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When did you know something just wasn’t right?

Hi, I have no diagnosis yet and am awaiting an MRI. My feet burn to the point that I avoid walking or standing, dizziness, huge fatigue like I’ve never felt, quick bladder, IBS, my muscles seem to clench on their own. Joints hurt, hard time seeing at night, I get strange shooting feelings of fuzziness up the back of my head, neck, sometimes shoulders. I also get a cold dripping /buzzing feeling down my thighs and I also have limited feeling in my quads.

I know deep down something isn’t right but it’s taken 3 years to convince someone to give me an MRI. Did anyone’s symptoms start off with feet burning and heavy legs while walking? Anyone have symptoms but can still seemingly look fine, walk somewhat normal, etc.?

  1. scottW, I'm so sorry that you've suffered with those symptoms for so long without a diagnosis and treatment relief.

    To answer your question: One of my initial symptoms was leg weakness. What's more, lots of people present with your symptoms before getting an MS diagnosis. It's pretty typical to look and function normally despite having had an attack of MS, especially in the beginning. Disabilities accumulate over time.

    Some other thoughts:

    1) Diagnostic testing for MS includes a spine MRI in addition to a brain MRI. My first MS lesions developed in my cervical spine, then later in my brain. If your brain MRI is negative, you might ask about getting a spine MRI.

    2) Know that many other medical conditions can cause your symptoms besides MS. So if your MRI results are negative and your doc hasn't already run a bunch of tests to rule out other stuff, keep pushing them to investigate further.

    3) Are you taking anything for your symptoms? You can have them treated without a diagnosis. There a few different types of meds for muscle stiffness, and meds for those strange sensations you've described that are neuropathic discomforts.

    I hope you can find some answers and relief very soon! Please update us when you can, and of course you're always welcome to vent, comment, and ask questions. We care and we'll help if we can. --Kim

    1. I replied above

  2. Hi Kim!
    Thanks for the response, it’s so comforting to finally speak to someone.

    1) So I have had an MRI on my lumbar (to check for rheumatoid problems) and my neck, both came back fine but again no one was looking for lesions - and also one on my head coming up in June because of the dizzy spells I have had, my neurologist never mentioned possible MS - my doctors have not suspected MS and in fact it’s never come up. So far they blame fibromyalgia but, something is just different than anyone with fibro I’ve talked to. My nerves seem very tender, a lot of throbbing, and even last night I had this very odd sensation like someone was rubbing something sharp prickly on my foot ankle and shin, kind of like pins and needles. I’ve also had that in various random areas of my body. Aside from bad dizzy spells, sore feet, legs and general stiffness, my knees give way sometimes which almost topple me over.

    2)I’m pushing the doctors for more even though they think I’m crazy and wasting their time, but I know deep down something just isn’t right. I wish I could get them to look into the possibilities of MS, but they don’t even bother. I do understand there are other diseases and problems that cause similar symptoms which I have explored such as going to a rheumatologist whom found no rheumatoid issues but I have no idea if they would have been looking for anything else like MS other then looking for symptoms of arthritis.

    2)Right now I am on cymbalta and I get weekly injections at a pain clinic of bupivacaine - I also take medicinal THC oil- I started all these drugs at once so it’s hard to tell what exactly is working best, but either way it’s the best I have felt in 3 years, I still have the throbbing burning sensation in my legs and they are not as intense, stiff or heavy feeling as usual.
    I have tried quite a few other medications to no avail, however I’m wondering if whatever I have is currently in remission or if it’s the meds.

    1.5 years ago, I could hardly move from my office chair, and I no longer did any physical labor for my business as I just couldn’t move. So many people tell me it’s in my head because I think they see me walking almost normally and I never talk about the amount of pain I am in.
    Anyway, I have an optometrists appointment on Monday to check my eyes, and I have requested them to check for any possible trace of MS. Will keep you posted, thanks so much for the reply, I haven’t talked to anyone about this in detail yet. Thanks.

    1. Hello Scott
      I am in the same place as you it seems. I know something isn't right but MRI came back clean 2 years ago. I went gluten free at my doctor's request after all tests came back negative except that one and the symptoms slowly subsided until they were virtually gone so I figured it was gluten all along. All my symptoms came back in December, and my legs were/are affected. My knee constantly collapses and it will also stamp violently on it's own accord. No one has mentioned MS either so I'm not sure if I should mention it at my neurologist appointment on Wednesday. I feel everything points to MS but since I also have high anxiety I think the neurologist blames that. I'm on paxil now and it is working wonderfully so anxiety is no longer part of the equation.
      Have you got any answers yet?

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