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Old 11-19-2012, 01:17 PM   #1
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New and need support!

Hi everyone, trying to find my way around in here as its time for me to find support to help me through this, and at the same time I am hoping to be able to help others out as well. My name is Cathy and I am a 46 year old Hair Stylist (self employed) thank god, because I have been forced in the last year to cut way back on my hours due to the "Pain. I was diagnosed 3 years ago with FM, have been taking Savella. Things have escalated in the last few months my feet have gone numb and with the cold weather my pain level has hit the :-( on the pain chart. Met with a neurologist 2 weeks ago for the pain and numbness, first he took an exray of lower spine which showed only mild age related degeneration. I go for an EMG on Friday and he ordered a Repeat for ANA which was done 3 years ago and was 1:80. The new ANA results are 1:160 nucleolar so they have doubled and he is sending me back to the Rheumatologist next Monday. This time I am hoping to get some answers. Some of my symptoms are wide spread pain, with acute pain in lower back, hips, nerve pain in back of thighs, feet pain and numbness, A feeling of being stung in toes, legs and hands, morning stiffness, severe pain and stiffness after working on my feet. Trouble staying asleep, exhaustion, gastro intest troubles, splotchy like redness on arms , chest and torso (never goes away) pain in chest (bones and muscles) weakness etc, In the past I have had pleuorosy , TMJ, migraines, and ackiness all over for a long time. Sorry if this is too long, but if you have any ideas, Id love to know what you think, My PC has been saying for years now that he thinks I Have Autoimmune disease, but havent been able to get a diagnoses. Thanks

 
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Old 11-20-2012, 08:02 AM   #2
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Re: New and need support!

Hi & welcome. BTW, no, your post isn't too long! It's more or less the post I'd have written had I found this site during my nasty years, and a lot like others here post, too. Here are a few thoughts, but please read in the light of my being just a (dumb) patient, OK?

My understanding of ANA is that it's only a "threshold" test, so in & of itself, it can't diagnose anything; this is because it may be positive in a number of conditions within rheumatology AND other "ologies". Additionally, it can vary from test to test as certain symptoms flare then recede. As for pattern, a lab tech uses best judgment to assign it, so pattern is probably rather "fuzzy".

Symptoms and additional lab tests flesh your picture out further. When ANA is positive, more SPECIFIC autoantibody tests are run to try to trap certain specific autoantibodies. Even those don't always define a single condition: some do, but others don't because they overlap multiple conditions.

Also, autoimmunes have predetermined standard diagnostic criteria that drs. use. For the rheumatological conditions, these are developed by the American College of Rheumatology. Weirdly, the criteria don't always include the most "common" symptoms---but instead things that best differentiate one AI from its "close cousins". You could see one example in the "sticky post" (permanent info post) section of the lupus board. I think all such criteria are intended to be guidelines, though, not applied as hard & fast rules.

Sometimes there are other diagnostic "paths" that help confirm or rule out a given condition. Example: biopsy of a skin rash, done by a dermatologist.

I kept above general but hope you just give a YELL if there's anything you want to focus on. Also, that you drop a post to let us know how you make out. I've met wonderful and helpful people here & bet you will, too. Wishing you better days ahead, and soon. Sincerely, Vee

 
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Old 11-20-2012, 08:50 AM   #3
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Re: New and need support!

Thanks Vee, I guess its down to waiting for appointments and test results. Right now I am mainly concerned with the pain. The Fibro Meds don't seem to be working at all. I need to find some kind of relief , and I am determined to get answers this time around, I am just not convinced that Fibro is the only thing happening here. I am going now to the Lupus board to read up on the criteria for that, thanks for the info.

 
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Old 11-20-2012, 09:18 AM   #4
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Re: New and need support!

Hi. I only used lupus as an example b/c I'm familiar with that board. But it's a good example of an AI with many "faces" and many twists & turns. The auto-antibody labs in its diagnostic criteria---ANA, anti-ds-DNA, anti-Sm, and antiphospholipid---are only *some* of the lab findings possible, yet are the ones that "make" the criteria list.

My positives were anti-Ro and anti-La, seen in lupus, Sjogren's Syndrome, and maybe one of the serum complement deficiences as well (not sure).

My chronic rash (upper arms & back) was neither discoid nor malar (the two rashes that make the criteria list). Instead, it was a different lupus-specific rash, a less common one that doesn't appear in the criteria.

I had 20+ years of GI misery; invasive tests ruled out inflammatory bowel disease, so that left IBS, yet IBS meds didn't help. Fatigue. Migraines. Urinary problems without UTI's being present. Migraines. Anemia. Joint pain and pain alone long bones (shins esp. bad). Erratic periods. Hair & weight loss. Low-grade fevers. Neuro-like tingling. I was dx'ed with lupus some years ago. But the good news is, medication, sun avoidance, and regular checkups have made a HUGE difference, so here's hoping you'll get on that better path soon as well, whatever your path turns out to be. I hope you stay in touch. Bye for now, Vee

 
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Old 11-27-2012, 05:14 AM   #5
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rcateyes34 HB User
Re: New and need support!

Well I saw the Neurologist on Friday, the emg was negative, (no nerve damage in feet). They found through the exray that I do have arthritis in my lower back. Today I see the Rheumy, I think I have everything written down. I am going to focus on new symptoms, since I saw him 3 years ago "most are within the last few months" of Increase level 7/8 pain in lower back, hips and legs, numbness in feet seems to be receding except for the original toe which is still swollen and painful, and bending. Rash on chest and arms, worsens after bath or shower, or when I am out in the sun, or get a hot flash, but doesn't itch or burn. Ongoing rash (extremely itchy and painful) on soft tissue in Peri area, dermatologist thinks its a type of Lichens, doesn't go away with treatment, weight loss 30 lbs since March with no dieting. Low tolerance for hot weather or cold weather. R hip goes out on me, like a ligament moves and causes extreme pain. Need something for pain relief , get off Savella (not working) possible disability ( I am finding it harder and harder working on my feet (hairdresser) takes all my energy for my job, takes 3 days (off) to recover. Forced to cut back my hours to 15-17 a week. Hoping i can fit this all in in less than 30 minutes LOL........Hopefully when I leave there today, we will have a new game plan!

 
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Old 11-27-2012, 06:38 AM   #6
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Re: New and need support!

That's good news from your neurologist.

If you want, you could post more re: what your skin blotches look like (how big? what shape? flat or raised?), to maybe trigger more input from others. Dermatologists (or dermatopathologists) can deep-punch biopsy, examine under microscope, also perform immune stain tests on most lupus rashes. (Think one exception, where the stain tests don't work, is Tumid LE = TLE, but am not positive.) Mine were SCLE rashes; the stain tests were very useful, proving the rash was lupus-specific.

Good luck at your rheumatologist today! Bye, Vee

 
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Old 11-27-2012, 09:10 AM   #7
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Re: New and need support!

thanks Vee , I'll try a new post re: the rash

 
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