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I'm so confused!


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#1 Michelle2

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Posted 05 March 2008 - 10:46 AM

Help!!!!

I am now back to being almost as confused as I was in the beginning of this whole ordeal.

Let me begin by saying that I just recently went to my new dermatologist who asked me to bring in a copy of my recent blood work to my next visit. Well, that was easy since I just had it done one month prior. I walked into the office with reports in hand and he looked them over and said that everything looks good but that he doesn't think I have Scleroderma. I do have a positive ANA but tested negative for scleroderma. He told me that he thinks that I have a mixed connective tissue disease. Now this is the second dermatologist that's told me that. My rheumatologist said that he believes that I have limited Scleroderma and is in the process of getting a referral to UCLA to the Scleroderma Specialist. I am also in the process to get a lung test, lung x-ray, barium swallow test so that we have a baseline to start from and to make sure that I don't have anything else going on. So far, I only have involvements in my hands. The skin is very tight and thick and my fingers are quite swollen. The dermatologist gave me Cortisone shots the last two times I was there and actually I have noticed a change in my hands. I can really see and feel the difference with the cortisone. I've also been on Methotrexate for a little over a month and haven't noticed any benefit from this. Does it take a few months to see any changes from this drug? Sometimes I feel like I am right back to square one. Why is this so hard to figure out?? :huh:

Thanks for your help!
Take care and stay warm,

Michelle

#2 Kamlesh

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Posted 05 March 2008 - 12:17 PM

Michelle,

Scleroderma is VERY difficult to diagnose. It took them over 5 years for me to diagnose. Recently, there was a program on Discovery channel; it took the patient three years.

I am sorry you have a scleroderma, having said that you have wonderful friends here to support you. I had all the tests negative for scleroderma (except positive ANA), but based on the symptoms I was diagnosed Scleroderma. I took Cellcept for two years and now at the scleroderma front, I am doing OK.
Kind regards,

Kamlesh


#3 Margaret

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Posted 05 March 2008 - 02:23 PM

Hi Michelle ,

The same thing happened to Gareth when he was first diagnosed the fall of '06. The blood work was positive, he lost 20 #s, he had the esophageal dismotility, restrictive lung disease, lost his voice, and major fatigue. This lasted for 9 months till he went on the Plaquenil and now they are saying he has UCTD instead of sine sclero.

Take care,
Margaret

#4 Michelle2

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Posted 06 March 2008 - 05:40 AM

Thank you Margaret and Kamlesh, I really appreciate you input. It just seems to be much easier to deal with something when you can attach a "label" to it.

As far as the medication Methotrexate goes, does anyone have any input on it. What am I changes should I be expecting? After reading the about it and the side effects......It sounds kinda harsh. I haven't noticed anything yet.

Thanks again! ;)
Take care and stay warm,

Michelle

#5 debonair susie

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Posted 06 March 2008 - 06:49 AM

Hi Michelle,

You're absolutely right about the confusion of these diseases... I believe I can also honestly say that most of us hadn't even heard of MCTD OR Scleroderma until we were diagnosed withit, either. Right after my dignoses, I went home and was numb, thinking, "What is going on withmy body"?! To this day, there are things going on that are hard to discern, whether or not that which is a "new" thing is attributed to the Sclero... or is it "something else"?! :unsure:
At any rate, the more time we spend here, reading other's experiences... it IS helpful to know we have friends we can sound off to... and they really understand much of what we're going through!

It took 5 years for any kind of diagnosis for me... and each dr seems to have a "different idea" about all that IS going on.
I believe it just boils down to this... as long as our symptoms are treated, the "lack-of-exactis" :P , we can put up with, I'm thinkin'...IMHO... for awhile.

As for the MTX, I used it for 13 years, however my reason for its use was to control my Psoriasis. I was using it 8 years before my Sclero diagnosis and the amount I was using was insignificant, compared to the dosages others are on.
sorry I can't be of any help here.

Hope you feel some reassurance soon, in this regard.
Hugs,
Susie
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#6 Joel

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Posted 06 March 2008 - 07:38 AM

I have a significant amount of lung involvent so my doctor's have stayed away from Methotrexate. They say it can be hard on the lungs. I was on Immuran for 3-4 years and then switched to cellcept for the past 2 years which seems to have slowed the progression of the disease. I am also on Plaquenil, Norvasc, Prednisone, Lisinopril, Naproxan and pain medication. I also rotate between three different antibiotics to deal with severe bacterial overgrowth.

Joel

#7 RememberingToSmile

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Posted 06 March 2008 - 12:37 PM

I had a similar beginning to yours - eventually diffuse scleroderma and polymyositis dominated. They never have repeated the antibody testing, instead they've watched my symptoms and responded accordingly. They said MCTD with CREST components at the start, then the muscle symptoms knocked me down for a while.

Initially, I was Plaquenil, Prednisone (for muscles), and Imuran. This helped the myositis, but the sclero kept advancing. I switched from Imuran to Cellcept and it worked wonders for the rapidly advancing scleroderma. A year later the myositis flared again and they switched me to Methotrexate (up to 25 mg/week) However, sclero symptoms started to appear again, so now I am on Methotrexate (15 mg/week), Cellcept (2g/day), tapering off the prednisone and stopped plaquenil (also on norvasc, prevacid, and folic acid).

From the first symtoms (blue finger/swollen hands) to when the sclero was really out of control (burning, itching, tight skin) was 5 months, and I believe my case was very aggressive. At 16 months (before the change from Cellcept to MTX, my sclero skin symptoms/damage had mostly reversed out. The key is to catch it early.

I have talked to others who have had the same success with methotrexate (cytoxan, and others) from the start. But, as my doctor says... everyone is different.

For me, each change in cellcept and methotrexate doses - it took 6-8 weeks to see the full effect. It was dramatic for me when it finally kicked in. So many times I thought about calling the doctor to say it wasn't working, then it did....

I drink a lot of water with these medications, and so far not many side effects. When I first started the MTX, I would be tired the following two days (take it once a week) but that has passed. I've talked to others with Rheumatoid arthritis who have been on it for many years with no problems, and others from my myositis meeting who had problems with the pill form, but no trouble with the injection form.

Good Luck to you- Be patient, but vocal.

And as my doctor likes to say - don't give up, don't sit still, keep moving

-RTS

#8 mando621

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Posted 07 March 2008 - 11:46 AM

Well, that was useless. I saw the internist about my pre-op and she said in a nutshell: "if you do have scleroderma, there isn't anything we can do anyway."

In otherwords, the doctor. doesn't really think I have it just from her short exam, brief examination of my lab reports from 3 years ago, and my symptoms.

While there isn't much to be done for scleroderma, isn't there something that can be done if found early versus waiting until problems are severe?

What has to happen before someone actually gets diagnosed? Sjogren's is supposedly only diagnosed in the US with a positive lip biopsy. You can have all the symptoms and not have a positive blood test, yet you can be diagnosed in Europe just on symptoms alone.

My fingers are puffy in the morning and very shiny. Later the puffiness goes away and my fingers look like shrunken raisins. I have dry eyes, dry mouth, dry other areas, stiffness, trouble swallowing, sometimes trouble saying things, pain holding my mouth open wide for any length of time, my face is very thin and my nose seems to be thinning. I feel like my lungs are congested yet I'm perfectly "healthy". They did a chest xray today and ekg. So far everything looked fine. Do these types of tests show any problems for anyone else?

I tried to let go of this for a year now. About a year ago I read the books about sclero, and I thought it could be diffuse systemic and decided that I would ignore it since my doctors didn't think anything was wrong. I was okay much of the time, but certain problems have been getting worse. My knuckles are enlarged and getting worse. My swallowing trouble is getting worse.

I am so frustrated with doctors!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


My cat is climbing all over me since it is just about time to feed her. I guess I should go.

Mando.

#9 Sweet

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Posted 07 March 2008 - 11:57 AM

Mando,

I would get another opinion. Pick a doctor that specializes in sclero. An internist, is not who I'd see.
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#10 mando621

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Posted 07 March 2008 - 12:06 PM

I would like to. My insurance has denied a referral to a specialist in sclero. I guess I could try going to the rheumatologist in my HMO plan again. Maybe if I show him all my symptoms laid out in print he will do some more testing. Or he could try referring me to the University of Wisconsin rheumatologist. specialists.

The rheumatologist in my HMO studied in Poland. I don't know what type of training he may have received. Seems like most doctors want to just find the quickest solution.

I'm definitely getting my afternoon crash of energy. I feel tired to my bones.

I just feel like crying. I can't talk this over with my mom, she is worrying enough. I tried talking to my husband, he doesn't truly understand the medical problems.

Thanks for listening.