have faith, I also meditate, journal, laugh, laugh, laugh. And live life.  Even when I sit down with the wrong family at the restaurant or try to bust down the wrong hotel door, or knock out the sliding glass doors at Publix (employee's move fast) That was the funniest, asked the guy next to me, you see that woman knock that whole side of glass doors out. hahaha. And in your darkest times, no you aren't crazy and be your biggest advocate.  I hope this helps somewhat. It's meant with love and compassion and hope.