I can't get properly diagnosed and I'm spiraling

Posted by sasquatch1031 @sasquatch1031, Feb 4, 2023

I'm a 32yr old male with no history of anything and never been on any medications either. For a few years now I've been suffering with symptoms that seem to be getting worse as time progresses. I've seen multiple neurologist and rheumatologist. Each one has a different speculation and each one wants to put me on a pill with no straight answer. I refuse medications because each one has bad side effects. I need answers, not pills but that's all every doctor seems to want to do with me. A few years ago I started feeling very small shakes in my legs every once and a while. As time went on it started getting more frequent. I'm at the point now where I feel constant little tremors in my legs daily. Sometimes in my chest and even jaw. I feel it all most when I lay down to try to sleep. I feel extremely weak and tired. My sleep patterns are horrid. And my most recent symptom is driving me crazy. I keep getting a weird sensation that feels like it starts in my head and then shoots an uncomfortable sensation down to my left foot and makes my toe muscle twitch. I'm not feeling pain. Just extreme discomfort. I feel this when I lay down and close my eyes. It's keeping me awake. I have no answers for anything I'm feeling and I'm at a loss with all of this. Can anyone shine some type of light on this? The only thing that came up was Small Fiber Neuropathy when I had a skin biopsy done. But that was it. My primary care physician is saying I need to see a psychiatrist to rule out this being anxiety. I can confirm that this isn't anxiety. Everyone keeps tossing me around due to them not being able to get a proper diagnosis. Every doctor runs some bloodwork, 1 or 2 test and then wants to try out pills without any answers. Then when I deny any medications they say that there is nothing more they can do. Also, if I focus on the sensation, it'll consistently happen and then my body goes into panic mode. In which case I wind up shaking and feeling like I'm having a panic attack.

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@nukhan

Sorry to hear you are going through this. I have similar situation. When my feet burning sensation started in 2017, the first neuro physician told me that the burning sensation as per my lumbar MRI was due to spin issues. I initially focused entirely on my back issues until Mayo Clinic diagnosed me after one year with ideopethic small fiber neuropathy. According to them while I do have spine issues, they are not serious enough to cause burning sensation, severe pain and numbness of such degree. Since then I have been experiencing progressive deterioration on a daily basis despite all kind of remedies and therapies including major diet changes, intermittent fasting and supplementation for extended period of time. The situation now is that mobility has become a huge challenge for me. I cannot walk from my bed up to the bath room. I am confused whether my first neuro physician was right in blaming my spine to be the culprit becsuse I didn't see any improvement after being diagnosed by Mayo clinic. I can safely say that one of them misdiagnosed me. I am now thinking that I need to start concentrating on my spine issues again although I don't have any major back pain.
I wish you and all those suffering from this debilitating disease a permanent relief.

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Nazir - Glad to hear you don't have major back pain. My situation is similar except in trying to walk distances...about 3 - 4 blocks. I'll sit for about 2 minutes get up and move on. At times, I've used CBD cream which helps. Mobility is an increasing challenge. According to my wife, I am stubborn which in this case I remind her can be a benefit because I will push to keep moving. I think it is hard to look back and second guess what could have been when today and what we do going forward is more important. Keep moving the best you can and stay safe!

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Have you considered RLS? That's what it sounds like to me. Feels like being tortured! Mine was helped a lot by Sinemet but the wearing off meant that I still spent half the day/night with these horrible sensations. The Neupro patch has managed my symptoms 24/7 so I can get a good night's sleep. Good luck!

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Have you ever heard of a supplement called Alfa Lipoic Acid? If not you should check into it. Unfortunately it didn't work for me but nothing seems to work for me. If you look into it learn that there are bs alpha Lipoic out there! Shop for stabilized Alpha only. The real stuff could help you. Good luck. You can do it.

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@janicemjackson

Thank You Chris~~~You and I would do well to become better acquainted! Kind regards, Janice

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That is a good idea. Let's just do that!

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@njed

janice - In many ways, in my opinion, this all comes down to liability issues. A surgeon must have a concrete feeling that an operation will improve the standard of the health and life for the patient. And unless he/she feels that can be accomplished with minimum risk, little chances of a procedure being performed. In my case, I walk into the office of a neurosurgeon, no assistance, no walker and yes in pain. If a procedure is performed and after that, I'm worse off, then what. Two top neurosurgeons in my area told me the same thing.

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I think this is a common situation. For me, a neuromuscular specialist said that two EMGs show that I have a radiculopathy, but a spine surgeon looked at my MRI and said no. My neurologist is falling back on the idiopathic neuropathy (non) diagnosis. I’m not sure where to take it from here.

I’m going to meet with another neurologist and see what he has to say, but I’m becoming resigned to the idea that I will never get a real diagnosis: idiopathic doesn’t count.

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