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Does anyone else with MS experience this

Posted , 6 users are following.

Fotopet54
Fotopet54

I was ‘unofficially ‘ diagnosed with relapsing/remitting MS just over 6 years ago. Dr said I have it but he wasn’t going to put that diagnosis on paper basically because I am still able to function normally, at least for the most part. I’ve had several symptoms for a lot of years, but a couple of years ago something else started during a symptom flare. It’s like everything inside of me wants to draw up tight...that is the only way I know how to describe it.  Now the worse it gets the more I walk off balance. Does anyone else have this?

0 likes, 9 replies

9 Replies

  • jeralyn31046
    jeralyn31046 Fotopet54

    Posted

    Consider a different doctor...typically if this is suspected medical treatment is prescribed..not a cure but to prevent reoccurances and permanent damage early on. Wait and see...is not the current medical advice. So a second opinion is a good idea. There are other conditions that mimic MS.

    Has an MRI and spinal tap been done? These are necessary for a diagnosis.

    Hope your find more information and don't give up.

  • cherryl76275
    cherryl76275 Fotopet54

    Posted

    Fotopet54

    I'm not sure what kind of Dr. (Speciality or field of medicine) told you have it, yet won't document it on paper and wants you to put it aside. And yes, I have MS and Do have the symptom you're asking about. The pulling.

    Please, please see a Neurologists, who specializes in MS. While you go untreated you risk progression, lesions and lesions multiplying as well as growing in size.

    • Fotopet54
      Fotopet54 cherryl76275

      Posted

      My doctor was a neurologist...he even told me about a client that had come  in several years earlier who thought she had MS....he told her no she didn’t, and a few years later he told her that he had made a mistake, she did have it!! I saw another neurologist who told me all I needed was to take melatonin and vitamins.  I have several symptoms, the worst being lack of bladder control....but the pulling has become about equally annoying.  Hubby and I were talking this morning....after seeing the  last neurologist I gave up on doctors pretty much.  But I’m going to try again. A few other people I know who have MS and live down here have had the same issues with neurologists here....one friend had symptoms for 15 years...mother had for several years but doctor refused to diagnose her until she literally couldn’t get out of bed and walk one morning.  It gets extremely frustrating. 
  • cherryl76275
    cherryl76275 Fotopet54

    Posted

    Fotopet54 a simple Brain MRI can be beneficial in giving many answers about MS, as well as it's progression. A spinal tap isn't always necessary. I've never had to have a spinal tap done.

    Hope you get some better answers.

  • jeralyn31046
    jeralyn31046 Fotopet54

    Posted

    It is time to see a different neurologist. Waiting to see is potentially harmful. They have no cure but meds Yes to reduce flare ups and prevent permanent damages. To confirm you need an MRI. Dont wait. You need to know for sure what it is and take action.
  • bic24773
    bic24773 Fotopet54

    Posted

    Hi

    Where are you?

    Surely a proper diagnosis would be best, a Dr cannot do it without tests. You need a neurologist. Then you would have access to an ms nurse.

    • Fotopet54
      Fotopet54 bic24773

      Posted

      Mobile Alabama....yes there were tests, one of which was the MRI brain scan that showed several lesions.  
    • bic24773
      bic24773 Fotopet54

      Posted

      Ah your Dr sounds like my sister's, she was in SA she had an MRI showing lesions but not given me diagnosis, my my mum too but I asked mum's neurologist and she showed us the scan and gave mum her ms diagnosis. In UK without a confirmed dx you cannot access lots of services. I have ms with diagnosis. It may be an insurance decision for you perhaps not to have a dx.

      You more than likely do have ms. Good luck with your journey. 💚💜 Sorry for typos got Bells palsy

    • Fotopet54
      Fotopet54 bic24773

      Posted

      Without a confirmed dx here also cannot access some services. I’m assuming no confirmed dx because I am able to function. But lately ‘normal’ functioning is getting harder and harder.  
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