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Just Diagnosed

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#1 Donna V

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Posted 01 February 2008 - 03:06 PM

Hi, I hope I'm doing this right. I type for a living and have never really spent a lot of non-working time at the computer, so it's all new to me. I'm a 54-year-old woman just diagnosed with mixed connective tissue disease and I've been wanting to talk to somebody who'll listen! My rheumatologist doesn't seem to be paying a lot of attention. His office is always full and he's always running late. I have Raynaud's really, really badly which is why I went to him in the first place. My fingers have been swelling up like sausages when I type, which is making it harder and harder to earn a living. They lose sensation and I've developed sores that won't heal on my fingers and toes. The doctor doubled my dose of Norvasc and my chest got real tight, my hands got hot, red and incredibly itchy and I had to stop. He switched my anti-hypertensive to Diovan and gave me Nitro-Bid to apply between my fingers; I've been having the same reaction with the cream, only to a lesser degree, and I'm wondering if I could just use less and not get the reaction. I'm allergic to everything it seems; no more milk, wheat, soy or eggs, and now I'm reacting to the meds that are supposed to help me! It's been awfully hard to take care of myself since this all started; I live alone and never had children, and I don't get out much because I don't have the energy and my extremities get so numb and yet searingly painful when I go out. I'm being tested for pulmonary hypertension now; just had an echo on Wednesday and PFTs/DLCO scheduled for next Thursday. You all seem like a great group of people; how did you cope when you were first diagnosed? :wacko:

#2 Timo


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Posted 01 February 2008 - 09:58 PM

Hi Donna!!!

It sure seems like you are going through a lot at the moment. I was diagnosed with mixed connective tissue disease 5 years ago when I was 15. I have arthritis, polymoyositis and scleroderma and with that comes the raynauds. You asked how to cope at the beginning and I guess the secret is just pushing through. The first year or so was the hardest for me. I felt so alone and didn't understand anything that was happening to me or what the doctor's medications were supposed to be doing. What helped me a lot was to educate myself. As I was 15 at the time my mum helped a lot with the research but the slero website is a great place to get info.

When I was first diagnosed I had to stay home from school a lot, and I had a lot of problems with my hands and typing etc. I definately understand your frustration. I have had a lot of issues with doctors too. I have found that doctors are at first facsinated by my illness, and then lose interest. It is very annoying!!

I hope that you can find help and support here and that your texts next week go well!
Take care

#3 RememberingToSmile


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Posted 02 February 2008 - 02:23 AM

To cope....

I spent time on the internet - but in measured doses - and keep in mind you may hear the worst, not the best.

I learned to relax, block out negative reactions, and listen to music. Make myself smile.

I let myself cry some evenings.

I went to boards like this for practical advice [like chemical handwarmers for keeping hands warm, lotions, etc] and sympathy. Shout out as often as you need, especially at the beginning.

I took my doctor's advice - don't give up, and keep moving forward - don't sit still.

I read several books / workbooks on coping with Chronic Illness - because that is what this is. Slowly learning to live with the unpredictablity of it all.

I read some Biographies of others with chronic illness - or more horrible things, like Cancer of Pancreas, ALS - believe it or not it could be worse.

Don't give up, and keep moving forward - don't sit still.


#4 Peggy


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Posted 02 February 2008 - 05:58 AM

I had the same frustration you did as it took a year to finally being diagnosed. Mine started out as peripheral neuropathy where my hands and feet were tingly at first and then went dead and then this progressed up my leg. I even spent a week at Mayo Clinic in Rochester, Minnesota, and they still weren't able to find out what was wrong. The neurologist actually had the nerve to say that I would just have to "learn to live with it". I couldn't believe it!

Then I was referred to a great neurologist at the University of Minnesota whose specialty is neuorpathy and he then referred me to a rheumotologist who took one look at me and what I'd been going through the last year and was able to say "I think I'm pretty sure you have scleroderma". Then after all of the tests, and there were a lot of those, I found out I have diffuse systemic sclero that is pretty advanced; Sjogren's; Raynaud's; and mixed connective tissue disorder; terrible reflux disease; and hypothyroid. I guess you could say if there is an autoimmune disease I have it.

Yours sounds just like mine started. Are they testing you for sclero? Are they doing the blood work? Do you have a skin site where they could biopsy for the sclero. Mine was pretty advanced on my legs and arms so they took biopsies from 2 different locations and they came back as sclero.

You have to be your own best advocate and not take any guff. You have to be in control of getting the help you need medically and if you don't like the doctor you are dealing with then switch. This disease is tough enough and to not have a doctor on your side would be terrible as there is so much that goes on with it you have to have someone you can count on that cares about you and what you are going through.

You have come to a great place to vent and get great infor. Everyone here is absolutely fantastic. I am new to this too as I didn't get my diagnosis until August of 2007 and am fairly new to this website but boy have I used it.

Welcome and warm hugs from Minnesota.


#5 Donna V

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Posted 02 February 2008 - 08:35 AM

Thanks everyone, I can't tell you how good it feels just to read all of your feedback and to know that YOU UNDERSTAND!!! :D The blank stares or "Oh yeah, my fingers get cold too" kind of non-grok I was getting was maddening! I've got to tell you, I do have a few things going for me. I've been a medical transcriptionist for 35 years with a background in occupational therapy...I was 6 months away from getting my master's when my health broke down the first time, and that was nearly 15 years ago. My education has helped me in small ways, when the emotions pass and I'm able to think clearly.

I guess what has been most confusing to me is trying to separate the MCTD from the allergic reactions, since I've had so many and they've been so different. I'm going to see if I can schedule an appointment on Monday with someone who specializes in scleroderma, lupus and MCTD. That doesn't mean I really don't like the doctor I have now, because it didn't take him long to order the right tests, but I do want to find someone who will completely share those results with me, and I want to know that whoever I entrust with my care will remember things like the allergic reactions I've had.

You know, I'm feeling more optimistic already. Thanks for the perspective, Peggy, Jess and RTS; it really does help to know you aren't alone!


#6 janey


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Posted 04 February 2008 - 06:38 AM

Yes, Darlin' - it is frustrating enough to have to deal with the disease and then your added situation of not having a doctor that will listen, certainly doesn't help things. You've been given some great advice on coping and I hope you try some it. Stress will only add to the physical problems, so you need to decrease that as much as possible.

It does sound like it's time for a "second opinion". Most of us have switched doctors at one time or another and have benefited from it. If you don't like your doctor and you are not getting the help you feel you need, then it's time to see another one. Here is a link to our page on Scleroderma Specialist. You might see if there is a scleroderma center or specialist in your area. If not, then check out the rheumatologists in your area and schedule an appointment. Like you, the computer is my livelihood, so I need to be able to type. Once started on the right meds, those sausage fingers shrunk and with added exercises have pretty much straightened out and with no pain. So please pursue seeing another doctor if you're not satisfied with your current one.

When you get feedback on your recent tests, please share with the group. We'll be thinking of you.

Big Hugs,

Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#7 WestCoast1


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Posted 04 February 2008 - 06:49 AM

Hello Donna~
I am sorry to hear that your are going through so much right now! It sounds like you have recieved some good advice and support already. I just wanted to say Welcome!


#8 Sweet


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Posted 04 February 2008 - 11:24 AM

Hi Donna,

Welcome to the Sclero Forums. I'm really sorry you are so ill. I'm so very glad however that you've joined us. You have just found a group of people that truly understand what you are going through.

I'm glad to see someone gave you a link to specialists. In my opinion it sounds like you need to seek out another rheumatologist that will LISTEN.

Here is a link that may help you with coping. It is very difficult and we all deal with things differently. Continue to keep through questions out here or just vent, whatever you need.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)