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  • care10981

    HI everyone, First, I want to say I truly hope you are all feeling well today. I don't know what I have (and I will get to that ) but I do know about living minute-to-minute, battling the constant suprises delivered by the body you are stuck in. And second, on your worst days, when people look at you like you are weak remember to laugh and know they wouldn't handle a tenth of what you deal with on a GOOD day. I am in need of advice, or maybe just opinions. I will try to keep this as short as possible, though I apologize if doesn't work out that way because I am just TIRED and need to vent to someone that really understands. Three years ago I walked into my neurosurgeons office for an (unrelated) repetitive motion injury and asked him for help with cluster headaches I had just started getting. He said it was trigeminal neuralgia. I had also told him about minor tingling in my leg - it felt like it started to fall asleep every time I went for a walk- as I was walking. Over the next few weeks it got very strange - Touching a spot on my leg would cause that specific spot to tingle. Over time the intensity of that magnified, I was a cosmetologist and whenever a hair dryer cord would gently graze my leg BOOM ant farm in that spot. In addition, the constant tingling in my legs worsened as well and turned into an intense feeling of seltzer, or electricity even, 24/7. And the heat thing is no joke go I went into a tanning bed one time and it felt like someone turned my power up. Since that time, I have developed the following symptoms (the leg tingling is pretty much constant, so is the tri.neu.)- migranes, blurred vision, dizzymess, vertigo, hot/cold spots, cold hand/foot, numbness feet, numbness in legs (mostly just rt.) and tongue , tingling in stomach (side) /arm/face /scalp/around mouth /tongue, changes in taste (drinks taste like salt sometimes ), loss of balance, trouble with stairs, coordination issues ( dropping stuff ALL. DAY. LONG. ) hand to hand transfer/depth perception / missing steps when walking etc.), incredible fatigue, insomnia, forgetting words, what I want to say, and even entire thoughts - like they are on the tip of my tongue, this may sound strange but if I'm in bed and I close my eyes and move my foot thinking its in one spot I find out it was in an entirely different spot then where I thought it was, spots of my skin will feel like the are sunburnt when they are obviously not- other times areas will feel so raw it seems I have no skin in spots, one day as I was walking between rooms in my house it suddenly felt like my ankle snapped or something andit was painful to wall for almost 2 days - immediately after the initial feeling the bottom of my foot felt like I was getting burned - any minute, any day I will get a new suprise such as that. 2 weeks ago I had the onset of my second "episode" ocf sorts, and I am wondering if what I am experiencing are relapses? It way a 5 day EXTREME exacerbation of every symptom I have ever had, multiplied. I could not walk without assistance, the vertigo, dizzymess (I was going to fix that typo but autocorrect is correct- dizzymess is accurate here) and fog were unbearable. I hardly even remember what went on those days as the foggy feeling felt like a dream. A year ago to the day I experienced the same thing. The difference was, last year, on day 5, I was given an oral steroid from the dr. that initially mentioned MS and bounced back to (my)normal and that was that. This time, my neuro was on vaca and I did not get steroids and, never feeling like I ever had a a full recovery, I feel like am declining back into hell. Over the past 3 years, I have seen multiple drs. (only one of which looks at me- not only labs. Unfortunately, because he is technically only supposed to be treating me for a compensation issue and not billing me for any other care because he does not affiliate with private insurance, he cannot treat me or dx me..according to him. Personally, I think he is covering himself for not keeping the visits "comp-only", so while he is a doctor to talk me through the mental aspects, and he cam treat my symptoms it's not helpful otherwise I have had 2 brain MRI'S , the most recent without contrast (idk what the physicians reason was- he said it didn't matter, I disagree ), an LP, evoked potentials, an angiogram, chest CT, kidney ultrasound, an echo, had 23 vials of blood drawn to successfully rule out lupus, Lyme and other disorders. My b12 was low but I have since beem supplementing (for 2 years) . I have started seeing a Dr. At Cleveland Clinic, he said that based on symptoms, he would be inclined to dx MS, but due to clean scans (that hedid not see) he is going to say fibromyalgia bc I am within the diagnostic guidelines. However, he is sending me for another Mri monday to see if he can find anythong. If he does, he will change my dx.. all that means my fibro is healed?!?! (I'm being sarcastic, in case thay is not accurately conveyed on here lol) I am SO TIRED OF THIS! I believe people with MS are smarter than drs when it comes to these matters, so what do you think? I know what I feel, and this does not feel like fibro. If not, MS than what? Thanks l you for reading post /novel! Carolibe

  • maria1

    We all have a checklist of every autoimmune ailment and every other imaginable ill. Some we have been diagnosed with, like arthritis, fibro, chronic pain, All before they label it ms. Even though the first thought is ms, there is the seven hundred other things that they have to rule out first, maybe it is to guarantee their income? Or to prove their ignorance, or to acknowledge that it is truly a baffling illness. Don't give up till you get the relief you need.

  • evestarr1
    Hey care! I've had fibromyalgia for over 20 years, and MS symptoms for the last ten. They are so distinctly different from each other that I'm stunned that your Dr Dx'd you with only fibro. The attacks I get with MS are so unique. The lost days, the crazy ant farm tingling (perfect metaphor, btw!) and vertigo are things I never experienced before. I drop stuff all day too, which is newer. My family and I have running gags about the dropping thing and the vertigo. Your neuro is being narrow minded, in my humble opinion. Everything you learn when you research MS online or here reminds us that five percent of MS sufferers will never have visible lesions, and the comments I've seen here about lumbar puncture makes me more determined not to go that route. This is a CLINICAL diagnosis, despite all of the tests. Are you keeping a detailed history of every single symptom, no matter how weird or random? It's easier for me to journal my health (like I was supposed to do before) now that I have symptoms that interrupt my life all day long. My neuro found my history very helpful, and I'm surprised at how often I'll look over my journal at the end of the day and see things I wrote down that morning that I had already totally forgotten! If your neurologist isn't tuning in to your symptoms as something distinct from fibromyalgia, I would seriously consider getting another. Keep us all posted on what happens. These discussions have been hugely helpful to me, and the navigators here really go above and beyond.
  • care10981
    Thank you for this!! You just said everything I always try to convey to others - and try as they may they just do not understand. I start to feel crazy, and I really needed to hear it from someone who gets it. I am not currently keeping a journal, but I am going to start- for the exact reasons you just stated. Sometimes symptoms are so terrible I don't think there is any possible way I could forget. Well, of course I do. Especially once the next suprise creeps up. Thank you.
  • SamiJami
    FM and MS are different but can both present themselves in similar fashion. MS is pretty much ALWAYS the very last diagnosis that any doctor wants to give, and for good reason. It basically means that the doctor will be grasping at straws to do anything for you. Oh, you have pain...Well one day this one drug will work BEAUTIFULLY and the next, it won't. But you don't really know, so you keep trying and patients get annoyed with retrying meds or therapies. Then there's no right or wrong medication to slow it. So you may have to try a few of those; and that can suck horribly. Then there's the testing. Now, I'm weird and like MRIs and I like being in smaller spaces. But I'd say about 60% of people with MS that I know hate them. Another reason is that you may have one symptom that only happens twice and it's a huge deal. But the doctor can't replicate it and can't see anything about it. So you need a neurologist that you can trust and that trusts you so you can both go after it as a team!

    You are right, contrast for an MRI is super important as it allows you to see if there are new and active lesions. Doctors are also hesitant to diagnose MS if you have a clean MRI and LP as it could be hundreds of other things - which may be treatable. 

    My grandmother has FM and was originally diagnosed with MS due to her pain, symptoms, and plaque on her brain. But after about 14 months, they realized that it was FM. There are some tests that can be done to pinpoint that, or at least I'm told so. 

    I would suggest that you find people with MS in your area and ask them who their neurologist is and if they like their doctor. Then, try to see that doctor! I currently drive an hour to go to mine becuase I needed to find one that was willing to work with me as a team and didn't treat me like an idiot...and was willing to be open minded about all the random crap I try to help my symptoms :)


    So don't give up! Just try to find some local resources and get a good neuro to look at you. Your symptoms are very MS-like and I'm sorry for that! Keep up the good spirits!!
  • annastinson
    SticK with your intuition !! Hi, my name is Anna Stinson and I too was diagnosed with Fibromyalgia, 
    I was more than certain that, Iin fact did not have this disease.   I found the needed physicians and did as told but I not only refused to 'own' said disease I refused to be thrown into that 'fibro bucket'. I wanted to get healthy. I took myself off the common fibro rx and after a life changer ( and 10 + years ) I was diagnosed with Multiple Sclerosis.  Once a Dr told me that MS is difficult to diagnose.  My reply, so was fibro. Stick to it ! I'm on your side & I understand. Best of Luck.       A.S