Anyone provide any advice?

Posted by yennykates @yennykates, Oct 5, 2023

In April or 2022, I went to the ER in intense pain. My head, shoulders, and arms were pulled into the fetal position. I was discharged with "acute back pain" and later diagnosed with rhabdomyolysis and myositis. Since, all signs of rhabdo and myositis have disappeared and I was clinically diagnosed with an adverse event to rocephin which resulted in, or exacerbated, small fiber neuropathy. I continue to get muscle cramps, have had no increase in stamina or endurance, and have started losing balance and coordination. Neural surgeon has cleared me of any neck injury. Neural psychiatrist has cleared me of any brain disorder. I am being sent to a neural muscular specialist soon, but have had nothing but tests and no answers for over a year. I am open to any advice or research, any suggestions on tests to check for. I only found one post similar to mine but the user is inactive. Cannot post the link due to new account.

Interested in more discussions like this? Go to the Neuropathy Support Group.

SusanEllen66 | @SusanEllen66 | Oct 5, 2023

@yennykates
They diagnosed you with small fiber neuropathy?
You’re going to a neurologist soon, correct? Hopefully they will test your nerves and evaluate your neuropathy.
Once you are tested, you will have a better understanding of what is causing your symptoms.

John, Volunteer Mentor | @johnbishop | Oct 5, 2023

Hello @yennykates, Welcome to Connect. I can't begin to imagine the struggles you have been through trying to get some answers and a treatment that helps. A lot of us with neuropathy have problems with losing balance and coordination so hopefully others that have symptoms similar to yours will respond and share their experience.

I'm wondering if this was the older post/discussion you found that was similar:
--- Undiagnosed Neuromuscular Disorder: Searching for Answers: https://connect.mayoclinic.org/discussion/undiagnosed-neuromuscular-disorder-searching-for-answers/

I also found this 2019 podcast that might give you some insight to your upcoming appointment with a neuromuscular specialist.
--- Neuromuscular Diseases: https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/neuromuscular-diseases/.

Do you know how long it will be until your appointment? Can you let us know what you find out?

Ray Kemble | @ray666 | Oct 6, 2023

Hi, yennykates (@yennykates)

I found the best solution is to settle on a specialist who listens well and is welcoming of things you've learned. I went through a period of deep disappointment with various specialists I'd consulted. None seemed too inspired by my disease. It took me a while to realize it wasn't that the specialists didn't care – in most cases, they cared a great deal – but that they, too, were disappointed at not having a magic pill to offer me. I accept that my PN is incurable (at least at this time); nevertheless, I'm still bound to have questions, and I'd like to be able to meet with a specialist (in my case, a neurologist) who at least leans in when I ask my questions and is honestly interested in helping me to find the answers. Also, as I'm reading up as much as I can on PN (authoritative, science-based information), I want a specialist who shows respect for the things I've learned. All in all, I suppose you could say that I'm in need of companionship as I live through this experience of having PN, ideally companionship from someone with some medical know-how.

Good luck to you in your quest! This is a challenge, I know.

Ray (@ray666)

Justin McClanahan, Moderator | @JustinMcClanahan | Oct 6, 2023

@yennykates - New members aren't allowed to post links for a certain length of time to prevent bad actors and spammers. Here is the discussion you were trying to share, https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-and-muscle-tightness/.

yennykates | @yennykates | Oct 7, 2023

I have been seeing a neurologist for over a year. They say the SFN does not explain my symptoms of loss of balance and coordination. I received a cognitive evaluation which showed decreased response time. 1 to 6 percentile. Given my employment history as an Air traffic controller, this would be significant. Neurologist also said it does not explain the muscle cramps and exhaustion. Neurosurgeon said no neck injury and wants to do a diagnostic nerve block. I am scheduled to see the neuromuscularskeletal specialist eventually. Waiting on insurance to clear. I don't have the worst of the worst, so I consider it lucky so far. Cancer screening, demyelinating disorders, other neuropathies all were clear. I've have all CDC recommended DNA tests. I have not had COVID or the vaccine. I have been refused MRI with contrast, as "it will not help". Heart and blood pressure are good. All vitamins good.

@JustinMcClanahan Thank you for the addition.

@ray666 I feel as though my doctors do their best. They all seem to have a lot of patients and I know how easy it can be to miss small things sometimes. Even for the most caring.

@johnbishop I have seen that post before. I've been reading everything I can find, and only one post was close. It was posted above by John. I will listen to the podcast shortly. Thank you for it.

@SusanEllen66 They diagnosed via a muscle biopsy. Just doesn't meet all of my symptoms. Migraines, stamina loss, waist is decreasing in size with no weight loss, no muscle gain, muscle cramps, tingling down my spine despite increasing my gabapentin. I will say, the Internet explained it a bit more than my doctor, but that may have been anxiety induced memory loss haha.

louise67 | @louise67 | Oct 17, 2023

I also had every test you could have for 2 1/2 years before being diagnosed. Sometime I saw 4 or 5 Dr's a week. Look for a neurologist who specializes in nerves that make the body move, a neurophysiologist. I have gotten worse, but just knowing what was wrong was a tremendous relief