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Hello all who replied!

Wow, I had no idea what response my post would generate. I am grateful for this. Where I was feeling very confused, I at least have SOME clue what to do next!

My rheumy is the ONLY one in Southwestern Ontario who could take me. We have one here in a nearby city who USED to have a 2 year waiting list to get in. Now he does not take new patients at all! I went all the way to London from Amherstburg. That was quite a trip, considering I don't drive due to ocular migraines. I have constant visual disturbances & they get worse prior to a whopping 3-4 day migraine.

Forgot to mention, I also have this strange symptom - my Dr calls it Lhermitte's Sign. I think out of any of my symptoms, I find this one the most disturbing. I will get what I describe as a ZAP that jolts up the back of my neck & across the top of my head, sometimes goes up the back of my neck & runs up behind my right ear. It's like being electrocuted, no warning at all. It's usually apparent to anyone I am with, that something has just happened. They can see me jolt from it. It is worse if I have to stand in a long lineup. Curious symptom, but I have heard that it can be associated with MS. Been told I do not have that either. Anyone else familiar with this one?

I am being treated with thyroid medication, which I am responding favourably to. Not that I FEEL much better, just that my numbers are very good now - all in the normal ranges now.

I am also on Amitriptiline, that I take at night. I am told I likely have sleep disorder, as most with Fibro do. I have a sleep study scheduled for August 4th, so it might shed more light on that. Have always been an extremely light sleeper. Never wake up refreshed.

My 'weak' ANA has the dr's CONVINCED I do not have Lupus. He says I do not present the clinical features of Lupus. It is the Anti-DS-DNA test that he said was high. Actually my test results are:

Nov. '05 are ANA+ at 1:80 & speckled pattern - No anti-DS-DNA was done then

Feb. '06 ANA neg & anti-DS-DNA 311 (highly positive)

Repeated by rheumy May '06 ANA 'weak' positive (no numbers given for ANA) Anti-DS-DNA was 143 - His comment here was "Usually patients with such Anti-Ds-DNA levels should have more than a weakly positive ANA."

These are the only 2 tests that have been ordered. It appears that there are some more tests that I should have done??

They are just going to keep checking my blood, I guess until I get REALLY sick. Well I am sick of being sick. Why do I have to get sicker :confused: ???

Today was, I think the hottest day of summer here. The extreme temps make me ill as well, I get tired, and alot more aches than usual - being chilled or overheated causes flareups of my fibro. I am sitting in a room with my A/C on, wearing furry bedroom slippers & a sweatshirt. My daughter gets TOO hot, so I have to accomodate her. That is fine so long as I take care & cover up.

My nerve conduction test was done today & guess what they found? NOTHING! I cannot turn my head, EITHER way, or up or down, without a pulling sensation, can put my neck & back out by sneezing, or startling, be it awake if someone scares me, or the startle reflex when I fall asleep too rapidly. My lower back throbs at times & I have days when I feel like if I bend over, I might not be able to stand up again. The needles they used, although they were very fine, they really HURT, and my arm, shoulder & neck are all aching worse than before. The flesh where the needles were inserted feels tender & bruised.

VeeJ, I will have a look at the sticky post you mentioned, I need to learn all I can about this, perhaps print it out & take to my Dr so he can read also. I have a GREAT family Dr, who thinks OUTSIDE the box & is very aggressive about getting me tested, so I am not afraid to present 'my findings' from you all to him.

I am only 42. I am sick & tired of being sick & tired :dizzy: ! BTW, both my parents have some form of arthritis. My Dad has infectious arthritis, and my mom has RA. My RA levels were fine, even though my fingers are becoming mis-shapen & pointing outwards, just like my moms.

Anyways, thanks for the input, really it is so appreciated! Will post more as I find out more


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