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Old 10-14-2009, 02:40 AM   #1
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Post All the questions I should ask at seminar

Hi to all,
as you know I have been newly diagnosed. I am going to a lupus seminar tomorrow night with my partner and my family in tow.
My problems so far are:
Skin rashes, nasal ulcers, exhaustion, pain in hands feet and hips, stomach cramps, acid reflux, headaches, sight problems (feel like I am looking through haze after being in the sun) muscle aches, mouth ulcers and discentry, depression.
Diagnosis so far:
Lupus, hoshimoto's, ceoliacs.
I think thats all, well all I can think of cause I feel like my mind is made of mush these days.
All Info will be very welcome.
Blessings to all out there suffering.
Tess

 
Old 10-14-2009, 03:42 AM   #2
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Re: All the questions I should ask at seminar

Tess, here are some suggestions for questions to ask @ upcoming seminar. (I don't have questions for Celiac & Hashimoto issues, but I hope someone here does & adds some.) I hope your "team" and you learn useful stuff, Tess, and that you start to feel better soon. Sending best wishes to you all, Vee

Sensible sun protection procudures: Hours to avoid/limit sun? Product advice for sunblocks, hats, clothing, and sunglasses? (FYI, I had fuzzy vision, too, after sun & felt "shockish" all over; but it stopped when I began avoiding.)

For nasal & oral ulcers: Recommended treatments?

Skin rashes: If any have scarred your skin &/or not healed properly, reco's on who could repair. (Skin should at least heal over, to keep germs, etc. out.)

Acid reflux: How bad is "bad"? How can you tell if you need treatment?

Are there prescription drugs, OTC's, natural remedies, foods & beverages NOT recommended for people with lupus?

 
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Old 10-14-2009, 04:07 AM   #3
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Re: All the questions I should ask at seminar

Bad is vomit every day usually have to stop car on the way to work to throw up then throw up at work for first 30mins, Nexium 40mg to try to settle it but not working very well at this stage.
Thanks for the info and best wishes veej, I really do appreciate it.
Tess

 
Old 10-14-2009, 05:14 AM   #4
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Re: All the questions I should ask at seminar

Tess, did your drs. docus on the (awful) daily vomiting & look beyond reflux to OTHER possible causes? In your shoes, if Nexium isn't helping, I'd want to hear about OTHER possibilities, what each might feel/act like, etc. I'd bet multiple causes are possible, but I'm only a patient, of course. My mother had bouts before her drs. realized her gallbladder was inflamed; she had it removed. I hope you can make more sense of this quickly! Best wishes, Vee

 
Old 10-14-2009, 08:44 AM   #5
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Re: All the questions I should ask at seminar

Hi, you say you were diag. with lupus, did your dc. put you on hydroxychloriquine? That keeps my rashes under control. Your symptoms go with lupus,your stomach cramps could be IBS,that does go along sometimes with lupus. I went to see a specialist in that field and he helped me about 50%.And put me on hyomax and align. But I think I would also check into arthitis. It might help to keep a diary and wright down every symptom that happens.Some medicine also can cause blurred vision. GOOD LUCK home sweet home

 
Old 10-14-2009, 05:41 PM   #6
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Re: All the questions I should ask at seminar

So...how did the seminar go? Did you partner and family gain some insight?

 
Old 10-26-2009, 01:57 AM   #7
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Re: All the questions I should ask at seminar

My partner was fantastic and so were my family. It was a lot to take in and my partner kept squeasing my hand in that very loving way, I new he was stressed but he did'nt want me to know. They have all been fantastic, at least now they all understand that I can feel great one day and can't get out of my own way the next. Now when we make arrangements they ring on the day to see if I am ok, there is no pressure now to do things I don't feel up to. Thank you all for your support.
Tess

 
Old 10-28-2009, 06:48 AM   #8
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Re: All the questions I should ask at seminar

Tess,

That’s awesome to hear! There’s nothing like family support.

Veej, the only thing my rheumatologist keeps mentioning in regards to sun is to avoid it :-) (Depending on the severity of lupus you have). If you have to be out for a length of time then sunscreen (Highest SPF) & securely coving up all parts of the body is suggested.

My Acid reflux is extremely bad. This is something I brought up to my doctor last week after experiencing it over a year (thought it was normal). The belching is so un-lady like!
There are prescription drugs prilocet (check my spelling on that), that my doctor prescribe for on yesterday. I'll check back in next week & let you know if it worked.

Hope all is well

- ResilientRed

 
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