Hi Grace,
I was diagnosed last week, and am also on Long Island. I know I'm answering a very old post, but I wonder if you have been able to find any support groups, or any more info on this disease. I am seeing a top rheumatologist at Hospital for Special Surgery in NY, and she assured me that this is not a fatal disease... she is recommending therapy with a drug called Plaquenil to manage symptoms. Have you taken this? Hope you are feeling better. - Nina
I was diagnosed last week, and am also on Long Island. I know I'm answering a very old post, but I wonder if you have been able to find any support groups, or any more info on this disease. I am seeing a top rheumatologist at Hospital for Special Surgery in NY, and she assured me that this is not a fatal disease... she is recommending therapy with a drug called Plaquenil to manage symptoms. Have you taken this? Hope you are feeling better. - Nina
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Hi Sandra, how are you? Hope all is well with you.I was diagnosed with MCTD just this week. I understand that our illness is rare, so it would be a big help to talk to someone who understands the disease and might be of help how to cope with it...thank you and God bless you.
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Its been a year since you posted this Sandra i am not sure if you will even get this. My wife was diagnosed this disorder today she is very upset about it obviously... here is my email maybe i can have her reach out to you about it?
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Unfortunately she's not overreacting. I was given disability the 1st time I tried for it which is a rare event. I was accepted because I have "three comorbidities" which means three different fatal aspects of the disease. I've had it for more that ten years and I'm feeling really rough. The pain and fatigue is getting worse too. I avoid gluten, eggs, soy, corn and red meat which helps a great deal. What's left to eat right? I am 65 and ready to die. My husband is openly hostile towards me as I am a "burden." It's all too much.
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I have had mctd for 13 years. I to have raynauds. It is now affecting my lungs, esophagus ,stomach , i have depresstion anxiety i could go on and on. I understand. Take care of yourself.
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Hi this is almost scary. I have most of the same conditions you have. I'm 57 and about to retire. Thinking after reading your post I better keep my health insurance & not just use the VA.
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Hi I'm sandy p I have the same diagnosis sss.lol that you have. Raynaud s so bad that the last year my finger tips self amputated. Just have one finger not effective. Still like to know prognosis. One doc said your screwed.
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I understand what u are going through. I am now 38.. Just now finally got my diagnosis after knowing what was wrong all these years. I started with Raynaud's at 13,then diffuse naggy joint and muscle pain, fatigue, poor sleep... Ect.. I continued my life as usual and treated myself with alot of NSAIDS, wore 2 or 3 pairs of gloves and kept moving on. It was not until 3 months ago I decided to take things into my own hands and being a nurse practitioner I got a full rheumatoid work up. I have developed a good working relationship with a rheumatologist who I finally broke down about all my issues and lab results and he wanted to see me immediately. So now, I have the diagnosis of MCTD and RA and have began treatment. It's a long road and it's a tough one to travel... Life expectancies vary but a lot of it is in how well you care for your body also and keep moving! I cant stress that enough! On those bad days move some! Don't let this disease take you over!
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I have had MCTD now for near on 14 years, I am active in playing wheelchair basketball and try to keep active as this seems to help.
The hardest part is getting to know your body as you become used of painkillers and drugs hence now starting Anti TNF drugs, have had lots of problems but dealt with them, just sometimes get very tired and depressed when told to rest and drugs don't work , if it is true about this 10 year life span sometimes think , well lead an active life , ok maybe it is that time.
Cheers A
The hardest part is getting to know your body as you become used of painkillers and drugs hence now starting Anti TNF drugs, have had lots of problems but dealt with them, just sometimes get very tired and depressed when told to rest and drugs don't work , if it is true about this 10 year life span sometimes think , well lead an active life , ok maybe it is that time.
Cheers A
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I have a young child that has been diagnosed. She has horrible pain and is on methotrexate and plaquenil. What treatment did you receive. I haven't found many people that have been diagnosed at such a young age. That's wonderful to hear you're doing so well. Gives me hope
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Hi Sandra,
I being treated with MCTD for the past 4 years . I was just wondering how do you take care your health with changing lifestyles for a better wellbeing. Adding on I was and still on steroids.
Nikhita
I being treated with MCTD for the past 4 years . I was just wondering how do you take care your health with changing lifestyles for a better wellbeing. Adding on I was and still on steroids.
Nikhita
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