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Old 11-23-2003, 09:24 AM   #1
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Angelic... went to the rheumy

Angelic,

My preliminary diagnosis from rheumy are Raynaud's Syndrome, Myositis and Fibromyalgia. He sent me for more blood tests and a urinalysis which I have not got results on yet...because the stupid lab sent the results to my gyno's office instead of the rheumy and she just forwarded it to him. Anyway he told me I am just going to have to "learn to live with it" that there is "no medication or supplements" that you can take to help fibro or the other stuff. He told me to "always keep your hands and feet warm", "exercise but learn how much you can handle without over doing it". I am not suppose to go back to him unless I get really worse or unless his office calls if something shows up on the further testing they did. Yes he told me this! What do you think? I would be glad if I don't need to go back... as I sure don't want to have autoimmune diseases nor did I like the $315 bill from him, especially since his office said it would be $200 when I made the appt.

 
Old 11-23-2003, 11:46 AM   #2
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Re: Angelic... went to the rheumy

Hi Angela,

Welcome to your first Rheumatologist appt. I am glad that he recognized the Raynaud's Phenomenon (it was blindingly obvious, even to me!), but what the heck! I really doubt that you have Fibromyalgia- as I said to someone else in this forum- they often diagnose Lupus as Fibromyalgia because it is a "cop out diagnosis" meaning that if they dont know what is going on they diagnose you as Fibro. The Mytosis is probably a valid one- but I think it is only HALF the diagnosis with you. I think that him saying that the mytosis was seperate from the fibro isn't right? He should have just said Myositis. It would explain the fibro symptoms if you have them!

I remember that your ANA is positive. And that the pattern is centromere right? Raynauds can be a big part of that, I really want to see your latest blood work because something isnt right here. Is he going to treat you? Sheesh he sounds like a bone head! I mean- some of them want to see blood work that is SKY HIGH in order to treat. I am sorry that he was such a dork. I hope that your blood work comes back more conclusive so that he can look after you- or I would even go back to your GP and see if they can! Take care and BIG HUGS. It took me 6 Rheumatologists to get diagnosed, pretty crappy hey? I heard everything from "You dont look sick enough to have Lupus" to "You need orthopedic foot supports for your swollen feet". Some are just silly, please try not to be discouraged. Keep warm and I cant wait to see this blood work

~Angelic

 
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Old 11-23-2003, 03:01 PM   #3
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Re: Angelic... went to the rheumy

Angelic,

Believe it or not, he said I had only mild Raynaud's as he said he could barely see any constriction of vessels in my fingernail. Mind you he didn't use a microscope to look at it (isn't he suppose to?). Instead he using a magnifying glass thingie. I thought he should have looked at my toenails as my feet were feeling like blocks of ice with intermittant burning and stabbing sensations. I think it is twice as bad in feet as in hands. His office was so cold. I was freezing.

He told me to read a particular book on Fibro which I lost the title off, but will ask his nurse when she calls to give test results. I will let you know when I get my latest results. BTW-how high is sky high for ANA to get a dr's attention? I thought the 640 on last test was suppose to be really HIGH? Get this he says I don't have Lupus because I didn't have tenderness when he poked on each of my joints. I don't have joint pain, except in my toes, but do have muscle and deep bone pain. The Myositis diagnosis apparently came from my telling him that ever since I broke my leg 18 months ago it still swells up on the part I struck on the rock. Whenever I go hiking a big knot comes up on the area and in general it has been puffy and swollen for 18 months straight. The bone has been x-rayed twice and showed the fracture itself healed to where it is barely detectable, bones perfectly aligned. At least he is acknowledging that I do indeed getting swelling, as other drs I had mentioned that to didn't seem to believe me.


Going to my GP doesn't seem to be an option. One of my GP's insists that everybody has ANA and she doesn't think I have any autoimmune disease despite what rhemuy says. The other GP I have seen says she absolutley cannot treat me for the autoimmune problem, nor the adrenal problem nor migraines that I have. Apparently she only treats the sniffles. There are no other GPs on my insurance.

 
Old 11-24-2003, 01:41 PM   #4
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Re: Angelic... went to the rheumy

Yikes Angela,

I really don't think that this is Fibromyalgia!! And some doctors don't notice a positive ANA titer no matter how high it is. It is so sad, because so many people have a negative ANA and have a hard enough problem getting diagnosed that when people do have it positive and CANT get diagnosed it must be really irritating. Sheesh. I think you need a new GP! Could you find a new one and start over? Your GP should be your sounding board. I dont know what I would do without mine.. she is a God send. Please let me know what the blood work showed. He obviously wasnt looking too hard at your Raynauds either! What a bone head he was. On to the next one! You do have a right to a second opinion. Perhaps you could go to a big center (like a university hospital) to see a Rheumatologist?

~Angelic

 
Old 11-24-2003, 05:13 PM   #5
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Re: Angelic... went to the rheumy

Angelic,

I called the records person at rheumy to have my tests mailed to me, but she didn't call back to acknowledge that my request was being processed. I have a feeling I will have to put up a fight to get my tests which is the case with nearly every dr I have been to even though it is illegal to refuse a patient his/her medical records.

I saw where someone had posted that they were taking MSM for their Lupus. I researched on it and gets good reviews it seems. So I picked up a bottle tonight. Have you tried it? I forgot to tell you that I totally blew him away by asking him if he thought the ANA could be from my hypothyroid or adrenal problem. He seemed to be in shock that I had the knowledge to ask such a question. I don't think he really knew the answer, so he kinda grunted "uh-huh". Such expert advice I got there for $315.

Unfortunately he is only rheumy in these parts. There is no such thing as a university hospital anywhere close to me. Also there is no other GP's to see that are on my insurance. Get this only 3 GPs are on our plan that treat adults, the rest are pediatricians. Just about everyone in town with any sort of significant illness runs into same problem, there is little selection of drs because they refuse to work in an area where they will make so little money compared to the big city. Considering what I have read from others, most people with autoimmmunity are pretty much on their own anyway. I don't know why even bother having drs then.

 
Old 11-24-2003, 09:37 PM   #6
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Re: Angelic... went to the rheumy

Hey Angela,

YES you do have a right to your file. That is your right as a patient! From what you have said, I guess sometimes Canadian health care isn't so bad. I dont like how our health care system works most of the time.. but we have the right to see whatever crappy doctor we want. LOL That's awful for me to say, but where I am from there are NO Rheumatologist's that are good.. and I am not exaggerating. Remember that I had to travel to London England in order to see the best one to figure me out. Sometimes we have to go the distance to get the health care that we deserve, but by the sounds of where you are.. its hard to do that!! Keep your chin up- it will get better. You can always have a heart to heart with your GP I suppose, and tell him/her how desperate you are to get help Take care girl!!

~Angelic

 
Old 12-03-2003, 06:59 PM   #7
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Re: Angelic... went to the rheumy

Angelic,

Here's my test results if you wouldn't mind having a look at them. The dr said the results were "unremarkable" and had no reason to continue to see me until I get worse.

Here's the test followed by the result. For all these tests the reference interval is the same Positive is greater than 120 or Equivocal 100-120. Does Equivocal mean borderline??

Sjogren's Anti-SS-A 58
Sjogren's Anti-SS-B 12
Antiextractable Nuclear AG RNP Antibodies 42
Smith Antibodies 21

Antiscleroderma-70 Antibodies 19
Anti-dsDNA Antibodies 38

SED Rate-Westergren 0
Antismooth Muscle Ab, Quant negative

C-Reactive Protein, Quant 101 reference 0.0-4.9

Urobilinogen, Semi-Qn 1.0 reference 0.0 1.9


Any ideas on this?

 
Old 12-04-2003, 09:58 AM   #8
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Re: Angelic... went to the rheumy

Hey ya Angela!

I will get some info on these and get back to you. Just wanted to let you know that I read it and I am working on it for ya Talk to you soon!

~Angelic

 
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