What is Lupus
Systemic lupus erythematosus (SLE or lupus) is a chronic, potentially debilitating or fatal autoimmune disease in which the immune system attacks the body's cells and tissue, resul...
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Ok I went to the doctor she is really nice I really liked her. Anyways she is leaning more towards multiple sclerosis or lupus or it could be both.. Then she said that it could also be that my Lymes disease did some major damage. She wants me to go back to my neurologist and tell him to test me for MS. She is also sending me for more blood work. Also she wants me to go to NJ and see a doctor there for Lymes. Because Fl doctors don't know anything about Lymes or how to treat it.. So yeah still no pain meds cause she wants my blood work back.. I am right now in chronic pain. I might have to see my regular doctor. there is no way I can wait 3 weeks.. Anyways just wanted you guys to know..
Posted on 07/01/09, 11:07 am |
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Oh I hope it is not both lupus and MS although it is not unheard of. Lymes is a nasty one too. I am sorry she did not give you any thing for the pain though. If she was in your shoes for a day I am sure she would think differently. At least she is getting you checked for everything and that is a good thing. hugs and hang in there. marilyn 
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I am glad it was a good appointment & they are going to do the testing necessary to get you some answers. I am formerly from NJ and in Florida now too. We just a tick off of my puppy the other day. I would be surprised if there are no doctors in Florida skilled at treating lyme disease especially with all the snow birds we get from the East. You might want to post on the DS Lyme Disease group or check with your insurance company to see if they have any suggestions for local doctors. Goold luck & let us know how your test go.
Heather
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Thanks Marilyn and Heather,
I made an appt with my regular doctor tomorrow. I can't take the pain someone has to give me something till they figure this out. I feel like I want to cut my legs off. Well not literally but my legs are hurting me something fierce. I have a high pain tolerance.. I gave birth 4 times with no drugs.. So I know this pain is serious. Anyways thank you for your support. I will let you all know what happens. Hugs
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Gidget,
Did you ask about the testing for Antiphospholipid disease??? glad you liked the dr. xo meliss
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No I forgot.. Damn it.. She is doing so much blood work she said that the test usually take 11 to 14 days to get the results. Here are some of the blood test she is doing. Not sure what they all are but here it is..
angiotensin ace ana anti ds dna cardiolipin antiboties cbc c3 c4 cpk metobolic panel c reactive protein cyclic citrulllinated peptide ebv titers ena panel hep b hep c hla b27 lyme titer rheumatoid factor I hope that they figure this out and soon..
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Gidget hi, hope your GP will give you something for your pain, like you said you cant wait 3 weeks for meds thats crazy, thats not fair to anyone to wait like that. I bet she was just over loaded with all the things you told her, that she didnt even think of pain meds. Hope you get some relief soon. XXX Cindi
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Gidget....please call the dr. and ask if she can add the Beta 2 glycoprotein test. I have PRIMARY APS and was in such severe pain from it, sick from it, I wanted to die.If it werent for my rheumy testing me with the particular blood test I could have died from a clot. Back then, except for one elevated ANA all my test results were normal. Cardioplin is not always accurate with APS. I know this for a fact. The APS tests were the only ones that constantly came back highly elevated...Please call her. You can google lyme disease and APS and see the connection.
hugs Melissa
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Melissa,
I will see my regular doctor tomorrow is it something she can order? If not than I can call the Rheumy doc tomorrow and ask. Thanks for always looking out for me..
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Gidget,
There is absolutely NO REASON for the docs to WAIT until your bloodwork comes back to give you pain meds. That's ridiculous. When you see your doc tomorrow, be upfront about your pain. There is no reason to suffer needlessly; it's not like waiting will have any effect on your test results. Tracy
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Yes. It is a specialty test but a regular dr. CAN order it. Its the Beta 2 glycoprotein test for antiphospholipid disease. If your regular dr. questions you tell him you want it because there IS a link between APS and Lyme disease and if they say "You CANNOT have APS without a clotting episode" tell them that is FALSE. I can back this up by numerous rheumatolgists and APS information. You can get severly sick from aps (like I am) without clotting. It is better to be safe then sorry.......Its just a blood test.
meliss
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