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All my symptoms point to MS...

I currently have every single symptom of MS. All the many blood testing I’ve done came back normal except for my white cell count, which was very high. I’ve had a nerve testing done and an echo cardio gram to rule out any infection in or around my heart, its strong and healthy with no blockages. Could I still have MS even if I had an MRI done years ago due to slurred speech and stuttering, along with problems with losing balance during walking and falling down several times and was diagnosed as Ataxia? My doctor also found my brain had shrunk. I was 43/44 at the time and my brain size was that of a 60 year olds. My doctor said my previous crystal meth use was probably the contributing factor for the brain shrinkage. I’m now 48 and I’ve been clean for over 15 years now. I’m wondering now why he hasn’t ordered another MRI. He explains away all my symptoms saying it’s simply nerve damage and my other symptoms having nothing to do with each other. So I’m very frustrated! All the MS symptoms started with a rash, September 3, and just kept progressing and adding one after another. Right now at this very moment have a tightness in my upper chest that makes it uncomfortable to breath when I inhale (new symptom). I asked to be referred to a neurologist but have yet to hear of the referral. I have state health care so I need one. I’m also wondering if I’d qualify for disability without a definite/confirmed disability of MS and only nerve damage? Mahalo(Thank you in Hawaiian 🌺😉 for any advice or help!!
Aloha and tease care!!

  1. Thank you for sharing your story, littlebrowngal808. It's understandable that a diagnosis hasn't been made considering your medical history. But I urge you not to decide you have MS.

    From what you've shared, other factors are at play that can produce many symptoms that MS shares. Infection, for example. I just battled one for a year that worsened my MS symptoms. Once the infection was resolved, my MS symptoms went back to baseline.

    Inflammation that shows in the blood serum does not indicate inflammation in the brain and spinal cord. You must get a lumbar puncture to test for inflammation in the spinal fluid as a possible indicator of MS.

    You've had a rough time convincing doctors to stop blaming drug addiction for your nerve damage and corresponding symptoms, and it might continue. Keep pushing for that referral to a neurologist, only they can order diagnostic tests for MS if the clinical exam reveals abnormalities.

    Re qualifying for disability w/o diagnosis: I think that's possible but you have to have a solid paper trail of doctor appointments and medical notes and a doc willing to go to bat for you. If you haven't already, start a log of your symptoms and keep seeing doctors. Disability claims must be backed up with paperwork and a doctor's evaluation that you cannot work full time.

    You might already know that you can be prescribed symptom meds w/o a diagnosis. I hope you'll find relief and some answers very soon. Keep us posted. --Kim, Team Member

    1. littlebrowngal808 Something I might add to the great advice Kim shared is that if your current doctor is not being supportive, you might consider a different primary care doctor. Not every doctor is the best fit for your personal needs and if the one you have now is hung up on your past, maybe you need to see one who has fresh eyesight and only sees your current symptoms. Can you change your primary care doctor, get a new baseline H&P from that person and see whether that might result in a referral? I've found that sometimes when someone knows you, they just see what they expect to see and not what's really there. Donna Steigleder, Moderator

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