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..

Are you taking any type of benzodiazepine (valium,xanax, etc)? or have you recently quit taking any bentos? Benzo withdrawal can cause all the symptoms u speak of….

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I could be reading my own story. Very, very similar. I was seen at Mayo in May (ha! always laugh at that) and they diagnosed my Dysautonomia and left leg neuropathy, and pelvic dyssenergy. I already had diagnoses from my local specialists of Gastroparesis and esophageal dysmotility. All being idiopathic, as in they have no idea why it's happening. All symptoms of something "bigger" as my drs say. Since mid Sept, I lost 20+lbs, and very similar weakness issues as you described. I still work full time, but every day gets harder. I'm couch-bound today and have to trek via train, subway and walking to get to my Neuro appointment tomorrow for my EMG and if that's normal, a skin punch biopsy to look for Small Fiber Neuropathy (I saw someone else refer). I've had all your same testing except a lumbar puncture. When they ruled out MS, they stopped after the initial EMG and MRI as they were normal. LEMS diagnosis was ruled out for me, but they'd wait until your Paraneoplastic panel comes back before probably confirming that. I tested negative for that marker.

Like you, I've had very compassionate doctors, especially my current Neuro whom is doing everything she can to find out what's going on. Every day, I notice more muscles that are newly fatigued and now have twitching and Charlie horse-like cramps in all my extremities. Typing is painful now too just over the last few dats. It's scary, so I can absolutely 100% empathize with you. I'm also a nurse with experience in evidence-based research, so it's a blessing and a huge curse at times trying to look up latest research, however, the Neuro has encouraged me to help HER find something, so it's almost like another job. A Dr. House like job lol.

Here's how I see it, and I've only come to recently embrace my thought process. Whatever is going on, I know my doctors are doing everything they can to find out what's going on. I'm going into the city to essentially rule out the worst of the worst diagnoses, one being ALS, another Myasthenia Gravis. The rapid progression of symptoms is terrifying, but all I can do is keep going. Unfortunately, my current status, is just my new normal. If my testing tomorrow is normal, I'm going to apply for the NIH Undiagnosed Disease program with my dr's help. Funding just got cut though, so who knows how long it will be around. They keep your genetic profile if even they can't find out what's wrong and if they ever diagnose a new disease or find a biomarker, if you match…you can see where I'm going.

Anyway, in the end, so long as I know we, as in me, my family and my doctors, who are all amazing, did everything we can to get to the bottom of all this, I'll be okay. It's awful, I know. I wish you the absolute best. I really do. For now, keep your mind busy; binge TV, movies, read…I have 2 kids, 9 and 7, so they keep me entertained. My husband is also my third child. We have fun, even if I'm on the couch or stuck in bed.

By the way, you said you live in Alaska. I never had a real bucket list until a few months ago, but the northern lights are top 3. Even if I'm in a wheelchair, I'll get there 🙂 Also, there's a homeopathic clinic in Switzerland known for their ability to help "reboot" your system. Worth a shot if I'm still an anomaly.
Good luck, best wishes, stay hopeful and positive, and happy holidays!
Alli

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@rnanderson

I could be reading my own story. Very, very similar. I was seen at Mayo in May (ha! always laugh at that) and they diagnosed my Dysautonomia and left leg neuropathy, and pelvic dyssenergy. I already had diagnoses from my local specialists of Gastroparesis and esophageal dysmotility. All being idiopathic, as in they have no idea why it's happening. All symptoms of something "bigger" as my drs say. Since mid Sept, I lost 20+lbs, and very similar weakness issues as you described. I still work full time, but every day gets harder. I'm couch-bound today and have to trek via train, subway and walking to get to my Neuro appointment tomorrow for my EMG and if that's normal, a skin punch biopsy to look for Small Fiber Neuropathy (I saw someone else refer). I've had all your same testing except a lumbar puncture. When they ruled out MS, they stopped after the initial EMG and MRI as they were normal. LEMS diagnosis was ruled out for me, but they'd wait until your Paraneoplastic panel comes back before probably confirming that. I tested negative for that marker.

Like you, I've had very compassionate doctors, especially my current Neuro whom is doing everything she can to find out what's going on. Every day, I notice more muscles that are newly fatigued and now have twitching and Charlie horse-like cramps in all my extremities. Typing is painful now too just over the last few dats. It's scary, so I can absolutely 100% empathize with you. I'm also a nurse with experience in evidence-based research, so it's a blessing and a huge curse at times trying to look up latest research, however, the Neuro has encouraged me to help HER find something, so it's almost like another job. A Dr. House like job lol.

Here's how I see it, and I've only come to recently embrace my thought process. Whatever is going on, I know my doctors are doing everything they can to find out what's going on. I'm going into the city to essentially rule out the worst of the worst diagnoses, one being ALS, another Myasthenia Gravis. The rapid progression of symptoms is terrifying, but all I can do is keep going. Unfortunately, my current status, is just my new normal. If my testing tomorrow is normal, I'm going to apply for the NIH Undiagnosed Disease program with my dr's help. Funding just got cut though, so who knows how long it will be around. They keep your genetic profile if even they can't find out what's wrong and if they ever diagnose a new disease or find a biomarker, if you match…you can see where I'm going.

Anyway, in the end, so long as I know we, as in me, my family and my doctors, who are all amazing, did everything we can to get to the bottom of all this, I'll be okay. It's awful, I know. I wish you the absolute best. I really do. For now, keep your mind busy; binge TV, movies, read…I have 2 kids, 9 and 7, so they keep me entertained. My husband is also my third child. We have fun, even if I'm on the couch or stuck in bed.

By the way, you said you live in Alaska. I never had a real bucket list until a few months ago, but the northern lights are top 3. Even if I'm in a wheelchair, I'll get there 🙂 Also, there's a homeopathic clinic in Switzerland known for their ability to help "reboot" your system. Worth a shot if I'm still an anomaly.
Good luck, best wishes, stay hopeful and positive, and happy holidays!
Alli

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Wow, what a great attitude and out look! You make it sound so easy, even though I know it's not.

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Thank you so much, I really appreciate that. I'm not gonna lie, it took a while to get here with that attitude. I had a near death experience after surgery for my gastroparesis, and it was like a second chance, despite the current situation. Worst but greatest thing that ever happened to me. I've done a lot of soul searching. I've realized a few things. I'm 32, and it sucks. BUT, I met my soulmate when I was 16 and we've been together ever since. It took me a while to realize this but today, I know….Some people go their whole lives without knowing what that's like, and I got it. THAT is what I hang on to, along with the memories I'm making for my kids. I have no regrets, no matter what. I also cry a lot, but at this point, whatever. haha. Laughter. Laughter is key. And always with Grace. Life is good <3

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@lydiamay1

Thank you! I’ll mention this to my neurologist. The only thing I see a bit different is mine is mostly a severe weakness as apoposed to neuropathy and it’s mostkg in my arms and hands.

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Hello @lydiamay1,

It has been a while since you last posted. I hope you are doing better.
Have you had any success in finding a diagnosis and/or treatment plan for the weakness you've experienced?

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@ccozad

a month ago my sister-in-law started feeling week. My bro took her to the nearest clinic who sent her to the nearest hospital. That hospital sent her to Kansas University Med. She was in the hospital for eight days undergoing tests to diagnose the reason she was so weak in all of her muscles. They took a muscle biopsy and suggested she needed to be transferred to a facility to wait further developments. However, she and my brother indicated they wanted to go home so the hospital agreed. After being home for two days she kept getting weaker and weaker, couldn't eat. Went back into hospital by ambulance this time. I believe they have her on some very heavy meds. Anyway, I am concerned about her muscle atrofy. Initially the docs thought it was caused by a med she took to combat high cholesterol, she doesn't smoke. However, now they are having second thoughts. She seems to be getting worse by the day and concerned the diagnosis may come to late. Any ideas?
Clyde

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@ccozad I'm so sorry to hear about your sister in law. Welcome to connect we aren't Dr,s but help with what we can .If you concerned about muscle atrophy I would suggest anyone that is in there just rub her legs and arms to keep the muscles moveing Talk to the Dr about maybe P .Therapy to come in also .I hope she is getting some fluids or can she swollow any broth chicken beef vegetable get some nourishment in her Let us know how she is doing

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a month ago my sister-in-law started feeling week. My bro took her to the nearest clinic who sent her to the nearest hospital. That hospital sent her to Kansas University Med. She was in the hospital for eight days undergoing tests to diagnose the reason she was so weak in all of her muscles. They took a muscle biopsy and suggested she needed to be transferred to a facility to wait further developments. However, she and my brother indicated they wanted to go home so the hospital agreed. After being home for two days she kept getting weaker and weaker, couldn't eat. Went back into hospital by ambulance this time. I believe they have her on some very heavy meds. Anyway, I am concerned about her muscle atrofy. Initially the docs thought it was caused by a med she took to combat high cholesterol, she doesn't smoke. However, now they are having second thoughts. She seems to be getting worse by the day and concerned the diagnosis may come to late. Any ideas?
Clyde

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@ccozad

a month ago my sister-in-law started feeling week. My bro took her to the nearest clinic who sent her to the nearest hospital. That hospital sent her to Kansas University Med. She was in the hospital for eight days undergoing tests to diagnose the reason she was so weak in all of her muscles. They took a muscle biopsy and suggested she needed to be transferred to a facility to wait further developments. However, she and my brother indicated they wanted to go home so the hospital agreed. After being home for two days she kept getting weaker and weaker, couldn't eat. Went back into hospital by ambulance this time. I believe they have her on some very heavy meds. Anyway, I am concerned about her muscle atrofy. Initially the docs thought it was caused by a med she took to combat high cholesterol, she doesn't smoke. However, now they are having second thoughts. She seems to be getting worse by the day and concerned the diagnosis may come to late. Any ideas?
Clyde

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Hi @ccozad, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion in the Brain 7 Nervous System goup. @lydiamay1 asked simiar questions seeking answers. If you click VIEW & REPLY you can scroll through the past posts to see if there are any similarities with the symptoms that your sister-in-law is experiencing.

I can understand your concern. Mayo Clinic Connect is an online community where patients can share experiences. While we can't provide a diagnosis, we can help you figure out what questions you might wish to ask the specialists.

Ccozad, what tests has your sister-in-law had? Is she being kept in the hospital for observation and testing?

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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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