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lydiamay1 (@lydiamay1)

Unexplained Severe weakness, losing hope

Brain & Nervous System | Last Active: Sep 8, 2020 | Replies (22)

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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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Replies to "@lydiamay1 Welcome. I'm glad you reached out here. In reading your story, I kept thinking that..."

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.