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Hi all;

Going through hell trying to get a diagnosis, as I am sure most of you have as well!

Quick synopsis of what I have been going through:

Muscle wasting of left leg & left foot is cold all the time & has barely detectable pulse. Seemingly pinched nerves in my neck for the last 14 yrs. Can put my neck & back out just turning over in bed or sneezing.

Carpal Tunnel ?? Nerve conduction tests in arm & neck scheduled for tomorrow.

Hypothyroidism & Fibromyalgia - just recently diagnosed.

Persistant migraines, brain fog, react badly to fluorescent lighting, chemicals & preservatives

IBS??

Pretty sure that's it. The concern now is that I have now had 2/3 weak positive ANA WITH speckled pattern, and now had TWO out of TWO high Anti-DNA tests with the weak ANA. They are going to 'keep an eye' on my bloodwork for awhile & see what comes of it. My rheumy is pretty concerned, yet very baffled by this. So I guess I am a puzzle??

He says I do NOT have lupus, OR MS. Ok then, so WHAT do I have :confused: ?? I feel like I am dying most days - physically I am drained & some days it is an effort to do simple tasks like wash my hair, or blowdry it etc...

Anyone else expecience these same kinds of lab results? I really feel lost here, like there is something more I should know, or something more the Dr's should know!

Any input appreciated!

Dee
Deana, I know the feeling! It is very difficult sometimes to get the conclusive diagnosis....not that we want it.....we just want to know what is wrong. My rhuemy says I have CTD (connective tissue disease) he says I am almost at lupus but have not crossed the line yet and anything on my side of the line is called CTD.

I had a slightly positive ANA in Mar03 and in June 03 it went to highly positive ANA. I also have antiphopholipid antibodies and my speckled pattern ANA results show a DNA with high titers for lupus. Two years later I had a negative ANA and all blood tests were fine. I am low in Vitamin D which research is beginning to study about CTD patients and low VitD.

I also am hypothyroid and have fibromyalgia. One doc I visited said my positive ANA could have been from the hypothyroid. It is all a guessing game if you ask me. I just try to discuss all that I need with my rhuemy to be sure I stay out of pain and can keep going. It is all a wait and see game if you ask me. Good Luck let us know how you are doing.

Glojer
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

Dee
Hi gals,

I also had the shocking feeling but it wasn't in my neck. It was coming from 3 herniated discs in my lower spine. It would shoot straight up my spine to the base of my neck as if it had a specific path to run. I did not have them for a while and then they came back. My Dr. and chiropractor scolded me for not doing my stretching and pulling exercises. They tell me because of degeneration along my spine I must keep the things that are whole in shape to take the load off the ones that are damaged. I have come to where I can feel even the slightest shift in my spine, be it low or high. I don't wait anymore. I try to get in right away and have it taken care of.

As to the tests that should be ordered, there are many but I would ask for a full autoimmune panel and then redo any that are borderline or low pos. every three to six months. I think I said before, mine are not always pos. and when they have been it has been a low positive. The Dermi is really the Dr. who finally diagnosed me although my PCP was certain before I had the punch biopsies done.

I hope you feel better soon Deanne. Aquanegra, nice to talk to you again.
May God Bless Us All
Patience 50
I read often and very rarely post, but had to put my 2 cents in on this one. I was diagnosed with lupus with ANA 1:80 and a high Anti dsdna. Not, however by my first rheumy. My 2nd rheumy I like very much and is extremely knowledgeable about lupus. I knew I had lupus after studying all the test results and he confirmed it the first visit. I also had the SM antibodies, which is another test that points to lupus. I also had a positive test for sclerderma, after the examination, he said these test results cant be right and did the test again. This time the sclerderma test came back negative, thank goodness.

I agree you need to ask for a full lupus panel to be done. Also be sure to get copies of all you lab test. I am on plaquenil and 5 ml prednisone and my lupus is stable with very little pain and much improved fatigue. Hope you get answers and proper treatment soon. It will make all the difference in the world.

Best wishes
Coco
Hi Coco;

My ANA numbers are the same as yours (as well as having the high Anti-ds-dna)... I find it curious that more is not being done.

I need to get off my duff & get more bloodwork done. I have just been denied ODSP benefits. I expected that to happen though & am working on my appeal. I had not yet been dx'd with anything when I was first made to file. Since I have filed, I have the dx for Fibromyalgia. I understand that having 11 of the 18 pressure points automatically qualifies one for disability pension. I scored 15 out of 18. I am pretty sure there is more going on than just the Fibromyalgia, since they say that cannot be detected by bloodwork. If my bloodwork is no indication of the Fibromyalgia, then there has to be something else causing me to be so sick on top of that, hence the ANA of 1:80 (they say that is a weak positive??) and the high anti-ds-dna as well.

Really glad I came back to this site. I now have a list of tests to encourage my dr to get some labs done on.

Thanks for your input!

Dee





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