Quote:
Originally Posted by ElaineD
Hi Mat52, and Healthgirl, and JoannaP79,
You all sound like perfect examples of my Immunologist's saying, "We use the tests we have, not the tests we need."
Once we get to the advanced stages of Immune Disorders, each of us may exhibit different problems, and probably problems that have no diagnosis at this time.
I was tested for CMT last fall, which is a genetic condition causing neuropathy. I knew I didn't have it, but it was the only genetic condition I hadn't been tested for so the specialist was so hopeful.
Doctors want to find a diagnosis that we fit into. If we don't fit, it is very difficult, for all involved.
It takes a while to understand that NOT fitting into any existing diagnosis does NOT mean that we don't have serious, painful, disabling conditions. It just means that the diagnosis doesn't exist yet, nor does the test, and sadly probably not the treatment.
However, it is possible that treatments for related conditions can be helpful. Certainly anything that alleviates pain and discomfort should be used.
I am now experiencing almost constant seizures (mild mostly), and trembling, and shaking hands, which have no diagnosis at present. Earlier I had two EEGs and one overnight sleep study with an EEG, and nothing has shown up on them.
The Medication I'm taking for the seizures is Depakote, which hasn't helped at all at my current dosage of 1250 mg/day.
To top it off I have the first UTI in over 4 years, so I'm sick. "It's always something".
Do keep us posted on this forum. Isn't it wonderful that people with highly unusual conditions/problems/symptoms can meet and share here.
Hugs, ElaineD
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Hi Elaine, sorry to catch up on your news through this thread - I spread myself about on various forums and only really commit fully to one - a Lupus forum which is ironic as I've never been diagnosed with Lupus!
To clarify - I do now have a solid diagnosis of Sjogrens based on being ANA positive, having high inflammatory markers, paired oligloclonal bands and also a very positive lip biopsy. I also have longstanding Hashimoto's. But the way my Sjogrens manifests has been primarily neurological with SFN and disequilibrium. The neurologist blames most of my symptoms on Sjogrens but doesn't seem to think that the weakness is part of this. I do because I think I have an immune mediated SFN. Whereas the the dryness is life long so I don't know whether it's Sjogrens or thyroid related but for me it's just part and parcel of life and doesn't cause much hooha for me in the classic Sjogrens way. The weakness does - it scares me and I find the twitches around my body and disequillbrium hard going too. In my case I don't think I have an immune deficiency like yours because my immune system is frantically overactive most of the time, even on immunesuppressants. Also my IgG, IgA and compliments are all raised rather than low.
Yes I love this forum too and never cease to marvel at how so many of us get through the day!