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lydiamay1 (@lydiamay1)

Unexplained Severe weakness, losing hope

Brain & Nervous System | Last Active: Sep 8, 2020 | Replies (22)

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@lydiamay1

Thank you so much for your response! My PCP originally thought it may be spinal cord compression and that was the reason for the C spine imaging. That MRI ended up being normal, I also had a Thiracic spine MRI that was normal.
My Neurologist said they aren’t ruling out MS and want to repeat a brain MRI in six months but also said they are almost positive it’s not MS.
I got a second opinion from a different neurologist just to see if they could come up with anything else and they basically said I’ve had all the tests they could think of done already and just to recheck brain MRI in six months…
It’s hard because I generally always feel weakness in my arms but the worsening of symptoms comes and goes.
The last time it was bad was when I could walk without falling because my legs were so weak, my face was numb, my arms and hands were so weak I could barely lift anything, the scariest part for me was that my cognitive function was terrible, I could barely think…
I live in Alaska and unfortunately specialists here are far and few between and are usually not very good.
I do like my neurologist because she seems to care but she is running out of ideas and things to test.
I feel so hopeless right now.. if she can’t figure it out I’m not sure what I’ll do … I know I can’t afford to go to mayo because I don’t have insurance, I’m just looking for some Hope here.. some idea of what this may be before things get even worse.

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Replies to "Thank you so much for your response! My PCP originally thought it may be spinal cord..."

@lydiamay1 There are 2 facilities in Alaska in the Mayo Clinic Care Network. Would you be near those? Another thing you should ask about is testing for Lyme disease if that hasn't been ruled out by your neurologist. It can imitate other diseases like MS and cause neurological problems. The testing for Lyme and the other infections that go with it are not very accurate and can miss Lyme altogether, and it may take a few years of antibiotic treatment to get rid of it. The Lyme Literate doctors are in the ILADS group and a lab with better testing is Igenex.com. The lab may be able to help you find a specialist. Here is a link about the issues with Lyme disease. https://www.vox.com/the-highlight/2019/6/18/18677511/lyme-disease-diagnosis-health Unfortunatley, Lyme is misunderstood by many in the medical field, so you do need an opinion from an ILADS specialist if you think you may have it. You can find a provider search on their website. Lyme can go un-diagnosed for years.

Hello @lydiamay1,

I am so sorry that you are experiencing such difficult symptoms. I can only imagine how hard it must be on you as a young mother. Neurological difficulties can be very difficult to diagnose as there is an overlap of symptoms of so many different disorders. I have a neurological disorder which does not manifest itself with the typical symptoms and I went a very long time without a diagnosis.

I'm just wondering, have you ever tracked (or journaled) your more severe symptoms (such as the time you fell, etc.)? It might be good to do so. Here is an idea:

Jot down a note as to the time of day the symptom occurred, what sort of activities you had been doing during the day, any other symptoms before.

In doing this, you might find some patterns of when the symptoms are the worst. For example, I found that toward the end of the day (and definitely end of the week), I was beginning to have gait problems (walking to one side rather than straight).

How is your fine motor coordination (working with jewelry clasps, getting small pills out of bottles, etc.)?

At Connect, we all learn from each other's health journeys and I hope that you find some answers. A perplexing problem such as this carries with it a great deal of anxiety.

I had symptoms similar to yours. It took them 11 years to discover I had a pituitary tumor. One in five people have a pituitary tumor but not so bad that they notice. If they think you have MS, please read a book called The Candida Cure by Ann Boroch. You can ask me questions about this and I’ll be happy to answer. The doctor that wrote the book was in a wheelchair for 24 years with MS! I’m happy to talk about the pituitary tumor also.