Unexplained Severe weakness, losing hope

Posted by lydiamay1 @lydiamay1, Sep 8, 2019

Here’s my story, I’m 28 years old...
For a few years I have noticed that I’ve had to concentrate hard sometimes to move my hands and I was get weird sensations that felt like zaps in my brain multiple times a day. I went to see a doctor for this and they ordered a brain mri without contrast ( because I was pregnant at the time) and it was normal.... the symptoms eventually got better...
fast forward a few years later to June of this year... I started getting extreme weakness in my arms and hands to the point where I was dropping things constantly, I also had overall fatigue.. I chalked it up to lack of sleep because after about a week it started getting better..about two weeks after it got better my symptoms started coming back but worse than before. I decided at that point to go to an urgent care as it was the weekend. They did blood tests for ANA, RA, B12, CBC, CMP and more and everything came back normal.. they recommended I get a primary care provider.
I followed up with a PCP about a week later and she did a lot of reflex testing and said I have hyper reflexia and a positive Hoffman’s sign in both hands. She ordered a brain mri and an mri of my C spine.
I got the MRIs done on a Friday and my PCP called me the following Monday saying they found a lesion in my brain and to go back and get a brain MRI with contrast.
I went the following day and she called with the results saying they were “unspecific” and referred me to a neurologist. I started seeing them and they originally told me they thought I had MS but couldn’t confirm it yet, they started me on a high dose of infusion steroids... I felt good the first few days but on day three ( it was a Friday) I was very tired.. by Sunday I couldn’t walk without falling my legs were almost completely numb and so weak, my arms and hands were severely weak and my cognitive function was extremely impaired... I felt great dispare with these symptoms as I had no idea if I would get better or not...
through the following week I slowly started feeling a bit better. I called my neurologist on Monday and told her what I was going through so she had me come back into the office to check on me.. she said she at that point didn’t think I had ms and said she would figure out what was going on with me.
She called me in that wendsday and told me that after a lot of research she thought I may have Lambert-Eaton syndrome.. she scheduled me for a lumbar puncture, EMG testing and VGCC blood testing..
I’ve had all done at this point, VGCC was normal, EMG was normal and lumbar puncture has no onicological bands or anything indicating ms. I’m still waiting on the Paraneoplastic panel to come back.
I’m feeling so hopeless at this point as they’ve done so so so much testing and all of it is normal but it seems like every time my symptoms come back they come back worse and worse and I don’t know when their going to hit me...
I am terrified my neurologist won’t fogure out what is wrong.. she is running out of ideas..
I’m hoping and praying someone on here may have some ideas as to what is going on with me..

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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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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.

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Thank you for your reply. If you remember back that far, did this come on really quick? I'm not the one having the difficulty, its my sister-in-law. It came upon her quickly. The clinic took a blood sample and discovered one of her blood county was extreemly high, not sure which one it was. They had difficulty getting the count down, which they did from 12,000 to 6,000. That is why they thought they were on the correct diagnosis and meds to take care of the problem. However, back to square one with no difinitive answer yet.

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