This is going to be long...:) I was diagnosed about 6 weeks ago. I am 47 and a mom to 2 teens and one young adult. Early this summer I started getting painful tightness in my torso with pain in my rib cage, left side only. At the same time, I had numbness in my left leg and both feet (that has happened on an off for years and I always thought it was just a pinched nerve. I even went to physical therapy for it. Doctor said that I was running too much). I started feeling episodes of feeling light-headed and dizzy in June. They would come and go. And headaches...non-stop headaches. I had been fatigued for months and months, needing daily naps, sometimes mulitiple. I was ashamed that I was "SO LAZY". I hated my kids seeing me constantly resting. My primary doc thought I might have a cracked ribbed cartilage that was pinching a nerve. He sent me for x-rays and ultra-sound, but nothing showed up. He then sent me for an MRi, and then another. Then, the radiologist requested a brain MRI. I was confused. A day later, my doctor asked me to come in to discuss my MRIs. He said that there were lesions on my spine and on my brain and plaques that indicated that I have had MS for 5-7 years. He said that it was a definitive that I had MS and he had already made an appointment at an MS center here in CT. I had to wait two weeks for that appointment with the neurologist and nearly went crazy waiting. I had ( still have) so many questions. My speech has started slowing and I am unconsciously sticking my tongue out slightly when not paying attention. Anyone else do this??? I went to the neurologist, he ordered one additional MRI and bloodwork to check D, B and also to check for a virus for a certain med. I just finished 5 days of Solu-Medrol at home. During the infusions, it really wasn't bad. I never got the rush of energy that I had read so many others do. I was exhausted and slept many hours per day. I had some heart-racing, but no real problems. BUT, the two days after the last infusion...GOOD LORD! I had pain everywhere, major anxiety, crying, depression and all around craziness. Scared me and my family. I called my neurologist and he said I was probably having withdrawl from the high dose of steroids and to give it a day. I did and it got better on day 3. I haven't seen any real improvelment since the steroids. I finished them 10 days ago. My speech has gotten some better, but not much and I am still in pain. My spine feels like it is burning. I wake up in the middle of the night, every night, with tummy troubles. I feel 90. I have an appointment on the 19th to discuss medication options. I feel a little lost and confused. The "MS Hug" around my middle has not let up in more than 3 months. Will I have this forever? Do the MS meds eliminate symptoms in some people? Stupid question? My temper is shamefully short with my family. I hate it. When do you know what kind of MS you have? My doctor dismissed the question. Too soon to determine, maybe? Any input or advice is welcome.
For me I refuse to do steroids anymore. My first neurologist when I got diagnosed in march put me on two rounds and honestly I felt worse. The numbness went away but everything else got worse. Solumedrol is notorious for making people irritable. I was snapping, randomly crying. i heard from a coworker whos husband has MS that he started calling people and cussing at them. It made me weak and it made my pulse drop to 29 then raise to almost 200. It took about amonth for it to subside. As for the MS hug, I just got this and I am currently waiting to get on Acthar- another drug for flare ups that is steroid free and doesnt mess with the immune system. It gets better and some days are better then others. I hope this helps. I think from your story the solumedrol really affected you as well.
LB, if you have ever been ill(giggle) like the flu or high fever, then you know that afterwards it takes a while for you to feel normal, or to begin to be alive again. It is the same for a trip on ms, an exacerbation and needing steroids (ugh-but necessary to stop it in its tracks). You look normal but your brain has been bouncing around the walls and needs some time to rest and regroup. You dont look ill, but your brain has been attacked and now needs time to heal. Just because you and no one else sees any effect, there is still trauma. Be kind to yourself, rest and heal. just because you dont see anything doesnt mean it isnt there (it is all in your head(giggle again)).
ms hug can be controlled by deep breathing exercises and telling your mind to tell your muscles to relax instead of tensing up. Remember, most of the time, the mind tells the body what to do, keep giving it orders and it will respond. Tense your muscles then relax them, you will begin to get into the habit of doing it and seeing how we help the muscles to stay tense.
I, too, was diagnosed 2 years ago at 44. My family is younger though (kids were 7 & 9 at the time). My Dx was not 100% confirmed until late into my last major relapse & the steroids scared me, so I just rode it out. Like you, we also suspected that I'd had my first episode about 7 years prior.
The National MS Society website has some really great educational resource. I recommend reading through as much as possible. You will be given RRMS at first while they watch you to see the course of your disease. As of now, I don't think there are any tests to confirm the type of MS.
Some of your symptoms may take a long time to heal and some may never go away due to permanent nerve damage (sorry). You WILL adjust to all of this & learn to listen to your body over time. For now, you need a lot of self-care and rest. It took me a year to come to grips with this diagnosis -- and frankly some days I'm still in denial.
Lastly, don't underestimate the emotional impact of hearing you have a chronic illness. It is life altering. I remember many many days looking in the mirror and wondering who was looking back at me. I felt lost and so depressed at the idea of burdening my husband and possibly not experiencing the life I'd imagined with my kids.
Two years later, I can say my life looks nothing like it did at the time of diagnosis -- in fact it is so much better! Yes, MS impacts my daily life. However, I'm fortunate that for me the progression is slow right now, and as a result, I've been able to make some major life changes to really enjoy my kids and to take better care of myself than I ever have.
Its a long answer, but I see so many similarities that I felt the need to reply. Message me anytime. Hopefully some of this was helpful to you. Nothing about MS is fast, in my experience, so give it all some time.
It's true, doctors need an ongoing history of occurences to decipher which form of MS you have as well as MRI scans to compare. Also true, your body will react in sometimes crazy ways to the meds that are supposed to be helping you. The craziest thing about this disease is that it affects every patient in different ways. My husband's great grandmother had this disease and the worst that happened with her is that towards the end of her 80+ years is she had to concentrate on holding her coffee mug so she wouldn't drop it. For me, I have a bit of a short temper (had that BEFORE my diagnosis), I can hardly feel the ground under my feet, and vertigo has taken up semi-permanent residence in my head.
It's a fight, every day sometimes, but when you surround yourself with good people and have cheer squad websites like this you'll be able to pull through whatever this disease throws at you. New evolutions in treatments are happening all the time. Treat yourself to good things every now and then and if necessary punch a pillow now and then. Hugs to you and good luck here on Planet MS.
I am sorry you are going through all of this. I am on Tecfidera and was never prescribed any steroids so I cannot speak to that. Not sure if Tecfidera would work for you but feel free to look into it via This Link
. It is for relapsing MS so I guess you'd have to figure out type of MS you suffer from. I know this is a confusing time. I was diagnosed in late July of this year after quite a few lesions were discovered on a brain MRI and also my spinal tap results came back affirmative for elevated levels of the protein "o" bands associated with MS. My neurologist said due to the amount of lesions and the amount of elevated protein band levels that he feels I have actually had MS for while. It definately makes sense when I thought about it. I am sure what you're going through it likely similiar to what I experienced. I ignored for so long so many signs of MS cause in my case I disliked doctors and hospitals and would just write off my symptoms in any way that I could and explained them away to myself. I rarely compained outwardly to anyone about my symptoms. Until I awoke in Mid may of this year with very noticable speech slurring and my lower right side of my face felt stiff. I felt like I'd had a stoke or assumed so anyways. Still I waited a month to see my doctor. This speech episode dragged on for at least a month. I am sure many people who get MS due something similiar as that, ignore symptoms and find some way to write them off. Everyone around me was like you need to get to a doctor. I am so glad though that I finally did and know what I have now, at least I have answers. That's what you have now, you have answers. A path to prevent more issues for yourself and although MS has no cure, the medications are there to hopefully prevent more lesions and relapses so that's hope in so many regards. I pray you feel better soon and if you have any questions feel free to ask me via this thread or private message me.
Hello LB and everyone on this discussion - thank you for sharing your expereinces I, too, am a relatively newly diagnosed mother of two (girls 7 and 5), and am 42 years old. My first symptoms were 17 years ago (profoud optic neuritis treated by IV steroids, which made me feel like a complete lunatic!). I've had another round of those since, and still detest them.
How are things progressing for you LB? It sounds like a very rough road with your diagnosis. Have you started a therapy? I wanted to share that I started Ocrevus (ocrelizumab) yesterday and am thrilled. Failed two prior meds due to allergy (Copaxone) and intolerance (Tecfidera), but my insurance (Cigna) finally aproved me for Ocrevus, which they will only approve for a third line therapy, though it was studied in newly diagnosed RRMS patients as part of the Phase 3 studies that supported FDA approval. Anyway, if you have not settled on a therapy, it may be worth talking to your doctor about Ocrevus (OMG - I sound like a voiceover from a drug ad - I swear I don't work for Genentech!). Anyway, since I have likely had undiagnosed MS since my first optic neuritis 17 year ago, my neuro wanted to get me on something pretty aggressive, and would have started me on this earlier if insurance would have approved.
The first infusion went very well. It's a slow infusion, but I was in/out in under six hours, inlcuding post-infusion observation time. Honestly, the only lingering issues I have today are flushing/shakes from the steroid that is administered prior to the Ocrevus.
I hope things are improving for you, LB, and please don't hesitate to reach out if you have any questions related to experience with Ocrevus - I'm happy to report back as I have subsequent infusions.
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