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Dysautonomia? Desperate To Find An Answer...


jread

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My sis, a friend and I had very similiar situation as children. We missed months of school and were in the hospital. We continually ran a fever and had swollen lymph glands and were real lathargic. They never figured it out. One theory was that we had antibiotic fever. Another was a mild case of polio another was diptheria (they suspected these from immunizations we'd had from the same doctor.) They thought possibly mono - but we didn't test positive. We all to this day have autonomic dysfunction. I have POTS, my sis has orthostatic intolerance and our friend has dysfunction and CFS but isn't diagnosised as of yet with autonomic things - but he has all the signs. None of us has been robost or healthy since this illness and we all had it at the same time. Has she had any immunizations recently? I too have auto immune issues with low IGG. Also, figured out that glutton, dairy and sugar have a big impact on my symptoms. I have the flushing and fast heat ups. I tend to run low body temp, now. But we all ran a fever for a long, long time. They took us off the antibiotics - I remember. Is she on antibiotics or been on them for awhile? So sorry, that you both are going through such hard times. It is commendable that you are there for her and being her advocate. BRAVO - to you! Hoping for some answers. Please keep us posted - since some of us seem to have had similiar things.

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She sounds like an atypical dysautonomia case to me. If you look at your situation, she was in atypical circumstances (cancer, pregnancy, post partum, chemo) & no other causes were found after exhaustive testing. I certainly agree with everyone else here and think you should seek a doctor well versed in autonomic dysfunction & have more testing done but I'm willing to bet she has Dys which could have caused all of these crazy symptoms...or at least be a part of them.

It's ironic that you are in Computer Science as my husband is a Computer Scientist also! I completely understand your need for an answer and you have every right to get one. So keep trying until you find a compassionate doctor that gets her functional again...it IS possible. Besides, even if it weren't, you have a whole messageboard praying for you now! :D

You are doing the right thing by seeking out more help. If it's any concilation, most of us will develop a new, odd, or different symptom and run to this board to see if others have had it. But we are all so different too so keep that in mind.

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  • 2 weeks later...

So, this morning she woke up with a fever of 104.4, which was pretty scary to say the least. She hasn't been above (or even near) 104 since around December, so it was quite defeating to see her body temperature get so out of control after months of remaining low-grade at worst. I immediately got the sheets/blankets off of her and turned on the fan. I felt around her body to check if she was sweating and there was not a DROP of sweat anywhere on her. Her skin was red and flushed on her face, head, neck, chest and arms, and was burning hot to the touch. Even the whites of her eyes were very red. I got a wet rag and started wiping her down, letting the water evaporate under the fan and trying to simulate the way sweating would work. Within 10-minutes she was down to 103.5 and another 20-minutes she was down to 103. At this point she was tired of having a wet rag on her so she decided to get up and try to drink some water, etc. Her temperature continued to fluctuate throughout the day but generally stayed between 101.8-102.3. Right now it is around 101.4 in our dark, cool living room.

We have an appointment with a neurologist next Tuesday and hopefully we can start working on figuring this out. I honestly do think that she is completely unable to sweat or cool herself down, which results in this hyperthermia-like state she can get into. It also seems to be greatly affected by times when she is anxious, excited or stressed, further pointing to something nervous-system related. I will let you guys know what we find out (if anything).

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So, this morning she woke up with a fever of 104.4, which was pretty scary to say the least. She hasn't been above (or even near) 104 since around December, so it was quite defeating to see her body temperature get so out of control after months of remaining low-grade at worst. I immediately got the sheets/blankets off of her and turned on the fan. I felt around her body to check if she was sweating and there was not a DROP of sweat anywhere on her. Her skin was red and flushed on her face, head, neck, chest and arms, and was burning hot to the touch. Even the whites of her eyes were very red. I got a wet rag and started wiping her down, letting the water evaporate under the fan and trying to simulate the way sweating would work. Within 10-minutes she was down to 103.5 and another 20-minutes she was down to 103. At this point she was tired of having a wet rag on her so she decided to get up and try to drink some water, etc. Her temperature continued to fluctuate throughout the day but generally stayed between 101.8-102.3. Right now it is around 101.4 in our dark, cool living room.

We have an appointment with a neurologist next Tuesday and hopefully we can start working on figuring this out. I honestly do think that she is completely unable to sweat or cool herself down, which results in this hyperthermia-like state she can get into. It also seems to be greatly affected by times when she is anxious, excited or stressed, further pointing to something nervous-system related. I will let you guys know what we find out (if anything).

Yes...you were sweating for her (good job)! I so hope you find answers. You both will be in my prayers and please keep us updated.

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Jread-

BUMMER that your wife had another big flare of temperature issues. I was really hoping that getting her port out might have helped with that.

Sure hope the neuro you're going to has some experience with autonomic issues. Not all of them do. I tried to see one locally and was treated like dirt. ("This is a cardiovascular issue..Why are you here?" Well,uh I kind of thought issues with the autonomic NERVOUS system might be followed by a NEUROLOGIST, you idiot! <_< )

Anyway, it certainly doesn't help your condition to be so casually dismissed so I hope for both of your sakes that you have someone who has some experience with it. Otherwise you might as well save your money and find someone who does.

Good luck to you both. Your family is in our prayers.

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Lovebug,

I too have chronic constant disabling severe abdominal pain.

Well, I must say that I've had some significant improvement over the past 6 months. I attribute it to hydration, my beta-blocker, & mainly my SSRI (Celexa). I take the tiniest dose of Celexa but it works. If I start having trouble, I increase the dose ever so slightly. I've only had to increase the dose once.

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Hi Chaos......isn't that the truth regarding neurologists!?! Before I was diagnosed I was sent to a neurologist who ordered a Brain MRI. When I went back for my F/U and the MRI was normal, I asked him about Myalgic Encephalopathy (ME) and he didn't even know what it was! :blink: Ummm, who treats it if not a neurologist!?! lol!

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