Cannot Regulate Body Temperature

Have you been tested for neuropathy by a neuromuscular neurologist?
It required biopsies in the leg plus EMG/ nerve conduction test. My body does not regulate body temperature. It can be 110 in Texas and I am freezing. I wear long sleeves and keep a sweater in my car at all times plus a blanket to cover my legs.
People stare at me because they are in shorts and tank top.

So sorry. I drove up to the Cleveland Clinic thinking I might get some help. Doctor didn’t really care at all and said I had nothing wrong. I hope you find some relief soon.

I was seen by neurology at Cleveland Clinic and was told that based on my history, neuropathy didn’t seem like an issue. They had set me up with neurology to discuss the possibility of small fiber neuropathy. I have another appt with CC on the 28th. I guess it’s going to put me back at square one but I am hoping to get scheduled there again with several specialties. I really need to find some answers. Even if it’s not treatable, I need to know what’s happening.

I’m so sorry for your experience. I completely feel what you’re saying. As I mentioned, I’m in healthcare and I am ashamed of how apathetic providers have become. It feels like if it’s not a simple diagnosis where a quick script Ican be written, most don’t want to be bothered.

Doctors can be wrong. I had neuropathy over 10 years before they did the EMG:nerve conduction test and biopsy. They diagnosed me with restless leg syndrome but my legs do not move in my sleep my husband looked at the neurologist and told him he needed to listen and go back to college. That was a misdiagnosis. In the mean time it moved into my hands tremors aka motor neuropathy now I don’t feel my hands. I cut myself chopping vegetables cut myself blood everywhere. Most of the time I don’t feel anything below my knees anymore but pins and needles start at two thirty in the morning. It then moved into my bladder well that was embarrassing the first time it happened now I pay attention set my clock every hour whether or not it happens again. Then it moved into my heart. I can’t control my heart rate it beats too fast or too slow I have either high or low blood pressure my normal 120/70. went to. 160/110 for two weeks dropped too 97//60. I kept passing out nothing can be done.
My body temperature no longer regulates itself. I get severely cold it can be 110 in Texas. I am wearing long sleeves and sweater. Some people complain of being extremely hot, did you see a neuromuscular neurologist or a regular neurologist there’s a difference.?Neuromuscular neurologist deals with neuropathy a regular neurologist doesn’t, Neurologist have their own specialties look yours up on the website see what his specialties are. I would look for a neuromuscular neurologist ask to be tested. Tell them all your symptoms pay attention to your body. Your brain regulates body temperature. That being said it would be a neurologist you would be looking for. I live in Dallas Texas. And had to go to Boston to get answers to see a research neurologist. My neurologist kept saying Parkinson’s but Parkinson’s does not run in my family. I went to Boston to discover my tremors come from my motor neuropathy my legs shake to. No brain lesions.

You have probably checked...could it be overactive thyroid?

Check not just tsh but also
T4 & T3

Agree!

Unfortunately you are describing the frustration of many chronic illness sufferers—Dr’s attention ends if you don’t immediately fit into their small area of knowledge. Keep looking until you find a dignostician curious enough to keep digging &/or someone who by chance has seen similar in a previous patient. Another commenter suggested functional medicine—a doc or medical group that will address your whole body, not individual symptoms.

Thanks for posting. I found it helpful. The only other thing that comes to mindis- you say Parkinson's doesnt run in your family. Are you certain of your DNA? Please don't take offense. I had a total DNA surprise that flipped all my medical history. Just letting you know it's more common than people realize. Healing thoughts to you!

This is from Google AI, so would need fact-checking. However, it suggests a range of possible issues. Hang in there and don't give up:

"Cleveland Clinic says that "dysautonomia is a nervous system disorder that disrupts autonomic body processes.". Additionally, a critical care medicine specialist may be involved in cases of severe heat-related illnesses like heatstroke.
Elaboration:
Internal Medicine:
Internal medicine specialists are well-equipped to investigate and manage a wide range of conditions that can affect body temperature, including endocrine disorders (like hyperthyroidism), infections, and metabolic issues.
Neurology:
Neurologists focus on disorders of the nervous system, which can also impact thermoregulation. Conditions like multiple sclerosis, spinal cord injuries, and brain lesions can cause temperature dysregulation.
Other Specialists:
Depending on the underlying cause, other specialists like endocrinologists (for thyroid problems) or infectious disease specialists (for infections) may also be involved in the diagnosis and treatment of temperature dysregulation. "