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Is this SLE?


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Old 07-10-2017, 04:26 PM   #1
xdenielx
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Is this SLE?

Hi guys,

So starting about 5y ago I started getting bizarre "headaches". I put "headaches" in quotes because I never had any pain, just dizziness, "head zaps" and disorientation. It wasnt until they put me on gabapentin an anti-seizure drug that they got better. Not long after the headaches got better I started getting limb pain. It started out only at night and only in my calves. It felt like a creepy crawly/deep soreness, which the drs diagnosed as restless leg syndrome. The pain slowly spread into my forearms and knees over time. About a year ago it started to become very aggressive. It's basically 24 hrs/day 7 days a week, and affects my calves, knees, hips forearm and bicepts. It basically feels like body-wide inflammation, and its completely debilitating and ruining my life. I cry myself to sleep several times a month.

I saw a Rheumatologist 2y ago. She mentioned that there was some weird stuff with my results, but that she didnt see any signs of inflammation so it "probably wasn't" autoimmune. Since then I've just been living with it since no one can tell me what it really is, but I just looked at the results in a moment of frustration, and I'm quite concerned.

I have a Rheumatoid Factor of 26.8. My ANA marker tested positive and I tested positive for Sm antibodies. I have mild anemia and leukopenia, which I've had since I can remember. I assume that my Reumie wasnt concerned because my anti-CCP and C-reactive proteins came back negative, so no inflammation I guess, plus I'm male. But this was 2y ago, before I felt like my joints were inflamed. In addition, my sedimentation rate was normal and dsDNA antibodies were negative. I havent had any rashes either, but I do think I have a very mild photo-sensitivity.

But isnt it concerning that I would have low white and red blood cell counts, a high RA factor, Sm-Anti bodies, in addition to this body wide pain syndrome, plus the seizure like headaches I was experiencing for so long? Does this not sound like it could be Lupus? I have 5 positive criteria on the American College for Rheumatologys 11 critera for Lupus. They say 4 could lead to a possible diagnosis.

Has anyone else with lupus experienced these types of pains, this constant and debilitating? If its not lupus, suggestions for what it could be?

Any opinions welcome!

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Old 07-10-2017, 05:45 PM   #2
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Re: Is this SLE?

Quote:
Originally Posted by xdenielx View Post
Hi guys,

I posted something similar in the general autoimmune forum, so I'm sorry if youve seen this twice.

So starting about 5y ago I started getting bizarre "headaches". I put "headaches" in quotes because I never had any pain, just dizziness, "head zaps" and disorientation. It wasnt until they put me on gabapentin an anti-seizure drug that they got better. Not long after the headaches got better I started getting limb pain. It started out only at night and only in my calves. It felt like a creepy crawly/deep soreness, which the drs diagnosed as restless leg syndrome. The pain slowly spread into my forearms and knees over time. About a year ago it started to become very aggressive. It's basically 24 hrs/day 7 days a week, and affects my calves, knees, hips forearm and bicepts. It basically feels like body-wide inflammation, and its completely debilitating and ruining my life. I cry myself to sleep several times a month.

I saw a Rheumatologist 2y ago. She mentioned that there was some weird stuff with my results, but that she didnt see any signs of inflammation so it "probably wasn't" autoimmune. Since then I've just been living with it since no one can tell me what it really is, but I just looked at the results in a moment of frustration, and I'm quite concerned.

I have a Rheumatoid Factor of 26.8. My ANA marker tested positive and I tested positive for Sm antibodies. I have mild anemia and leukopenia, which I've had since I can remember. I assume that my Reumie wasnt concerned because my anti-CCP and C-reactive proteins came back negative, so no inflammation I guess, plus I'm male. But this was 2y ago, before I felt like my joints were inflamed. In addition, my sedimentation rate was normal and dsDNA antibodies were negative. I havent had any rashes either, but I do think I have a very mild photo-sensitivity.

But isnt it concerning that I would have low white and red blood cell counts, a high RA factor, Sm-Anti bodies, in addition to this body wide pain syndrome, plus the seizure like headaches I was experiencing for so long? Does this not sound like it could be Lupus? I have 5 positive criteria on the American College for Rheumatologys 11 critera for Lupus. They say 4 could lead to a possible diagnosis.

Has anyone else with lupus experienced these types of pains, this constant and debilitating? If its not lupus, suggestions for what it could be?

Any opinions welcome!
I would absolutely see another rheum, with your symptoms and results. One not need every lab result to be positive or every symptom. Anti Smith is very specific for lupus and lupus and RA can coexist. (I have both). My inflammatory markers (sed rate and CRP are never elevated. No one seems to exhibit all the classic textbook symptoms and labs. You have enough evidence to warrant a diagnosis and treatment, which should make you feel better and function better. You really need to pursue this. A new Dr will likely want to repeat some tests, since it has been awhile. But be sure to take your previous results with you, as well as a list of symptoms.

 
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Old 07-11-2017, 04:20 AM   #3
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Re: Is this SLE?

Good morning. I think you should see another rheum. Re finding one. Are any teaching hospitals nearby? The doctors there often are more "cutting edge". Barring that, your local library would have "best doctors" books /articles with lists by specialty.

Re RF. One of my lupus hardcovers says that 20 to 30% of SLE patients have a positive RF, which I take to mean that you can have a positive RF without having RA. (The rheum would work thru the ACR diagnostic criteria for RA to determine that.)

Inflammatory markers. My ESR only elevated decades ago when I was a teen. You can see from the lupus ACR criteria that neither CRP nor ESR are "required" for a dx.

I get "head zaps" but have never taken anything for them. (For migraine-like headaches years ago, I took Bellergal or Fiornal.) Have you checked the side effects for Gabapentin? I think muscle pain is listed as possible. That said, I certainly had widespread pain before dx, both muscle and along my long bones (shins especially nasty).

About counting criteria. My current rheum explained that once each is fulfilled, it should be considered *permanently* checked off, as though written in indelible ink. (None of my previous doctors got this critical point!) So be sure to take all old labs with abnormal values that you can gather. Send us updates, OK? Actually, write anytime, we're always here. Hugs, Vee

Last edited by Administrator; 07-11-2017 at 07:22 AM.

 
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Old 07-11-2017, 06:14 PM   #4
ccc073
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Re: Is this SLE?

My case was similar to yours. My anti-smith was very high. I don't have rash, but do have inflammation. The doctor told me, you can have lupus without anti-smith being positive, but it is rare for a person to have positive anti-smith and not have lupus. I think you need to see a new Rheumy.

CCC

 
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