Welcome goliver

[jeffn]

Welcome and please post often.

[steve201]

Hey Goliver....

welcome to the zoo!!

Come on in and tell us about yerself!!
Steve

[sherion]

Hi there! Welcome to our home. Please feel free to post any time!

Sherion

[goliver]

Well I don't really know where to start. But will try. Having read much of the information on here, I realise that my convoluted story is not such a strange one after all.

In May of last year I had a mastectomy and axillary clearance for breast cancer. 3 nodes involved. Because on paper I appear to have a pretty comprehensive medical history, the radiation oncologist before she even met me had decided that I was not a good candidate for Radiation therapy and advised against it. My background is nursing and I wasn't going to sit back and wait to see if the cancer would return, and especially as I had had the other breast removed with successful radiation for the same thing 13 years prior. I asked for a face to face consultation with her and spelled it out pretty clearly that as I saw it I had two options, the risk of dying a slow death from cancer or the very negligible risk that in 15 or 20 years time I may have heart damage issues. (I will soon be 65 for goodness sake) My choice was to take the heart issues options thank you very much. She wasn't happy and then pointed out that I had Raynauds, (I swear I was born with it, it is mild, but I do feel the cold terribly. Although I have had the general Raynauds attacks from time to time, they are few and far between and I have never sought medical treatment because of it. She insisted on being checked for Auto Immune disorders. You could have knocked me over with a feather when the ANA and Rheumatoid factors were both positive. I was duly despatched to a Rheumatologist who diagnosed me as having mild CREST syndrome. There was good and bad in that. I had to find another oncolgist to give me radiation treatment because she refused even though the Rheumatologist rang her to say there was negligible risk in my case. The good thing is that for the first time in my life I can pull together all my health issues under one label.

I am scheduled for a full Scleroderma assessment on 6th April when I return to New Zealand. I am currently in Vancouver WA visiting with my daughter who has just had a baby.

I would like to know how mild is mild as far as Scleroderma goes.

I have had ongoing and deteriorating bowel issues my entire life. Since I was 35 years old I have been bothered with very embarassing incontinence, gradually getting more and more of a problem. Gastro has no idea, colonoscopies give no clues (maybe he doesn't know what the clues are).

I have had ongoing and deteriorating bladder issues resulting also in incontinence. Finally found a Urologist who was prepared to have a look. I have photos of cysts related to severe interstitial cystitis, and photos of the top of my bladder with contracted muscle fibres. Had botox injections into the muscles with fantastic results, but of course it doesn't last.

I have spent weeks at a time in hospital on IV antibiotics for respiratory infections and finally discovered I have severe reflux.

Have woken with swollen face feet and hands for years. Doc says he has no idea. My fingernails are pretty awful corrugatted, thin and although not scooped are now pretty flat.

I get dreadful headaches and my scalp is so taught that my hairdresser has often told me I need to relax more... My hair is now thinning. People are commenting on how young/well I look, but I suspect I have the beginnings of a free face lift courtesy of my new found friend.

In the mid 1990's I was diagnosed with Post Polio syndrome (had it when I was 9 years old) because every muscle in my body ached and I became so weak that sometimes I would stand up from sitting and fall over because my legs wouldn't work so well. Both arms and legs felt like they were made of lead and there was just no strength in them. Used a walking stick for a while because my balance was not that good. It did gradually improve until I had minimal stiffness and pain and I was able to resume normal life mostly.

I began complaining of excessive fatigue about 18 months ago. Again Dr didn't know..... then followng my cancer adventure I have found that the generallised pain, weakness and stiffness is returning. Worryingly I've also begun to have some difficulty not with swallowing but with food being very slow to go down and sometimes the feeling of a lump.

I've had a couple of small calcinosis lumps removed from a finger, (years ago) and have small patches of tangelectasia scattered around.

Echo cardiogram showed my heart is in good order, and my kidneys appear also to be holding their own at the moment.

So the question I have is what is mild? I suspect I have been developing this since early childhood. Is this possible?

I'm pretty miffed that my mother was diagnosed with Scleroderma shortly before her death in 1989. I suspected I was heading down the same road, but was rubbished by any Dr I asked the question of. Can't tell you how many times I've been offered antidepressants, and been sent for psychiatric assessment. It seemed to me that if there was no obvious answer to my complaints then it was all in my head.

I'm pleased to have possibly found a reason, but have yet to come to terms with what it all means.

[nhnancy]

Hello goliver, WOW!!

It's not unlike many of us with SD. I was told I was depressed and my tests for SD came back negative! (Obviously a false negative)
I too felt better emotionally once I found out, then was the task of finding a doctor that believed he could help!
If you can find someone that specializes in SD.
Keep ding research, find whatever makes you feel better.
I am sorry you are dealing with so much...you are one strong lady!
Nancy~

[Melanie]

Welcome, Goliver. Sounds like you've had your fair share of things to deal with already - and then the Scleroderma diagnosis to boot! Hopefully you will find out in April exactly what type of SD that you have and that will at least give you some idea of how mild it is, or what to expect later on. It sounds as though it may already be affecting your esophagus to some degree. The big thing is if it has gotten into your lungs. Duke Medical Center put me on blood pressure medicines in order to keep it out of my kidneys, and so far, that has worked. I take 2.5 mg of lisinopril daily for that. My scalp is really tight, and my hair has thinned as well. I am currently taking monthly Cytoxan treatments, but haven't lost hair due to that. My hair started thinning even before my SD diagnosis. Like you, my hands and feet were swelling long before anyone could figure out why. It was frustrating going from doctor to doctor searching for answers and none of them knowing what was wrong. I, too, felt like they thought it was all in my head. I have been having some bowel problems similar to yours for the past 8 or 9 months. Everything looked okay on the colonoscopy, however. I know it's related to the SD, but no doctor has offered an explanation.

I wish you luck and pray that your case is indeed mild and not diffuse. Keep posting, as it is always good to hear what others have found out about in dealing with SD.

[steve201]

Welcome to the zoo....sounds like you have been thru the ringer....the good news is that your still vertical....the other good news is that your finding out what is wrong......
So Sorry to read about your missadventures....but there is treatment for this aweful disease....
alot of us have been treated with cytoxan/prednisone/AP....personally I wasn't expected to live 6 mos from the time I was dx'd....that was almost 11 yrs ago......I'm still working...still vertical..and for the first time my doc has used the "R" word...(remission)...so...it is possible to recover...
from your description (and I'm no doc by any stretch of the imagination)...sounds like systemic.....internal involvement in the digestrive track is part of it.....the treatment is rather strong...cytoxan or methotrexate....prednisone....and for those adventurist type docs...minocycline....or for me I had to switch to tetracycline.....
also needed is a total change of diet.........change of attitude....etc....
please let us know what the doc says ....we'll keep you in our prayers and keep comin here.....at least check out the joke section....have a laugh....

Steve

[Cubby]

Hii!!!!! Yes, back when I was doing the intial testing, my ANA was ZERO!!! That's why all the doctors kept giving me the wrong diagnosis. Finally, found the right doctor and now I am pretty much in remission. But, to answer, your question, I don't really think there is "mild" scleroderma, other than what they call LIMITED SCLERODERMA which is usually just to the hands (if my memory serves me). Sometimes, Limited can go away on it's own, but it can also turn into systemic. So that is what I mean when I say I am not sure there is "mild" scleroderma. Anyway, when you go see the doctor, they should be able to tell you what kind you have.

I am another one on here who is on the AP therapy (Minocin) and I also do Photopheresis.

I think I got an e-mail from you, but in case that was not you, here it is again: [e-mail].

Anyway, we are very glad you are here and I am looking forward to you getting your diagnosis so that you can start a treatment that will reverse this disease.

By the way, you mentioned your mother. My mother passed away in 2001. It was not until I got Scleroderma that I realized I had all the same symptoms that she had for years. I believe she had scleroderma, but did not have hard skin. She was never diagnosed but I am just so sure of it. I know what you mean about being angry that she was not diagnosed until too late.

Best of luck to you and welcome to our board! Hope to hear your doctor results.