Quote:
Originally Posted by en bloc
Not sure how I missed commenting to this thread.
I sort of (to some degree) agree with the neuros about not doing the DRG testing with the lack of exam abnormalities or even any symptoms listed indicating sensory or motor issues. It's not like it's invasive or anything, but you seem to have had a fairly extensive work up. You certainly don't have to have positive EMG's to have a necessity for DRG investigation, but without symptoms or anything found on exam, I don't see how they would justify it to insurance. I do also believe you would experience some sort of pain, numbness, or other sensory/motor issues if the DRG was a big problem and cause of your problems.
I do see you have some indication of autonomic dysfunction, but there is many possible causes of this, which has already been mentioned (diabetes, even pre-diabetes, gluten, etc.) Of course there is an autonomic ganglia that could be effected, but again I think you'd see other confirmation of autonomic dysfunction before they'd go on that hunt.
The Lyme can certainly present this way. Have you had tick exposure...do you live in an area were it's likely? Did you ever see the typical bulls-eye rash?
My understanding of Lyme is that treatment can take a long time and you may not notice improvement for a while...and it sounds like you just began this treatment. I'm not familiar with Lyme enough to know whether it effects the DRG, but I'd guess it's possible. Glenn probably knows more about that.
What about any autoimmune testing? Do you have any other symptoms you haven't mentioned...rashes, joint pain, etc?
I just noticed your PM. Hope this answers your questions.
|
Hi, thanks for the response. Regarding pain or numbness, I do have sensations sometimes, not really painful though, its like a feeling of adrenaline or tightness in my glutes, thighs and calfs, weirdly enough it seems to be its worst 1st thing in the morning laying in bed, and appears the most almost like a cycle around the 6th-20th of each month (I know this sounds very strange).
Numbness, i just get little sensations very sporadic (like maybe my right little toe will feel a little tingley when I run up the stairs with no shoes, then when I touch it with my hand it goes away, or sometimes I get a little tingle in the center of my back, again when I touch it it goes away) these are very sporadic, maybe 5 or 6 days out of the month. Absolutley no motor issues.
Regarding the autonomic dysfunction, this seems to be my big issue. just had my 3rd autonomic testing done at Mass General yesterday, same results as the previous two, all testing (cardiovagal; sudomotor; adrenergic) was normal except for tachycardia on tilt test (indicating POTS w/o other autonomic involvement)...
Regarding lyme, I live in probably the most tick infested part of the country, where lyme is ramapnt, I have had tick exposure in the past (I hike, bike, etc. and have pulled ticks off me prior). However, I never did see any bulls eye rash, nor do I have any headaches/joint involvement...but when this all started I did get a weird rash that came and went and no docs go identify, as the months have gone on, it has appeared with much less frequency, last time about 2 months ago (I can post a pic?)
I have seen two prominent LLMD's here in Mass and both think I have lyme, I am very skeptical though, as I am missing some of the major lyme symptoms and pretty much everything I experience can be explained from the SFN/POTs (I think....)
I have had many lyme tests throughout, which have all been very borderline with some lyme specific bands showing, I will post those in a sec. Been on Doxy for about a month now, w/o any improvement or herx that I have noticed...
Regarding autoimmune, I have seen a number of Rhuem's, had ESR, CRP, ANA, ANCA, RF, anti-ro/la, anti-jo, IBD serology, all tested mutliple times and not the least bit postive for any inflamation or signs of autoimmune... I am not sure what other tests might be relevant but I am open to seeing another Rhuem.
Have had immunoglobulins tested twice:
4/13/12: IGG 1110; IGA 298; IGM 61
8/27/12: IGG 1010; IGA 282; IGM 52
They have all lowered a bit, but immunologist (specializes in mast cell disorders) says these are very good numbers and completely normal for them to fluctuate...
Can't really think of any other symptoms... I think I mentioned, Ifelt very ill with GI stuff back in Feb., lost about 20 lbs. in a month or so which is a lot for me, havent lost anymore since then but also havent gained any back no matter what I eat.. ngs seem to wax and wane but I never feel anywhere near normal.