Re: Re: Your appmt.

[Guest guest]

Hi ,

I didin't get to reply to your E-mail wt. your backgroud. you said got DX in

March? . can you tell me what were your symptms leadind up to that point &

for how long? It's amazing to me how long some of us has had to wait to get a

DX. I still don't ( RD knows it IS an autoimmune desease, but we still have

to pin point the particular. Thank fully they do treat them almost all alike.

that is supresinsg your inmume systm. from atacking you. I wonder HOW many

members got diagnosed AFTER allreaddy being ON treatment ?

So do you accually have cancer now due to the Embrel induced lyphomas?. I

figure that once you're on it they'd keep a very close eye on that type of

" mayor infeccions, so did they follow you up closelly?.How old are you ?I just

turn 53. Had F.M after an auto accident & 7 yrs. after began to see the F.M

" change " Alot of members either get on or the other before or after, so we 've

had a lot being diagnosed wt. both. I think both cond. are closelly related.

It'd be nice to get a list up wt. some of this questions to see just how

many things we all have in common.

I hope every thing gooooes well for you on this treatment.

Huggs

VIvi

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[Guest guest]

Hi Vivien,

Lets see if I can answer if I repeat anything I have already told you, sorry.

In 1993 I had the high WBC of 60,000, fever, hurting all over, and anemic. Spent

10 days in the hospital with all the usual test, bone marrow, spinal tap, CT

scans, blood work , etc.. Went home with fever of unknown origin and it went

away.

10 years later started happening again not as severe, I would be sick for a

couple of weeks at a time and it would go away. First time I saw a rheumy 2003,

she told me I had Lyme disease arthritis, sent me home with anti-inflammatories

and come back and see me if you get worse. Funny I never had Lyme disease. In

2004 another episode lasting a little longer went to a different rheumy, gave me

the Dx of Lupus, started on prednisone and Plaquenil, after 3 months no change,

add Imuran, 3 months no change, was told basically to live with it. By the

summer of 2005 I was slowly getting worse, trying to work pretty much almost

killed myself working 80 hour weeks, thinking I was crazy. At this point I was

sent to a Hematologist, where he did discover that I had iron deficient anemia,

and the bone marrow showed no iron stores, bingo thats it , that is why I am

always tired, get a iron iv's over a couple of months doing better but not well.

End of 2005 met 3 Drs

that changed my life, A new Hematologist, new Rheumatologist, and new GI

doctor. It was a dream come true, these 3 where all on the same page and they

communicated with each other, even though I was going through the same test as

before it was so different the actually talked to me, not like I was no one and

told me I had to live with it, so slowly but surely the pieces of the puzzle

fell into place. By Jan 06, I had a partial gastrectomy (half of my stomach

removed) I was not able to digest my food and my stomach quit emptying, so I had

major reflux that occasionally I would get an aspirated pneumonia, 9 months

later I had the rest of my stomach removed and about 3 feet of my colon, again

quit working. All along my 3 docs kept saying we think we know what it is, but

not all the pieces are there. Middle of 2007 I had my spleen, gallbladder,

appendix and some more of my small bowel removed. In Dec.2007 all the pieces

were coming together, I had fevers

everyday and into the evening 103 or more by morning I was normal, my WBC would

run from 80,000 down to 30,000 was the lowest it would get and despite being

anemic, joint pain and swelling that would leave me in tears from pain, my

ferritin level was 5,000, thats what tipped my docs that it had to be Stills. I

stopped working in Jan. 2008 I am a Physician Assistant closest thing to be a

Doctor, I still wanted to be a Doctor and was to start Med School this past

fall, needless to say that's not going to happen. After surgery recovery I

started MTX, prednisone, and Plaquenil, it never really helped. So, in July 2008

we added Enbrel, after lymph node biopsies at the end of Oct.2008, they showed

all the components of B-Cell Lymphoma, its not full blown and is only in the

lymph nodes in my neck, so I really hope I get to start my Cytoxan tomorrow.

My docs did keep a close watch I went to weekly visits to my Rheumy and

Hematologist had blood work every time was really starting to feel better,

joints got better, fevers came down and for the first time in 3 years my

temperature stayed down to 99 degrees and my WBC has been as low as 12,000 I was

getting so excited that this was it. But, one day in Sept. the lymph nodes in my

neck were swollen huge, my WBC went back up and started with fever again. After

no change for 2 weeks we stopped the Enbrel , had a CT scan of my neck and the

surface lymph nodes were swollen and even the deep nodes were huge, that's when

I got sent to an ENT surgeon to do the biopsies, of course nothing is easy and

he had trouble during surgery because everything was just a huge wad of

inflammation. Also had my tongue biopsied, dont recommend that one.

Well I think that's pretty much it, I think.

OH, I am 42 yrs old and have 2 sons is 25 and Tyler is 18.

Hope I didn't put you to sleep,

Take care you will find an answer soon, try not to get discouraged, sometimes it

just takes awhile

________________________________

To: Stillsdisease

Sent: Monday, December 8, 2008 2:59:48 PM

Subject: Re: Re: Your appmt.

Hi ,

I didin't get to reply to your E-mail wt. your backgroud. you said got DX in

March? . can you tell me what were your symptms leadind up to that point &

for how long? It's amazing to me how long some of us has had to wait to get a

DX. I still don't ( RD knows it IS an autoimmune desease, but we still have

to pin point the particular. Thank fully they do treat them almost all alike.

that is supresinsg your inmume systm. from atacking you. I wonder HOW many

members got diagnosed AFTER allreaddy being ON treatment ?

So do you accually have cancer now due to the Embrel induced lyphomas?. I

figure that once you're on it they'd keep a very close eye on that type of

" mayor infeccions, so did they follow you up closelly?.How old are you ?I just

turn 53. Had F.M after an auto accident & 7 yrs. after began to see the F.M

" change " Alot of members either get on or the other before or after, so we 've

had a lot being diagnosed wt. both. I think both cond. are closelly related.

It'd be nice to get a list up wt. some of this questions to see just how

many things we all have in common.

I hope every thing gooooes well for you on this treatment.

Huggs

VIvi

************ **Make your life easier with all your friends, email, and

favorite sites in one place.. Try it now.

(http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco

m00000010)