I need help! Just at a loss and confused. I'm a mystery!

@chrisfd welcome Chris. I can certainly relate to your list.
Now, I’m not a doctor.
What you are describing sounds like a few things I have and others describe.
My first thought for you is peripheral neuropathy. The tingling, muscle weakness, trouble walking, electric shocks, the feelings of hot and cold, all are apart of neuropathy.
The pain in your arms, and other areas of your body could be fibromyalgia.

Any thoughts about what I have written?

Let’s see what other’s comments are.

@SusanEllen66

I'll definitely bring it up to my doctor! I have a family history of neurological issues like parkinson's disease. I highly doubt that I have parkinson's but my brain was going more to like multiple sclerosis mainly because of flare ups during high heat weather.

You should ask for a Brain MRI w & wo contrast w CINE, to assess the flow of CSF. This is what I’d do in your position. Not a doctor just had to navigate a lot. Best of luck

Have you been checked for gluten sensitivity/Celiac Disease? I had no GI issues but after twelve years of neurological issues, including episodes of leg paralysis, I was finally diagnosed with Celiac Disease.

Celiac is an autoimmune disease which causes distraction to any organ in the body, but primarily the duodenum and the small intestine. This causes decreased nutrient absorption and inflammation in the gut. The only treatment is to maintain a gluten free diet for life, without any cross contact of gluten. There are over 200 symptoms of Celiac.

Unfortunately, by the time I was diagnosed, I had developed symptoms of leg weakness/stiffness/ exercise intolerance and severe fatigue and that caused me to be in a wheelchair outside of my home for almost two years. By the grace of God, I discovered that I was also sensitive to the amount of glutamate that I consumed. Glutamate is an amino acid found in all food but is also a neurotransmitter in the brain. When I decreased eating foods that were high in free-glutamates (anything processed, fermented veggies, yogurts, bone-broth, canned veggies, any veggies/meats that are not fresh) within two weeks I got my legs back and was not only able to walk but I was able to run!

I wonder if perhaps checking for gluten sensitivity, if you haven't already, might be a place to start? I got my legs back a year and a half ago and the doctors I have seen are still perplexed. If you decide to be checked for Celiac, be sure to continue eating gluten until your blood work is drawn and after your endoscopy (if it is found that your blood levels are high, that will be the next step to a diagnosis).

I hope that you find answers and relief from your symptoms soon!

Hi,
I get all that and have autonomic polyneruopathy, IBS, CKD, FND and T2 diabetic. I'm Autonomic end stage with weeks to live. Considered rare, untreatable and incurable, but still fighting it anyway I can. I would be asking or looking at Dysautonomia which is everything to do with the autonomic nerve and FND. Autonomic neuropathy can be caused through long covid, champylocater and many serious stomach problems. It can also be caused through natural attrition if you are unlucky enough. Many diseases are associated with autonomic nerve damage, like MS, Parkinson and more. Few medical people even consider it through ignorance and poor diagnosing skills. I'm having to educate the medical people around me every day. When the penny drops I can see the light go on in the eyes. I don't know if they bother to go and research the subject but hope they learn from my interaction with them.
Good luck.
Cheers

I'm not sure where you are located, but I would be trying to get to a top hospital that can decypher all of this. MANY of your symptoms I have also, and was diagnosed with FND but I am not a doctor and would never want to put my diagnosis on you. If your doctor won't listen. Find another doctor. I had a Neurologist that would not listen and so I requested another one. If you have to have a referral to see a specialist, then research the doctors in your area and find one you want to see then take that name to your doctor and tell him/her that you want a referral. Unfortunately today we have to be our own advocate. It takes a lot of time and energy. It's frustrating, but it's the only option as far as I am concerned. I wish you the best and hope you can find some answers.

@cmmichaela

Thank you very much!! I will bring it up to my doctor.

@lbholley

I'm really not by a "large academic hospital." I'm from Oklahoma so probably the closest thing would be like U Texas Southwetsern or MD Anderson in Houston. I got to the point when I was a kid I told my mom and dad I was done going to the doctors. I had it felt like a doctor appointment every week. I was drained. But as I've gotten older I wonder more and more what is wrong with me.

@cheyne

Thank you very much and im so sorry to hear about how much time you have left to live im sure that is so hard to fathom. That's one of the reasons I've been scared getting help for the longest time is because im scared of getting a death sentence. Sending lots of prayers (if you believe in that) and love your way.

I’m so sorry that your doctor won’t listen, that’s what I’ve had here in Las Vegas unlit recently. The problem is everything has all these symptoms, from CIDP to Kennedy’s and now Huntingtons disease I’m so sorry but keep on your doctor or like I just did, change doctors. They work for you, you pay them and I don’t mean to sound nasty but like me when I’m out of my head in pain at 3 am and I think why, all this medication and I’m on the heating pad because I want to watch some old movie? AI Chat is a great way for you to get options to talk to your doctor about. But if your doctor won’t listen, get a new one. I hope you find one to hear you and I’ll send positive energy your way while on the heating pad.