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#1 froggy

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Posted 01 August 2011 - 08:29 PM

Hi Everyone. It's been so long since I posted last. Don't know if anyone remembers me. I've been so sick, and haven't had the energy to post anything. Since I posted last, I changed rheumatoligists, and almost immediately began showing symptoms of Sjogren's Syndrome. My parotid glands are always swollen, dry mouth, sores, dry eyes, unexplained rashes... the works. I was sent to pain management, and despite my begging for prednisone (the only thing that helps me to function), the doctor will only prescribe me more REALLY strong pain medication. I'm on methotrexate as well, and I do think that has helped a bit.

Prior to any physical manifestations of disease (other than pain, and Raynaud's symptoms), all of my labs were normal (and as of January, they still were, other than low vitamin D). My new Rheumatolgist thinks that the excruciating, all over pain, is due to the Sjogren's. I also have bright red burning feet, that he thinks is from this as well. Basically he thinks all of my symptoms are due to Sjogren's. He also , at one point, looked at my nail folds and said that they were "borderline" for sclerodermna, but did/does not think that I have it.

I'm also having a lot of numbing and I'm losing control of my tongue when I speak. My rheumatolgist thought that this was from the swelling, but 3 Ear Nose and Throat doctors said that it is not. I had an MRI of my head last week, for which I'm still waiting for the results. I wonder if the technician did not see something, as she asked me (after she pulled me out of the MRI machine) what it was that I was diagnosed with, and what it did to a person. Maybe just making small talk? Does anyone know if they get back to you faster if they see something?

Question here: So during one of my rash breakouts, I took pictures of all of the rashes. I had red patches that were not raised. Then what looked to be a prickly heat, or a drug reaction, all over my body, and one large pustule on my forefinger. I saw my rheumatolgist a week after this happened, showed him photos, and he said that it was vasculitis (the pustule on my finger, not the other stuff). It has been about a month and half since then, and my fingers are covered in hard, painful lumps. They burn and itch sometimes as well. When they burn, they burn like crazy. They usually start off red (but not always, sometimes it's just painful there, and a lump appears). The first pustule I got is still there, but is a colorless lump that is not painful. Both of my forefingers are the worst, and the skin is much darker on those fingers. The skin peels continually and is very hard and calloused. It's becoming increasingly more difficult to maneuver those forefingers... It feels like they are slowly dying, and that's the only way I can describe it. Does this sound familiar to anyone? I've read about calcinosis, but the only white I think I'm seeing, is the dead skin. It does become chalky, but I've never squeezed any of these and had anything come out.

I'm sorry this is so long (always is!). I'm just so desperate to find out what is going on with me. I seriously feel as though I'm dying, and that they will not find out what is wrong with me until the autopsy. My pain management doctor is also treating me for fibromylagia, and insists that this is just a really severe case of it. He insists that the increasing pain, is part of it. That I will live with this pain (barring a miracle) for the rest of my life. I could accept that if I weren't deteriorating. Last year at this time, 1/100 of the pain medicine I'm on right now, would have made me functional... I'm just looking for someone to say "Oh, the SAME thing happened to me, and here's what..."

Thank you for reading this! Peace and blessings to you all. ~Andrea

#2 Jeannie McClelland

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Posted 01 August 2011 - 09:59 PM

Hi Andrea,

I do remember you! I'm sorry that things are getting worse for you. It all sounds pretty dreadful~

Is your new doctor a scleroderma specialist? I would definitely want to be seeing one if I were you. There are good ones in Pittsburgh and also in the Philadelphia/Baltimore area. While it's more of a trek than you'd want to make, clear across the state, you might at least consider asking for a second opinion and consult from one of the doctors there.

We have a section on Fibromyalgia which you might want to read. In my own experience, the pain is difficult to treat and I don't think strong pain medications are necessarily the right answer (been there, did that). Again it is only my personal experience, I've had the best results with Flexeril (Cyclobenzaprine), which is a muscle relaxant. You might consider asking to be referred to a pain management specialist. They can be incredibly helpful and supportive and I would really recommend taking advantage of their special skill and knowledge.

Are you still home schooling? How are the kids?

I hope things improve for you soon. Best wishes,



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#3 froggy

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Posted 01 August 2011 - 10:39 PM

Hi Jeannie! Well, you sure know how to make a girl feel special! Thank you for the fast response and for asking (and remembering!) about school! Unfortunately, it took everything in me to finish out the year this last time, and I know I can't homeschool this year. This has been so upsetting in and of itself. The good news is that we have a good cyber school available, and the boys are stoked about it.

Guess what? I live IN Pittsburgh! :) Do you think I should go, even though my blood work is negative and I haven't been diagnosed? If so, should I continue to see my current rheumatologist? I do like him very well, and he is extremely proactive in finding out what is going on with me.

I also do see a pain management doctor, he's the one who has me on all the pain medication. Should I ask for that medication? :) I see him today, and I know he will deny me the prednisone again. Every time I beg him for it, he ups my pain medication!

Thank you again Jeannie!

#4 Amanda Thorpe

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Posted 02 August 2011 - 05:24 AM

Hello Froggy

Yes, see a scleroderma expert. Even if they don't come up with anything else you will at least know everything that can be done is being done. I have a lovely friend who has gastric failure as a result of scleroderma and has just seen a gastroenterologist who is a scleroderma expert and the difference in outcome is amazing. The scleroderma expert believes that in time he can get her eating again and is changing her medications. For the first time in a long time there is real hope that she can regain a good quality of life. :emoticons-line-dance:

Take care and keep posting.
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#5 Joelf

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Posted 02 August 2011 - 06:03 AM

Hi Andrea,

I remember you as well and I'm very sorry to hear that you've been feeling so poorly.

I do agree with Jeannie and Amanda; I think it's important to see a Scleroderma specialist, even though you have a good relationship with your current rheumatologist. I actually deal with three different hospitals and find that although they're a bit slow notifying each other, they're quite happy to work together, so I would imagine that the same thing would apply with your rheumatologist and a Sclero specialist.

I've included a link to the Pittsburgh Sclero specialist that Jeannie suggested and also a link to Sjogren's Syndrome which I hope you'll find helpful and informative.

I do hope that your pain management doctor is able to offer you some relief to improve your quality of life and that you soon feel much better. :emoticons-group-hug:

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#6 froggy

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Posted 02 August 2011 - 07:03 AM

Thank you! You guys ROCK! It's amazing how much your words have lifted my spirits! I'm going to call that doctor today (thank you Joelf). I will post again tonight after the pain doctor appointment.

Hope you all have a great day!

#7 debonair susie

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Posted 02 August 2011 - 09:45 AM

Hi Andrea,

I am glad you have come back, not only for the support, but also confirmation as to how important it is to get yourself set up with a Scleroderma Specialist. I understand that you like your rheumatologist, yet there are things you mentioned that truly need attention.

I hope the best for you with getting these medical issues you are dealing with, addressed.

How great that your boys are looking forward to cyber school! However, you have given them a great "start", having home-schooled them for as long as you were able.

Please keep us posted!
Special Hugs,

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#8 Shelley Ensz

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Posted 02 August 2011 - 08:09 PM

Hi Andrea,

It's great to see you back again, but I'm sorry it's because you aren't doing so hot. Yeah, I know, understatement of the year, huh?

Anyway, about the scleroderma expert. Most scleroderma experts are rheumatologists who also treat Sjogren's, so the majority of the time you wouldn't have to have scleroderma in order to see them. But because its their area of interest, you could be in good hands with them if there are any questions at all about either having or developing scleroderma. Most of them would work as an addition to your medical team, consulting with your local rheumatologist so you could continue to see them as well. Given your particular situation, I don't see what you'd have to lose if you can find a scleroderma expert who would take your case. Just tell them up front that you have Sjogren's but want to see a doctor familiar with scleroderma as they could be reassuring if you don't have any symptoms of scleroderma plus they would also be well-versed in handling Sjogren's, in the happy event that they find you free and clear of scleroderma symptoms at this time.

Then, let the chips fall where they may. It's a very fine line between Sjogren's and scleroderma. Many of us (including me) were diagnosed with Sjogren's before we were diagnosed with scleroderma, as about 20% of the time they overlap and the Sjogren's symptoms are more specific, and thus easier to identify at first. Plus 80% of people don't have that overlap and by seeing a scleroderma expert, who knows what to look for, that could be reassuring if they find you don't fall in the scleroderma spectrum. As I see it, both ways you'll win from having more input for your healthcare.

Regarding pain management, I've been all over the road with various treatments over the years. Sometimes pain meds work best, sometimes Flexeril, massage therapy, TENS units, gentle exercise or all of the above, etc. The one and only dangerous thing to stay away from if there is ANY question of scleroderma is prednisone because it can kill off scleroderma patients faster by causing sudden kidney failure and other hazardous things. See Scleroderma and Prednisone Warnings on our main site.

As for that feeling that you're gonna croak? I may be wrong, I often am, and I'd love to hear from others who think the same or otherwise. But I have multiple autoimmune diseases, including diffuse scleroderma and Sjogren's, plus fibromyalgia. It's my personal opinion from talking to many others with and without scleroderma and with and without fibromyalgia, that it is the fibromyalgia portion that lends the biggest whollop of fatigue and malaise, that "feeling like you're going to die soon" feeling. It's a mirage, actually, which I think is caused/inspired/produced by the fibro fog and fatigue. In general, it seems to me that the people with "only" scleroderma don't seem to suffer from that feeling even half as much as those of us who have the double-whammy combo, which is why I personally -- without any medical degree whatsoever -- attribute it to the fibromyalgia. I know what you mean though; it is a weary feeling, through to the bones -- but I've felt it for years and have, for better or worse, kept on living anyway, which is why I call it a "mirage".

Here are some more warm hugs, just for you.

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Warm Hugs,

Shelley Ensz
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#9 froggy

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Posted 02 August 2011 - 08:19 PM

Hi again.

I just want to again, thank everyone for your kind words, encouragement, and for the advice... and for remembering me! ;)

Before I saw pain management today, I called the number you all have listed for the scleroderma specialist here in Pittsburgh. Guess what? He answered the call and said "Hello." I thought I had the wrong number so I apologized, repeated the number and asked him if it was the same. He told me that it was and then asked what I was looking for. Told him, and he said "Yeah, that's me, but this is my private office number." I about died, but I was happy to talk to him!

I told him what was going on, that I was very happy with my rheumatolgist, and did not have any positive blood work,and basically, that I called him because you all told me I should! :) I asked him if he thought I should come and see him, and he said "Well, I think you have a lot of questions, and a visit here may ease your mind, if nothing else." So I have an appointment next Friday the 12th!

Also went to pain management, and he told me that my back MRI (still no results to the head) showed that I have degenerative disc disease (guess not too many people over the age of 30 do not have some degeneration of the spine), but very significant disease, damage, and arthritis in my lower spine (Lumbar). This is what he had suspected, and the MRI confirmed his suspicions. That's all very interesting, however, that area, and hips (where I feel most of the lumbar pain radiating), is the least of my pain problems. I told him how bad I was feeling I think they (pain management doctors)can tell from looking at you, as to how much pain a person is in), and he is switching me to a new pain medication that will not be to my pharmacy until Friday. In his words (and he's Egyptian, so he has an awesome accent) "Now we're going to use what I call 'The Big Guns.'" He tells me that I will feel "really good" and he promises that. I'm hopeful. The last part is really cool because I told him again that "an acquaintance of mine" (A.K.A. Jeannie M. ;) )has fibromyalgia, and said that flexeril is the only thing that works for her. He immediately wrote a prescription for it!! So I took one as soon as I had the prescription filled, and I dare say it is has helped a good deal! I hope it is not psychosomatic, and I'll be crying in a couple of days, but (and again) I am hopeful.

I will say it again, YOU GUYS ROCK! Although I'm in less pain, I am VERY sleepy, so I'm going to try and turn in early tonight. Thank you. Thank you. Thank you! Peace and blessings, ~Andrea

#10 CraigR

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Posted 02 August 2011 - 11:27 PM

I agree with the others that you should see a scleroderma expert.

From your post, it seems that there are issues that need clarification. First, if you haven't been given a scleroderma diagnosis, why are you on methotrexate? Is it the Sjogren's? but that sounds recently concluded. Don't forget that many medications can cause similar symptoms, or aggravate existing Sjogren's. Second, you mention that that tests are normal. It seems very odd that inflammation indicators (ESR, CRP) would be normal, considering your symptoms. If these tests are normal, a sclero expert should explain the situation.

These diseases are very difficult to diagnose. Recently, a family member had iritis (eye inflammation), fatigue and joint pains. After a long process, ulcerative colitis was diagnosed. Another autoimmune disease.

Craig

#11 Joelf

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Posted 03 August 2011 - 01:05 AM

Oh Andrea, I'm so pleased to hear that you've had such a satisfactory outcome from both your pain management doctor and the Sclero specialist. :woohoo: I'm hoping that your appointment on the 12th goes really well (do let us know, won't you?) and am doing the Sclero Happy Dance for you!!

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#12 froggy

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Posted 03 August 2011 - 06:05 AM

Thanks Craig. Yes, I'm finding that if I google search my symptoms, several different diseases could cause my symptoms. Initially, my searches on symptoms is what brought me here.

Regarding the methotrexate, I'm on that because I could not get off of the prednisone. Because plaquenil is the most benign approach to autoimmune problems, my first rheumatologist prescribed it. When I went to the new rheumatologist, and my symptoms were beginning to appear (other than pain and Raynaud's), and because I could not get off of the prednisone, he decided that a more aggressive drug was warranted. At this point, I don't think it is working at all, but apparently it can take several months for it to kick in.

I don't understand either, why all of my blood work is negative. Perhaps it has changed in the past six months? At any rate, I'm glad to have my appointment with the scleroderma specialist next Friday.

Take care now, and thank you again,

Andrea

#13 Jeannie McClelland

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Posted 03 August 2011 - 08:48 AM

Um, everybody knows that fibromyalgia is a widespread, chronic pain (sometimes quite severe) condition that doesn't cause a change from normal blood work, don't they? No elevated sedimentation rates or c-reactive proteins.... Its diagnosis is referred to as one of exclusion (of other diseases).

A lot of people still have difficulty believing that fibromyalgia is real and can be more debilitating than many so-called more serious illnesses. Remember that until recently there weren't even blood tests to use as an indicator in diagnosing scleroderma and those blood tests, even when positive, are not sufficient in and of themselves to diagnose scleroderma. I think fibromyalgia is just waiting on its blood test and markers to be discovered.
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#14 CraigR

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Posted 03 August 2011 - 03:52 PM

The symptoms sound like something more than fibro (but who knows?), and Sjogrens should show up in ESR when so severe. Nevertheless, the methotrexate treatment doesn't sound right for fibro. A good specialist should clear up the confusion

Craig

#15 Chopper

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Posted 04 August 2011 - 12:40 PM

Andrea, how wonderful your news! This thread was a very informative read. Which doctor are you seeing? I'm going to see Dr. Medsger in September for the first time.

Chopper :VeryHappy:
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#16 Snowbird

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Posted 04 August 2011 - 03:19 PM

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!

#17 froggy

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Posted 04 August 2011 - 04:22 PM

***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

#18 Shelley Ensz

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Posted 06 August 2011 - 07:01 PM

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
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Hotline and Donations: 1-800-564-7099

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

#19 froggy

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Posted 14 August 2011 - 09:19 AM

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

#20 Joelf

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Posted 14 August 2011 - 12:53 PM

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
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