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..

Interested in more discussions like this? Go to the Brain & Nervous System group.

Hello, @lydiamay1,

As it has been a while since you last posted, I was wondering how you were doing? Have you checked in with your neurologist lately?

I would enjoy hearing from you when you have time to provide an update/

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I had similar symptoms and I can tell you what I had – maybe it will inspire your doctors. I had a combination of things going on. I got so weak I could not walk and I could not breathe without a ventilator. I was confused all the time, couldn't remember much, I had vertigo, all over general weakness – I was a hot mess. First they diagnosed me with myasthenia gravis. Then they found a pituitary tumor that had shut down my adrenals, my thyroid, my Human Growth Hormone (HGH), and gave me diabetes insipidus. I am taking thyroid, HGH, and I am taking cortisol for the adrenals. I was so bad off by the time I was diagnosed, I was sleeping 23 hours out of 24 every single day. I couldn't drive or use the stove – and it was because of my adrenals being shut down. A pituitary tumor is in 1 out of 5 people – but most people don't get symptoms. If your problems might be endocrine – get yourself to the nearest teaching hospital – find a big university that has a medical school and go there if at all possible. But here is were it gets gooey. I also have an autoimmune skin disease and I have been kept on antibiotics for years at a time. Then they gave me cortisol for the adrenals. I got a problem doctors will not talk about. It's called Candida Overgrowth. We all have candida in our gut. But if you have even one dose of antibiotics, steroids, hormones, or even if you are stressed out – the balance between good bacteria and candida can get out of whack, and then the candida begins overgrowing. (If you've ever had a vaginal yeast infection or thrush – that is candida!). Doctors will not talk about this disease because it is caused by their drugs. You can do this on your own. There is a book I used called The Candida Cure by Ann Boroch. It's maybe $12 on Amazon. I got that book and changed my life in one day. It wasn't easy. You have to go off all forms of sugar. It seems impossible but it can be done. In April 2020, it will be five years for me – and I will never go back. I finally have the brain fog, fatigue, weakness, inflammation, everything is gone. Even the metaplasia cells that were in my gut (precancerous) are gone! That is a very common problem people have. Looking back on it, I think my father suffered terribly with Candida Overgrowth. You may notice heartburn, gas, bloating, brain fog, an intolerance to certain smells like cigarette smoke and perfume, visual disturbances, weakness – the list is so long. If you do not treat candida overgrowth, it can lead to diseases like multiple sclerosis, myasthenia gravis, Alzheimer's, cancer – the list is really long. The woman that wrote the book was a nutritionist and a doctor; she suffered from MS for decades before she figured out how to cure herself. This is a relatively new problem since antibiotics, steroids, hormones, etc. haven't been in use all that long. In addition to not eating sugar, you need to take probiotics and antifungals. I chose to go with herbal antifungals as prescription anti fungal drugs are very difficult to take. If you think you may have this, get the book and read it. I know I was on my way to having myasthenia gravis – they even took out my thymus gland. I wish you all the best and I'm here if you have any questions. Whatever it turns out to be, I hope you can get it under control. You need to be there for your child and family. Don't let anybody stop you from getting to the bottom of this. I was stopped a couple of times by doctors who simply would not listen to me. A neurologist that was retiring told me I had a pituitary tumor when I was 36. He told me to tell my doctor he said that and to order an MRI. My doctor told me it was ridiculous and he put me off. Twenty-five years later I had brain surgery for a pituitary tumor (don't worry. – they can usually go through your nose instead of shaving your head). And NO doctor would support me on the candida overgrowth – until I told my infectious disease doctor – and she has been very supportive and full of good advice on candida overgrowth (infectious disease doctors see people who are VERY ill for long periods of time – like AIDs patients, etc. – people whose immune systems are down and opportunistic diseases are striking the body – so they know about candida overgrowth). You have a problem – don't stop until you are getting it fixed. If you can't find anybody else to treat you – find a way to get to a functional doctor. A functional doctor gets to the root cause of a problem. They are very expensive. That's why I did the candida diet myself. The book gives you all the information you need. But if you find you want support, let me know.

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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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