In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator
Lynnwood, Co-Moderator: Lupus ForumSLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, ValtrexLinks: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions
I'm living in Orlando Florida and this is where my Neuro is, she does all the Acupuncture herself. On each of my visits the majority of patients there are for acupuncture.
I was born in Hinckley, Leicestershire and lived in England until I was 32, this is one of the main reasons why Lupus keeps getting dropped as an option. Apparently Europeans don't get Lupus.
This whole thing started about 2 years ago, until then all was fine. I trained police dogs and worked for the MOD, police and prison service and in my spare time raised 6 kids. Then I got pregnant with number 7 and it was hard work getting pregnant and the whole thing felt wrong I had a miscarriage and they found at that time that I had 2 antibodies in my blood. Also 4 weeks after I had to dash back to England as my mother was passing, I got there and sorted all the arrangements for that, and kinda thought that I was struggling to think, but put it down to the loss of my mother rather than an illness.
After this I never got on my feet, I mean I walk around but so slow and I have lost my balance gained weight, then the thyroid got spotted for the weight gain but still I cannot get any pace back to my life. I walk around in a fog I have to think to stay focused in a conversation. I have noticed a pattern to this first I get like a acne breakout on my face or in my hair, then I get the headaches and eye pain, blurred vision, a few weeks on the fogginess gets worse then the lack of interest in anything sinks in and the numbness starts. the pain and fatigue kick in and I spose around this time I just sleep. Then my head clears it is like OMG great the best ever and this lasted for 2 weeks then the whole cycle started again. There was 2 cycles in the one year and I'm on another cycle now.
I have told Doctors the exact above and they tell me they think it is MS because they say the eye pain is ON. But after the MRI was clear they ran tests for B12 and Lymes, Diabetes and even HIV - they all come back clear and so I get that they think it is all in my head. They advise me to just take Ibuprofen to keep the Arthritis down and Acupuncture to make the joints more supple.
That is the best case history I can give. Thank You so much for your advice, it is so nice to have someone listen to me and not judge me as mad.
Post Edited (Lynnwood) : 1/20/2008 10:33:12 AM (GMT-7)
Hey thanks again,
I have read the Lupus Resources as suggested. I guess allot of it is common sense, but when we are with the Doctor we do tend to get flustered and forget. (The idea of the pictures is fantastic)
I didn't know that IBS was a symptom or connected to Lupus I have had that for several years. I suppose the more I look into this the more it sounds like I have found what is wrong. (Not sure how I feel about that yet)
I suppose now I have done the doctors job and found out what I have, I should now get busy convincing them that I have it, or at least get some help with some of it. Acupuncture will not do it.
The IBS/ IBD I have no idea what one I have. When it first started they said Crohns and I was in hospital I got de-hydrated and was not good. They put me on sulphur and some pain meds and anti nausea all was OK. I mean there are still some drinks and food I cannot put to my mouth unless I stand next to the bathroom door! But on the whole I can cope.
Then I came to America and got told that it isn't Crohns it is just IBS so they stopped the sulphur and the pain and anti nausea. And I spent the first year of my American experience in one hospital or another rolling in pain. The emergency room would do their job and place a cocktail of drugs into me, rehydrate me and get my blood pressure back down. I would leave and my doctor would say the tests are fine it is just IBS all triggered and upset due to a different diet. I believed him the diet is so very different over here.
I then went and stayed with a close friend in Colorado so I could see another part of America and while I was there I got ill. I got fixed up at the local emergency room and went to a follow on with a Gastroenterologist. He said my Doctor in FL is a joke there is no way I have IBS, But that was the end of my visit so I was back on the plane to FL. I know that the Gastroenterologist wrote to my doctor as he mentioned it, but nothing came from it.
I seem to be rambling here. I will for sure document everything.
Thanks for your time.