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Old 07-27-2012, 07:56 PM   #1
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Advice on Autoimmune Disorders

I am at my wits end. I was referred to a rheumatologist b/c my family dr did a fatigue panel on me because I had ridiculous fatigue, had to take naps at work, thought about calling out just because I am tired (and that is not me) etc. Only thing that came back was a kindof low b12 level, 360, that I had a past mono infection, and an ANA titer test that came back 1:80 which isn't much of anything but he did refer me to the rheumy for a consult about possible RA. I met with the rheumy and based on the symptoms I told him, fatigue, hair loss, leg cramps at night, interstitial cystis, flu-like feeling 2 or 3x a month, swollen lymph nodes in neck and throat more often than I can count he is thinking Lupus or Fibromyalgia. I meet back with him in 2 months and inbeween then I am supposed to get a battery of bloodwork done, testing CRP, ESR, Lupus test, ANA again...My CRP, ESR and the like came back normal the first time when my family dr ran these tests. I don't get why he is running them again? Anyways, my question is...Is there any other autoimmune disorder besides lupus that would cause these symptoms...The IC I have is a big concern in my life. I actually had to leave work this week because I couldnt take it anymore. I also felt nauseated, had sweats but then had goosebumps, probably a mild fever at some point...Next day after this I woke up with swollen lymphnodes and flu-like feeling. Almost had to go home again because of this. Also broke out with a cold sore on top of that. I went home and took nyquil, woke up the next day completely cured except for the cold sore of course.. Wondering if the benadryl in the nyquil means anything? Am I having an allergic response to something in my body? The next time I feel ill or have an IC bout I am going to take benadryl and see if it cures everything again. BTW, I am 28 years old. Anyways, thanks for your suggestions...

 
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Old 07-28-2012, 06:29 PM   #2
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Re: Advice on Autoimmune Disorders

Hi rockcandy, I hate to say this to you to cause you more worry but your symptoms sound very suspicious. I was just diagnosed 4 months ago with a possible autoimmune disease. Some of my symptoms are what you are experiencing but I had horrible aches and pains all over my body for the past 2 years. And I also found out that a drug I was taking for high cholesetrol could be causing it. I will be going to a lupus center for all testing again sometime in August and i hope they can give me a diagnosis. I was told lupus, fibro, mixed connective tissue disease (MCTD). I am much older then you but at your age the autoimmune usually comes out. They are all treatable and if you do have one, there are loads of medications for us to take. My ANA test came back just like yours. Are you waiting for more blood results? Are you seeing the doctor again? Mono can stay in your system for a very long time and can actually cause Epstein-Barr virus which just stays in your body with no harmful results but something to keep an eye on. Good luck to you and feel free to ask any questions. These boards are great with very knowledgeable people!

 
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Old 07-28-2012, 06:31 PM   #3
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Re: Advice on Autoimmune Disorders

Oh 1 more thing. Did they test your vitamin D? Mine was very very low. Make sure they do. Low vitamin D causes leg cramps, fatigue etc. Good luck

 
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Old 07-29-2012, 02:44 PM   #4
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Re: Advice on Autoimmune Disorders

Quote:
Originally Posted by NJLinda View Post
Hi rockcandy, I hate to say this to you to cause you more worry but your symptoms sound very suspicious. I was just diagnosed 4 months ago with a possible autoimmune disease. Some of my symptoms are what you are experiencing but I had horrible aches and pains all over my body for the past 2 years. And I also found out that a drug I was taking for high cholesetrol could be causing it. I will be going to a lupus center for all testing again sometime in August and i hope they can give me a diagnosis. I was told lupus, fibro, mixed connective tissue disease (MCTD). I am much older then you but at your age the autoimmune usually comes out. They are all treatable and if you do have one, there are loads of medications for us to take. My ANA test came back just like yours. Are you waiting for more blood results? Are you seeing the doctor again? Mono can stay in your system for a very long time and can actually cause Epstein-Barr virus which just stays in your body with no harmful results but something to keep an eye on. Good luck to you and feel free to ask any questions. These boards are great with very knowledgeable people!
Hi NJ Linda! Yes, I am supposed to follow a stict healthy diet for 3 months (no processed foods, etc) and then take the additional bloodwork 1 week before my next appt for the rheumy. I hate to say it, but this diet is hard to stick too when you work full time, etc but I am trying. Also, they did not check my vitamin d level yet but it is on the list for my next set of bloodwork so I will find out what it is at my next appt. I do get horrible leg cramps, mostly at dusk or night. I never thought it could be a vitamin D deficiency just thought it was restless legs? I guess I will find out! This is extremely frustrating.

 
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Old 07-29-2012, 04:38 PM   #5
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Re: Advice on Autoimmune Disorders

I agree, your symptoms sound suspicious and the reason for retesting is that results will vary from one time to another. Next time, It may be different and the range in which it fluctuates can be more helpful than a single test result. Fibro does not cause enlarged lymph nodes, but lupus can. anytime you feel feverish, I would take your temp and record it so you can document any fevers, also common in lupus, usually low grade. Low Vit D can cause restless leg syndrome and so can autoimmune disorders. it will help your Dr to keep a diary of your symptoms, briefly, to see how often symptoms are occuring.

 
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Old 08-14-2012, 09:30 AM   #6
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Re: Advice on Autoimmune Disorders

Did they check you for Sjogren's? I've also been told by an infectious disease doc. that HSV 1 & 2 can cause systemic symptoms like the one I get every few weeks. I take acyclovir and l-lysine for that. It's like a recurring flu with no fever. I used to get a lesion at the base of my spine also but the meds help with that.

Do you have any neurological symptoms other than restless leg? Migraine, insomnia? Weird skin sensations, dizziness, brain fog, TMD?

Keep in mind that some doctors put too much stock in SED rate. My rheumy thinks that BC my sed is always normal that I don't have inflammation, but my sed has always been 0 to 4. Same with my brother who has Sjogren's and fibro. We also have too much blood iron a lot of the time, but only 1 gene for hemochromatosis. Our D3 was also low and have had low b12.

It's good that you are getting tests done now at your age. I was told I had fibro since I was early 30s, and to learn to manage it. By the time I was late 40s I decided to go out of town for testing and had an ANA of 1:1280. So, my docs here finally started looking for other things. Long story short, in the past 2 years I've been dxd with lupus, sjogren's, with various neurological involvement, specific antibody deficiency, othostatic intolerance, blah, blah, blah.

If you have trouble sleeping you have to get help with that or your problems will probably snowball. If you have a family, get a good insurance policy now. Once you get dxd with sleep apnea, Lupus, fibro, etc. you can't get it.

Best of luck to you. Take good care of yourself, do your own research and don't put up with docs who dismiss your symptoms.

 
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Old 08-14-2012, 09:44 AM   #7
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Re: Advice on Autoimmune Disorders

Please ask Dr to check your serum iron and ferritin level on next blood tests, as low iron and ferritin can cause restless leg syndrome too, and commonly occurs in autoimmune disorders.

 
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