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froggy

Skin Questions, and Just need some support...

22 posts in this topic

Hi Froggy

 

I'm so late on this thread but also want to wish you good luck with your appointment on the 12th. I can't wait to hear what they say and hope you do tell all. Sounds like a little mixed bag going on there that needs sorting to me as well.

 

You likely already know but if you don't, fibro pain is contained all in the muscles. Joint pain is not a fibro symptom. Not sure if you experience both or not.


Sending good wishes your way!

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***Craig,yes you're correct, methotrexate isn't "right" for Fibromyalgia. My symptoms, up until the past two months, were extreme pain, itching and burning. The only outward signs of any autoimmune disease(s) were my hands and feet turning bright blue/purple and the soles of my feet turning bright red. I did have dry eyes and mouth, but my first rheumatologist chalked it up to having had a full hysterectomy (surgical menopause). I would, however, have weird vasculitis type things happening. For instance, my hand would swell like a balloon, and turn all manner of colors, and by the time I would get a camera, it would be gone! An allergist told me that she thinks this was my body adjusting having had two blood transfusions after my hysterectomy (never mind that it was almost a year after the fact). She did try Plaquenil, but was unwilling to try methotrexate because it is such a strong drug to use, without a diagnoses , and negative labs, save for a slightly positive ANA.

 

I finally left the first rheumatologist because she said that since all of my blood work was negative/normal, and I had no manifestations of disease, she thought that it was an extreme case of fibromyalgia (again, even though I "flunked" the Fibromyalgia test). I was in such agony, and the only thing that made me feel half way decent was a higher dose of prednisone. I went to see my primary care doctor who put me on the prednisone (because I begged and was in an complete emotional melt down) until I saw the new rheumatologist. By my second visit to the new rheumatologist, my parotid glands had begun swelling. He thought Sjogren's even before this. He was desperate to get me off of the prednisone, and felt that the methotrexate is much more benign of a drug than prednisone. Since the Plaquenil failed, he tried to wean me off of the prednisone before I began the methotrexate, and I couldn't get off. That's when he sent me to pain management.

 

Pain management diagnosed Fibromyalgia immediately, despite my again failing the test (I don't have increased pain in ONE of the pressure points). He began me on Savella, and at that point I was on the methotrexate a few weeks. Fast forward to two months ago, and I began with the hives/rashes, vasculitis, I mentioned above. Parotid glands are always swollen (may have a procedure done soon, that irrigates the glands and it's supposed to work in 88% of the people). My rheumatologist is sending me for all manner of testing and everything comes back normal. I am off of the prednisone, and this seems to be the only thing they care about. In the mean time, I get new symptoms every day. I have not had any blood work done since January, save for liver function and the vitamin D deficiency. Liver function has to be done every two months on methotrexate. My pain management doctor wants me off of the methotrexate, and the rheumatologist wanted me off of the Savella. I am off of the Savella at this point. As you said, this visit should clear things up.

 

 

***Hey Chopper! Thank you! I'm going to see Dr. Medsger as well!! Are you from the area, or do you have to travel very far? I feel so blessed to live so close! I still can't believe he answered the phone!! How often does that happen? :) I will let you know all of the details after my visit. What day in September are you going? I hope we both have a positive experience!

 

*** Question If a person is positive for scleroderma, are they born that way, or can it change? I wonder if I didn't show a positive, or slightly positive about 20 years ago when I had surgery on my hand. I won't get into the story, but the short of it is, the surgeon did blood work and said that I had Raynaud's and "Doesn't look like you have anything to worry about right now." He then gave me the business card of a rheumatologist here and said that if things got worse, to go see him. Now even the Raynaud's bloodwork (or what ever they use to test you for it) comes back normal. What's weird is that I had my first Raynaud's "attack" yesterday. I've always had purple and blue hands and feet, that would turn bright red after hitting hot water. So much so, that people would always ask me what was wrong with my hands! With that said, I never had a full on "attack", and quite frankly, I never understood why it was described that way, until yesterday.

 

My hands and feet would always change colors and hurt, but it was always due to the temperature. I had some dental work done yesterday, and my finger tips slowly became numb in the chair. Next thing I knew, I was driving home with completely numb fingers and it was going into my hands. The hands were sheet white (that never happened before) and the tips looked "pruny" like I was in a bath for a long time. So I'm wondering, did I always have Raynaud's or just bad circulation, and now it's Raynaud's? I was able to nurse my first three children, but when the twins came ( a little over two years ago), I could only do it for a few months. The pain was excruciating. I google searched my symptoms and saw that Raynaud's could cause what was going on. It definitely was this condition. So why did this not happen for the first 3, unless something changed? I don't know, but the doctors are always confused when I tell them that I always had Raynaud's, because they say it is very rare for it to suddenly get worse when you've had it your entire life.

 

Anyway, thanks for reading another one of my books! Peace and blessings, Andrea

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Hi Andrea,

 

I sure do hope the scleroderma expert is able to sort some things out for you, as your situation sounds quite confusing! I don't think I've ever heard of anyone being diagnosed with fibromyalgia even though they flunked the entire tender point exam so it does make you think something is haywire, doesn't it? Sjogren's can raise all sorts of havoc, just like scleroderma. Maybe they will be able to run some tests or biopsies that help sort things out. It all gets even more complicated when you factor in possible side effects from the medications you are on.

 

Here are some warm hugs to help you as you wait for more input and answers from the experts.

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello again. Just wanted to follow up with you all about my visit with Dr. Medsger. I know that you all have great things to say about him, but I guess I just need to add my rave reviews as well. :) Perhaps someone will read this and it will give them the extra push to see him.

 

His office called me four times to ask me questions about my records (prior to my visit), saying that Dr. Medsger was reviewing such and such and had this particular question. That, in and of itself, was so comforting. Until this visit, I had come to the point where I completely resented filling out all of those history packets and such. No one ever read them!

 

I was at his office for over two hours, not waiting more than five minutes for anything. He spent a solid hour and a half with me!

 

The "skinny" is: no scleroderma, but definitely Sjogren's. He was honest enough to say that he had no idea what the bumps and such are on my hands. I was encouraged for several reasons:

 

1) He is the first doctor to answer and explain why prednisone helps me so much. He explained that I obviously have inflammation around (or in?) my nerves, despite negative blood tests for inflammation. He based this conclusion on the fact that, upon his physical examination, he found that I have carpal tunnel in both wrists. This is inflammation, and it makes sense that the majority of my pain is from this kind of inflammation. Again, despite numerous nerve testing. He said that with Sjogren's and other diseases that can attack your nerves, it's very easy to get negative tests because you can biopsy or test nerves in the wrong place so easily. Makes so much sense!

 

2) He's writing letters to all of my doctors, and will tell them his findings, as well as his recommended treatment... Which happens to differ from theirs in that he thinks I need to be on prednisone! A low dose of that and then Plaquenil. He said that three months on that is not near enough, and he doesn't think I need to be on Methotrexate.

 

3) He told me that, if my doctors were unwilling to go with his recommendations, he would be happy to set me up with a Sjogren's specialist within his practice.

 

Again, he was very forthright in telling me not to very discouraged about the low dose of prednisone not making me feel better. His estimation is nine to ten months on both the prednisone and plaquenil before I feel a change. But this is treatment, not a big bandage made of methotrexate and mega pain medicine!! This gives me hope that, contrary to my pain management doctor, I might not have to be in pain management for the rest of my life!

 

This was another entirely too long post, but I needed to write it because I owe a HUGE thanks to you all! I never would have considered seeing Dr. Medsger if it wasn't for all of you! THANK YOU! THANK YOU! THANK YOU!

 

Peace and blessings,

 

~ Andrea

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Hi Andrea,

 

I'm so pleased to hear that you've had such an excellent appointment with Dr. Medsger; he sounds like an absolute star!! :emoticon-congratulations:

 

At least now you can have confidence that you are having treatment which hopefully will make quite a difference to the way you're feeling.

 

Here's another round of the Sclero Happy Dance for you! :emoticons-line-dance:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Yay Andrea! I'm glad you wrote so much because it's my understanding I get to see him on 9/22 along with Dr. Peoples who is studying under him. My GI doctor in Erie told me he IS the GURU on scleroderma. I saw her at the Lupus center (because that's what I thought I had) and she is now full time under Dr. Medsger and took me with her. How exciting too that there's a Sjogren's specialist there that he'll refer you to. I get dry eyes alot, not so much dry mouth. So I think I may have a little overlap. Take care and great to hear you had a positive experience!

 

Chopper :emoticons-line-dance:


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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This is the kind of thing that really proves the value of our forums. I'm so happy for you, Andrea. This is great news.

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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