Unexplained Severe weakness, losing hope

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.

@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/

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.

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.

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

@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 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?

@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.

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.

@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.