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

Hi sasquatch1031, I'm a 32 year old female and reading this like was reading my own story. I have come a long way and have gone down endless rabbit holes and would love to share my experience with you and give you some insight. Are you able to message me directly and perhaps we can schedule a call?

Overall highlights for others interested: look into CIRS (Chronic Inflammatory Response Syndrome) people with certain HLA-DR and MTHFR markers (you can look those both up as well) can get this from exposure to mold and/or a biotoxin illness such as lyme disease. I was first diagnosed with small fiber nuerapathy as well and then started seeing a functional doctor who are interested in the ROOT cause and not just prescribing medications like so many western doctors do these days.

I hope this helps and I'm here if you want to chat futher.

Brittany

Tony24. Hi, I am new to the disease and to this connection, thanks for the welcome. I am inspired and encouraged by this message as I research and mentally prepare for the progression of this burning pain.
You put forward a great mindset for me, thank you

Try the medicine. What have you got to lose? Good luck

Hi @raehoffman, Welcome to Connect. You are not alone in your journey. Many of us have had to learn about the disease since there are a lot of different treatments that can provide relief for the symptoms but no real cure. For doing your own research I would recommend checking these two sites. They have helped me a lot.

--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/.

You might also want to read what others have shared in other discussions here:
--- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
--- Burning feet and legs: https://connect.mayoclinic.org/discussion/burning-feet-and-legs/.

Do you mind sharing a little more about your diagnosis and how long you've had the symptoms?

Hi Rae, I'm happy that my message helped you in any way. And I hope the best for you with your health and life.

i have multiple sclerosis, and yrs ago had a bad reaction to the antibiotic ciproflaxin IV, which an ED doctor gave me for double pnemonia. Soon after being transferred to the Medical floor I started hearing voices. (turned out soldiers who were given cipro in case of anthrax in the Iraq war started hearing voices too). Anyway I was sent to see one shrink after another, was told I had depression (which apparently can cause that too). Etc., etc. My neurologist, Dr Herman Weinreb, R.I.P., said the voices were a reaction to the ciproflaxin. And I believe him. They have never left, I have learned to live with them. So I understand your skepticism, not wanting to take drugs given by psychiatrists to explain away physical symptoms.

Have you seen a neurologist? An MRI scan of your brain and spine might help with a diagnosis. Problem there is getting a neurologist to think it's warranted. You need to have a certain set of symptoms, the tremors qualify -- when you put your arms straight in front of you, do they shake? Do your hands shake? When you sit down and raise your legs, one at a time, what happens? Is there a tremor, is one leg harder to raise than the other? Do you have any problems urinating? Too much, uncontrollable? Or difficulty getting going? Any bowel movement problems? Constipation or inability to control bowels? When you sit and lower your head do you feel a tingling or weird sensation going down your spine? That is called Lhermitte's sign. Do you have numbness, tingling sensations anywhere? How is your vision? Have you ever experienced a blind spot (mine lasted less than a second, it was like a black moth spread its wings over my eyes -- that was the stupid way i described it to the first neurologist i saw, who didn't understand its relevance to my symptoms, total numbness of the right leg & tingling of the left foot).

The thing about doctors... I loved my neurologists, one has died, one is dying, and they were among the kindest people I've ever known -- but medicine has become so specialized, you need to find a neurologist who specializes in your disease before you can get the proper help. It took me 7 years to get diagnosed.

See if you can get a referral to a neurologist who's also a psychiatrist. That might get you away from shrinks who think your complaints mean you're crazy and maybe will get the proper neurological tests ordered.

Hope everything will work out for you. Best of luck.

Please send me the mind set. I’m spiraling down fast. So much pain.

Sasquatch 1031, you didn’t say if your neurologist had ordered an MRI yet. I too was spiraling downhill fast with worsening symptoms everyday - losing body functions and experiencing burning neuropathy and tremors in my hand and arm, when my PCP tried to tell me it was all in my head. I skipped the psych eval and headed straight for a neurologist. A week later, following an MRI which confirmed my problem, I was immediately admitted to the hospital for cervical spine surgery for decompression and fusion. Unfortunately I wasn’t in time to avoid the injury that had already occurred to my spinal cord, so I now live with an incomplete SCI and all the daily pain that goes with it. I would ask about an MRI if you haven’t already.

When doctors can’t come up with a diagnosis, they turn to neuropathy. They may be correct. Hang in there.

dave130
Your story sounds identical to mine . I am 16 days post- op .
I was told for 8 years I had neuropathy . I am afraid that going undiagnosed for so long that a lot of the damage may be permanent also .
How long ago was your surgery ?
Did you have any improvement after the surgery ?