Cannot Regulate Body Temperature

Posted by ladybarlow @ladybarlow, May 17 11:31pm

I am at the end of my rope. I am having issues regulating my body temperature and no one can seem to tell me what is wrong with me. I’ve seen several specialists and no one seems to he able to provide a diagnosis. Most seem pretty quick to tell me that it doesn’t seem to relate to their specialty. It feels like no one even is trying to help. This has been an issue for more than ten years, but has significantly worsened over the last 4 years or so. Every time I get at all active, my body temp starts to increase. Ambient temperature doesn’t seem to have much bearing on the body temp. I don’t have a problem with the other end of the spectrum. I don’t seem to get cold. Almost never. Even when the environment is quite cool. It’s gotten to the point where I can’t even take care of my home and self-care is difficult. I just started checking my blood pressure when this is happening and I’m learning it is increased as well. It normally runs fairly low but is getting really high when my temp gets up. I’m seriously afraid of heatstroke or a stroke just trying to clean my house or fold my laundry. I’ve have multiple appointments locally and have also been seen more than once at Cleveland Clinic. I have a teenage daughter and I’m terrified that I’m going to leave her without a mom because I can’t get any answers. Where do I go from here? How do I get someone to help me and not just push me off into another specialty because they don’t know what is causing this?

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artemis1886 | @artemis1886 | May 28 9:09am

In reply to @fearlessgrit "You have probably checked...could it be overactive thyroid? Check not just tsh but also T4 &..." + (show)

I have hypothyroidism and Hashimotos.

artemis1886 | @artemis1886 | May 28 9:12am

In reply to @fearlessgrit "You have probably checked...could it be overactive thyroid? Check not just tsh but also T4 &..." + (show)

Posted two times

artemis1886 | @artemis1886 | May 28 9:47am

I have had genetic testing, antigen testing, MRI’s no brain lesions. No antigens in my blood for Parkinson’s.
I have had three neuromuscular neurologist tell me it’s the motor neuropathy. I went to Boston to see a research neurologist. Definition of motor neuropathy it causes+movement disorders uncontrolled. I saw Dr anne Oaklander. Her mother,her and her daughter all research neurologist specializing in neuropathy.
Dr Oaklander is also a teacher at Harvard Neurology Department
My neuropathy I had to look up break it down to see what’s causing what. All of mine is autoimmune. Dr Oaklander did a biopsy to put my nerves in the world data base for researchers.
Severe axonal sensorimotor dysautonomia peripheral polyneuropathy
Small fiber neuropathy
Cardiac autonomic neuropathy
Autoimmune Disorders
Lupus
Sjogrens
Hashimotos
Connective tissue disease
The dysautonomia causes seizures and other problems.
So I looked at sensory neuropathy
Motor neuropathy
Small fiber neuropathy
Cardiac autonomic neuropathy
Dysautonomia neuropathy
Wrote it all down for myself. Where I know hats coming from where. Dr Oaklander suggested that to me so when 8 have @ new symptoms I know where it’s coming from to tell the doctors. Makes logical sense to me. As an RN I wish she would have included that in her lectures. Some yu can acces#con YouTube. I googled her after her name came up in my continuing education credits. I am retred aka disabled but license still active.

ladybarlow | @ladybarlow | Jun 6 4:03pm

In reply to @artemis1886 "Posted two times" + (show)

I may have already responded to this. This discussion is a little tricky to keep up to date in. I have hypothyroidism but it’s not very severe. Of course the hypo does not go with the being so hot. That’s more hyper. None of the docs seem to think it’s related to that.

ladybarlow | @ladybarlow | Jun 6 4:08pm

In reply to @artemis1886 "I have had genetic testing, antigen testing, MRI’s no brain lesions. No antigens in my blood..." + (show)

I too am a disabled RN. It still have an active license. I’m wondering if I might be able to work some now that there is more remote work out there.

It was suggested I might have small fiber neuropathy, but the neuro at Cleveland Clinic did not think it was likely. And if I do, I have no idea yet what caused it. Cleveland has suggested genetic testing but I haven’t done that yet. I probably will, but I will wait until I have to go there for other appts because it’s so hard on me to make that long drive and it’s costly.

I will check out her YouTube and see what info that can provide. I appreciate the feedback

ladybarlow | @ladybarlow | Jun 6 4:11pm

In reply to @artemis1886 "Have you been tested for neuropathy by a neuromuscular neurologist? It required biopsies in the leg..." + (show)

I have not yet had those tests. I suspect that will be in the next round of testing. I had an EMG years ago and do recall it was not the most fun procedure. But if I could get some answers, I’d do it again. The neurologist at Cleveland Clinic felt it was not a neurological problem so no testing was done there in that regard.
Thanks for your feedback. It all helps.

ladybarlow | @ladybarlow | Jun 6 4:14pm

In reply to @mlledaffodil "Unfortunately you are describing the frustration of many chronic illness sufferers—Dr’s attention ends if you don’t..." + (show)

I know. It saddens me that medical care has become this uncaring. I’ve had three doctors that really seemed to care about getting to the bottom of things and truly helping. One passed away and the other two have retired. So I’ve started all over and it’s not been a good experience

mlledaffodil | @mlledaffodil | Jun 6 9:55pm

In reply to @ladybarlow "I have not yet had those tests. I suspect that will be in the next round..." + (show)

Try another neurologist if you are not being heard. I realize these visits can be very deflating —you at least want a plan of action from your doc, but attention usually ends when they don’t have a fix. But you know that something is wrong, so keep going