LUPUS UK
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USA- Just diagnosed w/ Lupus @age 76 Appt.next week Boston Beth Israel-Deaconess hospital lupus clinic. But hear the best clinics are Sheba Med, Israel & Hopkins, Maryland, USA -both "too far" to drive :-)

It "takes a lot to get a test for Lupus" here - have been asking for tests for possibilities for years, Drs. never made leap to Lupus 'til I off-handedly mentioned that more severe generalized pain & severe incapacity seemed linked to atmospheric pressure. I have had a lot of misery over time but it "always went away" and Subsequently was not taken seriously

Googling almost non-stop since diagn........there's a lot of info out there. Also, Have learned a lot of connective tissue issues on both sides of my parents....? Also husband's both sides - concerned about my children.....what/how should I say to them ?(after appt)

Does anyone find that benedryl antihistamine is useful w/ symptoms ? Does any form of yoga/physical therapy/acupuncture help ?

My handwriting has deteriorated a lot over time. Sometimes I "can almost feel" a thought, short-term memory, etc. evaporating. ......sometimes a thought will return - sometimes, not

I'd appreciate any thoughts, comments, advice from you.

Best, Dianna123

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Hello and welcome dianna123!

I'm also in the US. Diagnosed with SLE in July 2014 (unwell for approximately 2.5 years prior).

Yes, takes a long time to get diagnosed here. (I also have Sjogrens and hypothyroidism - being checked now to determine to see if my HypoT is autoimmune related, aka, Hashimotos, which I've always suspected). Are you on any medications yet?

I take a antihistamine nightly and find that it does indeed help, but not sure why to be honest. Would love to hear about your experience with Beth Israel - I didn't know they had a lupus clinic - and what they say about that and, lupus in general. I live north of Boston and see a rheumy in the Lahey system. My lupus is considered "mild" - which simply means, "no major organ involvement".

It's interesting that you speak of atmospheric effects - I know the changes in weather absolutely affect me but haven't read anything about how or why.

Good nutrition and hydration is also helpful.

I don't do yoga but have done all I can to remain physically fit. I use my elliptical trainer 3-4 times/week, do weight training to tone and strengthen and also, abdominal/core exercises. I admit - I push myself hard because I love to feel strong. Sometimes it is very difficult but I find sweating and getting heart rate up keeps my joints loose and getting the blood flowing helps with headaches. I listen to my body and rest when it tells me I should.

With lupus, you need to stay out of the sun (for me, sun/heat drains me and and causes me to feel unwell). Tough for me since I am a "summer girl". I do miss that part of life but do try to get outside as much as I can, keeping to the shade and wearing hats.

Good luck with you doc appts!

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Thx for your response, m.w.

Bet there are other lupus clinics in Boston. They seem to be "numerous" in general and connected to teaching hospitals. There is one at UConn, nr. Hartford, and I think I may end up with them.....closer & distance will play a part over time. Live in NW CT

I called Beth Israel just to get some general info but before I knew it, I had a timely appt and a patient # ! They were very efficient.

No special meds, as yet. Benedryl seems to help a bit sometimes. Feeling "unwell" for 40+ years. Have decent skin for my age, as being in sun always felt 'unpleasant'

Lots of "middle Europe" in my heritage. (I'm DAR eligible) to early 1900's emigration. That geographic area is a possible tag of 'origin'. My husband's family is UK "all the way" and 'Lupus' in both lines ? ??

Later, dianna123. (Carole)

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I had 1st appt. at Beth-Israel Deaconess Boston yesterday. The whole experience was very nice. Everyone was quite pleasant and v.e.r.y. efficient.

Reams of info sent ahead to them .....but it seems they really don't take that into account......- start from scratch with their own tests & own lab to make their own conclusions and go on from there. Will go back in a month.

The Dr's "interview" took about 1 1/4 hours. Asked no surprising questions but ordered a lot of blood tests......including, I noticed, one for Scleraderma antibodies

- dianna123

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Wow - does sound like they are covering everything under the sun (which is good). I would think that you would hear about your results of all the testing sooner than 1 month (or is that not correct?) I waited 10 days for my results and THAT seemed like a very long time (the waiting is the hardest part, as Tom Petty says) - can't imagine waiting an entire month.

Still no medications for you? Even though you've already had a lupus Dx? How did they advise you to cope in the meantime?

I do hope you get this all sorted out...the sooner you know exactly what it is you have, the sooner you can get onto a proper treatment protocol.

God bless -

T

p.s. My sister has Scleroderma (she actually has what is referred to as C.R.E.S.T, where the "S" is for Scleroderma; "R" is for Raynaud's (that was the first autoimmune disorder dx she got when she was 21). Can't remember what the other letters stand for, but they are all AI components. She doesn't complain much about her ailments and doesn't seem to be nearly as incapacitated as I am with my lupus (SLE) and Sjogren's. In fact, I only found out that she had CREST in 2014 when I was going thru my mysterious medical issues...she never really told anyone because she didn't think it was 'relevant'! Had I known about her AI dx's it would have made getting me diagnosed MUCH easier. Suffice it to say, ALL family members now are in the know about both of us...just in case....

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I can access test results on line as they are available, but 'some' not back for 2 weeks. I didn't ask for medication & No medication prescribed......seems like they don't do anything based on info they don't come up with themselves ??

Ah, Dr. said I really don't have a Lupus diagnosis as far as they're concerned.....more of their own testing, own Lab doing the analysis. I 'cope' as I have been. Who knows, it may be something else altogether ?

Will keep you posted

dianna123

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Please do. I hope you get some answers soon!

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I am still waiting.....they couldn't do the "specific" blood tests (not enough blood)!

Loosing confidence.......?

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Sorry to hear that. Will they be drawing more blood then??

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It's a reboot :-)

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You lost me here... Please explain?

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......"start all over"

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Ha! It would be funny if it was reoccurring Lyme ?

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Were you bitten by a deer tick? I'm just very confused.

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Sorry to confuse the issue......attempt at 'dark humor'......maybe the whole deal/original test is a mistake from the beginning ? Ha! Ha! It would make more sense to me if it were something else.....may be something else entirely different than lupus (at the rate this journey is lurching along :-)

- of course I've been bitten by a tick.......many, many times (can hardly avoid it where I live) everyone in my family & everyone I know has had Lymeat some point.

It would just be ironic if I, who never tested positive for Lyme, would test positive for something else(from left-field:-)

I am nervous that BED, which I had such confidence in has failed notably to perform seamlessly

dark humor ?

d123

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Relax and talk about your concerns with your family, your children will support you. Go well, Kevin. Chair Lupus UK

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Hi dianna123,

Welcome to the LUPUS UK community forum.

Is your main concern regarding your children whether they may also develop some form of connective tissue disease? It is very rare for the child of someone with lupus to also develop the condition because of the large number of genes believed to be involved and the need for an environmental trigger. Studies show around 1-in-20 to 1-in-70 children of someone with lupus also develop it. We do sometimes hear of families that seem to have a high prevalence of autoimmune disease, so it can happen. If your children have unexplained symptoms such as joint/muscle pains, fatigue, skin rashes and hair loss it is worth getting tested for autoimmune diseases, otherwise they should carry on as normal.

We published an article on our blog about exercise in lupus which covers lots of different types and experiences from people with the disease. You can read it at lupusuk.org.uk/lupus-and-ex...

The problems with short-term memory that you describe sound like brain fog which can be a common symptom of lupus and similar conditions. You can read more about this at lupusuk.org.uk/coping-with-...

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