Re: Sjogrens syndrome with AIH-

[Guest guest]

Hey , My GP diagnosed and treated me for AIH back 2000. I have had liver problems chronic hep since 1976. I have been dx with a"lupus like syndrome" The liver doc diagnosed me with NASH 2003 because I did not have a positive ANA or SMA. My biopsy was inconclusive on the type of disease but positive that I did have something. My liver doc said that for now he is going with NASH because of my labs. BUT... Steriods are the only thing that has helped me so far over the years. This is not typical with NASH.

I have a funky rash also that always appears before I have a flare it is on my chest neck and across my face. It burns like a sunburn and hurts then it will itch like crazy and peel then start over. I can bet big money when I get the rash that my liver enzymes are elevated. (know any rich gamblers??? LOL)

I do not have the eye dryness. I have the opposit of that to much fluid. I do have horrible joint, muscle and bone pain. The fatigue is overwhelming. Like you I get really sick with nausea, vomiting, dizzyness that is major, and migrains.

Hang in there. I am so sorry you are going through so much right now.

Sherry

Be Dead to your past, be Alive in the present and be Excited about your future! ~Sherry>From: "traceyf1980" >Reply- > >Subject: [ ] Sjogrens syndrome with AIH >Date: Wed, 07 Jan 2004 06:18:20 -0000 > >I was just diagnosed by an opthamologist with Sjogrens Syndrome. >Characterized by dry mouth, dry eyes. My eyes are so severe that >there are not hardly any tears. I had been fatigued and my joints >were bothering me, so I went to see the liver doctor who drew my labs >and all were in the normal range, except very mildly elevated alk >phos. > >He sent me to a rheumy because I had a funky looking rash that could >have been lupus...( dermo biopsied that and it was not lupus but a >fungal rash probably brought on by a lowered immune system ). Anyway >my eyes started hurting terribly, pressure redness and swollen over >the iris. > >Rheumy has sent me back to the liver doctor because he said that >Sjogrens is VERY common among those with AIH, or PBC. I told him >that I have been diagnosed with neither....biopsy showed NASH only, >yet I do have ANA positive and SMA positve....the only other thing is >slightly elevated C-reactive protein. Liver doctor had put AIH on >the back burner to see what happened after the NASH was under >control...Now I fear I have AIH also, my numbers have been normal for >about 10 months. Boy, do I feel sick though, nausea, fatigue, >headaches, MAJOR dizziness, and joint pain. Just worn out. > >Anyone else out there been diagnosed with Sjogrens along with their >liver disease?? > >Thanks >Tracey > Take advantage of our limited-time introductory offer for dial-up Internet access.

[Guest guest]

Yes..Sherry thats exactly it!

My liver doc has for the past year said that I had lupus like syndrome.

I did get the rash first this time...just small circles on the upper arms. My blood is negative for lupus, I only have an elevated ANA ( slightly) SMA and now mildly elevated C-reactive protein.

The dizziness is really scaring me! I am afraid that it is heart related. I have not had any heart problems so far, but my father died of a heart attack at 34!

My doc is out of town, had an appointment with his nurse practitioner today, got stuck in traffic and was 20 minutes late, when I got there they told me to go home!

I think the worrying is making me worse.

Thanks though, your symptoms sound so familiar??

What about the glands in your throat?? Mine are very sore, especially under my jawline and in front of my ears.

Tracey

[Guest guest]

Sherry,

Boy all of this sounds so familiar....

My father had a blood clot that traveled to his heart. Dont know if he had high cholesterol because back in the early 70's they didnt do as much testing on all of that. My cholesterol is not to bad its under 200, but I take URSO and I think that helps a bit.

My dizziness is very odd. Doctors have asked me am I spinning or is the room...and Im not sure how to answer that. I will be driving and suddenly I feel as if my eyes are fixated on something and I cant drag them away....I always feel as if someone is shaking the inside of my head. Last time I thought it was a seizure ( I dont know that because I dont know what having a seizure feels like ). I had a EEG and nothing showed as far a seizure activity. The spells like that are just momentary...last a minute or less, but boy do they scare the $ & ^% out of me!! I also sometimes get dizzy spells when I lay down, and move my head certain ways...I always feel like the back of my neck or back of my head is involved somewhat. Also I have noticed that I cant drive the car and talk on a cell phone..the humming in my ear and if I hold the phone between my ear and shoulder makes me VERY dizzy.

My ears feel itchy inside and when Im in the car I feel pressure in my head. Not sure if that means anything. My glands though are very sore and that I feel is from the Sjogrens. My Rheumy keeps asking me if my mouth is dry...I do drink alot of water, but have for about a year now. I dont know if Ive had it so long that I just done realize what they mean by dry mouth.

I feel short of breath sometimes too...but right where the neck meets the chest hurts...like under my or would be a mans Adam apple. I cant even touch it...I wonder if thats because it is very dry down inside my throat.

I have an appointment with an ENT at MASS EYE and EAR tomorrow at 1:00 ...hoping he can give me some clues as to whats going on with the dizziness and dryness. Dont know what kind of tests he will do, I also get really nauseous with my dizzy spells...and I tend to feel weak on one side ( always afraid of a stroke ) but all my MRIs have come back normal.

I will let you know what I find out.

Good luck with your testing on Tuesday.

Tracey

[Guest guest]

Hi ,

Boy do I feel your pain girl! Yes I do have my lymph nodes hurt on and off. It has just been part of this thing for years.

I am so sorry to hear about your dad! Why did he die of a heart attack? Was it a family trait? What is your cholestrol level like? Mine is through the roof.

I am going to have an evaluation on vestibular (inner ear) balance problems next Tuesday at the University. I feel that it is most likely an autoimmune response (inflammation) in my inner ear that is making me dizzy and off balance. I have had a few spells where I could not function at all because of the dizzyness. One time 2000 lasted only a day but I felt like there was this giant magnet and it was pulling me to the left. It was so strong I could not stand at all. The next time the spells were that severe it was last July- October, same thing happened. I could not stand because of the invisable magnet and I kept being pulled down to the left. This resulted in an episode that lasted 3 months. I could not walk with out running into things and I could not drive. They think I had a stroke during this time though. Night before last I had a very bad dizzy spell and then I had something like a seizure. My neuro doc was called and he is going to see me.

My dizzyness is on and off sometimes severe sometimes just aggraviting. You may want to ask about Vistebular Balance testing. I can't wait, I know they are going to flip me around and around till I puke.

What kinda dizzyness do you have? Are you spinning or are things spinning around you? I feel like I am on a ship in high seas. Do your ears hurt? Your head? Do you faint? I feel like I am going to faint but so far I have hung in there. It does make me sick to my stomach though.

I am so sorry you are going through all of this! I hope they can find out why you are having these spells!

{{{HUGS}}}

Sherry

Be Dead to your past, be Alive in the present and be Excited about your future! ~Sherry>From: TrixTrix1980@... >Reply- > >Subject: Re: [ ] Sjogrens syndrome with AIH- >Date: Wed, 7 Jan 2004 17:09:08 EST > >Yes..Sherry thats exactly it! > >My liver doc has for the past year said that I had lupus like syndrome. > >I did get the rash first this time...just small circles on the upper arms. >My blood is negative for lupus, I only have an elevated ANA ( slightly) SMA and >now mildly elevated C-reactive protein. > >The dizziness is really scaring me! I am afraid that it is heart related. I >have not had any heart problems so far, but my father died of a heart attack >at 34! > >My doc is out of town, had an appointment with his nurse practitioner today, >got stuck in traffic and was 20 minutes late, when I got there they told me >to go home! > >I think the worrying is making me worse. > >Thanks though, your symptoms sound so familiar?? > >What about the glands in your throat?? Mine are very sore, especially under >my jawline and in front of my ears. > >Tracey Worried about inbox overload? Get MSN Extra Storage now!