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..

Oh dear, this is awful and I'm sorry to hear your story. Perhaps rule out Small Fiber Neuropathy with a skin punch biopsy. You have some similar symptoms. Best of luck to you. Keep us posted please.

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@lydiamay1 Welcome. I'm glad you reached out here. In reading your story, I kept thinking that it seems to be a nerve compression issue. I am a cervical spine surgery patient and had my surgery at Mayo in Rochester after 2 years of being turned away by 5 spine surgeons because they did not know what was wrong. They all could see the spinal cord compression on my MRI, but couldn't connect that with my symptoms. I know it is frightening when your doctors don't have answers or a direction for your treatment and you are left wondering what your future is going to be when all kinds of bad things are happening. As patients, we think our doctors will have answers, but they are human and miss things, and no one knows everything. Doctors are under a lot of stress and don't have much time to devote to patients. Don't give up. Instead, look elsewhere.

I learned to advocate for myself and even found medical literature that explained why my case was different, and none of the doctors who knew me would help communicate this to a surgeon who had just dismissed me and I didn't think he'd listen to me. He'd missed it, and no one wanted to point out his error as he was a director of a surgery center. I never thought it would be that way, and doctors who knew me wouldn't challenge his opinion even though they knew I was right. That's when I came to Mayo, and it was a new experience to find physicians who really knew what was going on and cared, and they worked as a multidisciplinary team and shared results right away with each other and they figured it all out in a couple days. I wish I'd come here sooner instead of wasting two years on doctors who misunderstood the issues. Any of them could have done surgery that would have corrected the issues, but they were afraid of risking their reputations on me and one admitted he didn't know if surgery would make me better or worse. Mayo was very thorough and spent the time necessary to figure out the problem and offer a treatment plan. Neurologists also have specific areas of interest, and I saw one in the spine center at Mayo. My surgeon at Mayo was top notch and he changed my life. I had some similar symptoms as you, hyper reflexes and pain all over my body that was caused by spinal cord compression. You mentioned an MRI of your cervical spine, but no results. Was that normal?

If your doctors don't have answers, it's best to move on. If you can come to Mayo, I would highly recommend that and Mayo tends to see more of the unusual or difficult cases that other places don't want. I never thought it would be that way either, but because there are statistics, online ratings and ratings of successful procedures for not only doctors, but the places they work, it matters to try to be successful. That means that when they don't know answers, it's easier to treat symptoms rather than risk a reputation on a possible failed treatment. For me that meant surgeons that pushed spinal injections instead of surgery to fix the problem, and I would have become disabled if the compression on my spinal cord was allowed to continue. Mayo is rated #1 in the country for neurosurgery. You have to advocate for yourself, and it might be hard to do that as a young person when your specialists have so much more life experience. You have to put your needs first, and keep asking for answers and questioning why your doctors think what they do in a respectful way. Get copies of all your medical records, imaging and reports, and look everything up so you understand what it says. You can't assume your doctors are always looking out for you as their attention is divided among many patients.

Sometimes, it takes a while to get into Mayo, and they give priority to urgent cases. I think you need some real experts to figure this out soon. You can check the insurance that Mayo takes on the website and it may be different at the 3 main campuses. There are also hospitals that partner with Mayo and consult with them that are all over the country, so if you can't get to Mayo, perhaps that is an option. Also, other good places for opinions would be specialists at university teaching medical centers that have medical schools. If you try to be seen at Mayo, you'll need to call and arrange to send your imaging and test results in for review. You could start by contacting the neurosurgery department and they work closely with specific neurologists. Mayo also has the Proton Beam for treating cancers non surgically and you can see this in the Ken Burns documentary about Mayo in treating a toddler with a brain lesion. There is an urgent admission procedure for cases like that. I mention it only so you'll know it's there if needed. We'll be here to support you and share experiences. Let me know if I can answer any questions for you.

Here are some links to check insurance, etc.

Insurance questions https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance
Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/members/map
Neurosurgery https://www.mayoclinic.org/departments-centers/neurosurgery/sections/overview/ovc-20117099

Here are some patient stories and mine is in there too.
https://www.mayoclinic.org/departments-centers/neurosurgery/sections/mayo-clinic-experience-patient-stories/orc-20117109
Specifically my story is https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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@jenniferhunter

@lydiamay1 Welcome. I'm glad you reached out here. In reading your story, I kept thinking that it seems to be a nerve compression issue. I am a cervical spine surgery patient and had my surgery at Mayo in Rochester after 2 years of being turned away by 5 spine surgeons because they did not know what was wrong. They all could see the spinal cord compression on my MRI, but couldn't connect that with my symptoms. I know it is frightening when your doctors don't have answers or a direction for your treatment and you are left wondering what your future is going to be when all kinds of bad things are happening. As patients, we think our doctors will have answers, but they are human and miss things, and no one knows everything. Doctors are under a lot of stress and don't have much time to devote to patients. Don't give up. Instead, look elsewhere.

I learned to advocate for myself and even found medical literature that explained why my case was different, and none of the doctors who knew me would help communicate this to a surgeon who had just dismissed me and I didn't think he'd listen to me. He'd missed it, and no one wanted to point out his error as he was a director of a surgery center. I never thought it would be that way, and doctors who knew me wouldn't challenge his opinion even though they knew I was right. That's when I came to Mayo, and it was a new experience to find physicians who really knew what was going on and cared, and they worked as a multidisciplinary team and shared results right away with each other and they figured it all out in a couple days. I wish I'd come here sooner instead of wasting two years on doctors who misunderstood the issues. Any of them could have done surgery that would have corrected the issues, but they were afraid of risking their reputations on me and one admitted he didn't know if surgery would make me better or worse. Mayo was very thorough and spent the time necessary to figure out the problem and offer a treatment plan. Neurologists also have specific areas of interest, and I saw one in the spine center at Mayo. My surgeon at Mayo was top notch and he changed my life. I had some similar symptoms as you, hyper reflexes and pain all over my body that was caused by spinal cord compression. You mentioned an MRI of your cervical spine, but no results. Was that normal?

If your doctors don't have answers, it's best to move on. If you can come to Mayo, I would highly recommend that and Mayo tends to see more of the unusual or difficult cases that other places don't want. I never thought it would be that way either, but because there are statistics, online ratings and ratings of successful procedures for not only doctors, but the places they work, it matters to try to be successful. That means that when they don't know answers, it's easier to treat symptoms rather than risk a reputation on a possible failed treatment. For me that meant surgeons that pushed spinal injections instead of surgery to fix the problem, and I would have become disabled if the compression on my spinal cord was allowed to continue. Mayo is rated #1 in the country for neurosurgery. You have to advocate for yourself, and it might be hard to do that as a young person when your specialists have so much more life experience. You have to put your needs first, and keep asking for answers and questioning why your doctors think what they do in a respectful way. Get copies of all your medical records, imaging and reports, and look everything up so you understand what it says. You can't assume your doctors are always looking out for you as their attention is divided among many patients.

Sometimes, it takes a while to get into Mayo, and they give priority to urgent cases. I think you need some real experts to figure this out soon. You can check the insurance that Mayo takes on the website and it may be different at the 3 main campuses. There are also hospitals that partner with Mayo and consult with them that are all over the country, so if you can't get to Mayo, perhaps that is an option. Also, other good places for opinions would be specialists at university teaching medical centers that have medical schools. If you try to be seen at Mayo, you'll need to call and arrange to send your imaging and test results in for review. You could start by contacting the neurosurgery department and they work closely with specific neurologists. Mayo also has the Proton Beam for treating cancers non surgically and you can see this in the Ken Burns documentary about Mayo in treating a toddler with a brain lesion. There is an urgent admission procedure for cases like that. I mention it only so you'll know it's there if needed. We'll be here to support you and share experiences. Let me know if I can answer any questions for you.

Here are some links to check insurance, etc.

Insurance questions https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance
Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/members/map
Neurosurgery https://www.mayoclinic.org/departments-centers/neurosurgery/sections/overview/ovc-20117099

Here are some patient stories and mine is in there too.
https://www.mayoclinic.org/departments-centers/neurosurgery/sections/mayo-clinic-experience-patient-stories/orc-20117109
Specifically my story is https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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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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@rwinney

Oh dear, this is awful and I'm sorry to hear your story. Perhaps rule out Small Fiber Neuropathy with a skin punch biopsy. You have some similar symptoms. Best of luck to you. Keep us posted please.

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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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@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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Agreed. Wondering if there are multiple happenings/diagnosis. If you have not heard of Chasing the Cure, please Google it! Ann Curry hosts a weekly live broadcast of severe situations that people can't find proper diagnosis for. In some cases they live in remote areas (one case was a mother and daughter from Alaska) where top medical attention is not offered or some people simply can't afford places like Mayo. In any case the approach is to have a full world wide live broadcast tapping into all networks of social media to have people weigh in with thoughts or common experience. Also, a multi disciplinary team if Doctors (some from Mayo) brainstorm and trouble shoot for a path forward, most always getting patients what they need for free. It is amazing! Please look it up.
Rachel

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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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@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.

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Hello, @lydiamay1 – I wanted to add my welcome to Mayo Clinic Connect. Glad you've connected with @jenniferhunter and @rwinney. I also thought that @jl1 @de9g @machak @lily2013 may relate to your situation of a long wait for a diagnosis. @becsbuddy @kennywood also may have some thoughts for you.

The extreme weakness in your arms and hands, as well as fatigue, difficulty walking without falling and the brain zaps sound difficult and very disruptive to your life, especially with young children. I can imagine it is hard to not get any answers yet on why this may be happening.

How are you feeling today?

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@lydiamay1 Hello and welcome.@lisalucier asked m to join the conversation because I, too, had a similar problem. Mine was all GI but when they did an MRI (finally!), it looked just like MS. Except I’m too old for MS. I do know that MS is very difficult to diagnose because symptoms can be vague. I was almost non-responsive and don’t remember my first hospital admission. I had a brain biopsy which confirmed CLIPPERS (chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids). It’s a very rare autoimmune disease that causes lesions on the brain. I now get my care at the University medical center. You might check on university medical centers or medical schools. You can also see if there are some rheumatologists in Alaska. It was a long, hard road because no one could connect the pieces of the puzzle. I see that @rwinney mentioned a TV show you might watch. There is also a Dr. Lisa Sanders who is very involved in researching and trying to solve unusual cases. She’s in New Haven, Connecticut. Google her and you should find an email address.
I really wish you luck as the unknown is so difficult and your a young mother. Please stay in touch with us and let us know what happens.

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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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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.

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@lydiamay1 I'm so sorry you are so young and caring for a child through such worry must be difficult, so my heart is with you. I haven't experienced hand/arm weakness but my muscular and joint pains and other strange symptoms have brought me into digging a lot and MS did come up for me so I would get extra opinions just to be certain. Note that MS and Lyme can look the same in both some of the symptoms and lesions from what I've read. Get an Igenex Lyme Western blot or panel; they are pricey out of pocket but typical Lyme tests are very iffy whether sensitive enough to show true results. I know it's controversial but some believe MS is Lyme undiagnosed and even ALS can be caused from a Lyme tick borne pathogen. Either way, worth considering. The other thing to look into is Charcot Marie Tooth Disease, as I guess it can have MS like symptoms and demyelinating of the brain. Be your own advocate, genetic testing if nobody is giving you answers. I hope you get some answers and a treatment plan right away.

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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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