multiple weird symptoms should indicate thorough medical work up needed

[Guest guest]

I agree with what said about seeing an endocrinologist and

also think that any of us having multiple symptoms needs to go back

to our GP and discuss having work ups in several specialty areas and

get referrals and/or go to our state or regions' medical university

and get worked over.

Speaking only for myself, in periods where pred and all the other

drugs has not been able to control my SOB, short term high blood

pressure has resulted. Because I can't get my lungs to send enough

O2 to all my parts, my heart has to work harder to pump blood in an

effort to do so. Fortunately this has happened only a few times, but

anyone in this boat on a regular basis needs to examine it further!

Take care all,

Addy

Group co-owner

>

> > Hello Group!

> >

> > I was wondering if anyone in this group knows much

> > about Churg Strauss

> > Syndrome.

> >

> > I have specific reasons for asking...

> >

> > I've mentioned to the group in the past, that before

> > Xolair came into my

> > life, I was completely steroid dependant, at 60mg of

> > Prednisone a day, and

> > even at that dose, I would frequently end up

> > admitted to the hospital on IV

> > solu-medrol.

> >

> > Beyond that, for several years, cycling on and off,

> > I have had severe

> > tingling/numbness in my arms. More often it is my

> > left arm, and along with

> > the numbness cycles, I will experience bouts of

> > extreme muscle pain/aching.

> > This isn't constant, but will occur only during the

> > cycles of numbness, and

> > is excruciating. The only relief I get is to take

> > strong muscle relaxers

> > and high dose vicodin together. I'm experiencing a

> > bout of this now.

> >

> > Ages ago, before starting Xolair, out of curiosity,

> > on the medical websites,

> > I typed shortness of breath, numbness, tingling,

> > granulomas, and rashes into

> > the search bar. Churg Strauss popped up on every

> > single one of them.

> >

> > Now, I'm curious, because I don't know much if

> > anything about this illness.

> > My granulomas have been limited to my feet and hands

> > thus far, to my

> > knowledge, I don't have any on my internal organs,

> > but honestly, I've never

> > asked the doctors to go searching either, not

> > knowing that they could be

> > related to my lungs.

> >

> > My dermatologist seemed incredibly shocked that I

> > could have granulomas at

> > all given the high doses of steroids I had been on

> > in the past...

> >

> > Xolair has been working quite well for me, but I say

> > that compared to how I

> > was in years past. I will admit that recently

> > (since pollen season has

> > begun, and with the recent wet weather in the

> > northeast has caused molds to

> > increase dramatically) I have been incredibly short

> > of breath. My oxygen

> > level has been very low (for me) and I am constantly

> > coughing and wheezing

> > again. It has been suggested by my primary care

> > that I run a course of

> > prednisone, but being stubborn, I wanted to see if I

> > could make it though

> > without steroids since I worked so long and hard to

> > get off of them and to

> > lose the weight that went with it. It's been a

> > struggle, I'm back to

> > nebbing every 4 hours without fail, and am NEVER

> > completely clear. I did

> > increase my advair.

> >

> > What I do know of Churg Strauss, is that it causes

> > steroid dependancy... I

> > don't know too much else about it. I'll admit that

> > for the first time in my

> > life, I'm afraid to ask my doctor about it. I don't

> > want him thinking that

> > I'm looking for more problems.

> >

> > My neurologist has been screening me for Multiple

> > Sclerosis for the past

> > several years because of the numbness and tingling

> > in my arms. My mother

> > and her brother both have MS, so I think it was

> > natural for him to jump to

> > that conclusion, and for my other doctors to do the

> > same. Since Churg

> > Strauss seems to be so rare, is it possible that

> > this is something that

> > could have been overlooked, or is it possible that I

> > am in fact reaching?

> >

> > Any opinions and or information you could all give

> > me would be greatly

> > appreciated. I'm not usually the type to be timid

> > and shy around my doctors

> > and I'm usually incredibly knowledgeable about my

> > illness. I think I'm

> > afraid of being shot down when it could be the most

> > important time ever.

> >

> > Thanks in advance

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

>

>

>

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>

>