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I was told in August 2021 by the ER doctor that I might suffer from a mixed connective tissue disease. I searched on Internet about that disease and I found out about the Sharp syndrome. Anyone else is diagnosed with that disease?? It’s a very rare disease that presents symptoms of 2 or more connective tissue diseases like lupus, scleroderma, polymyositis and rheumatoid arthritis. The internist and neurologist never told me officially that my diagnosis was lupus but they told me I had a disease… read more
@GenlacoYankowski Yes, i bought myself a big agenda to write down the important symptoms each day. I just doubt the doctor will be able to take the time to read it all but at least, I have all the information at hand.
@A MyLupusTeam Member There is a debate in the litterature as if it’s really a disease of its own or if it’s only a phase before becoming official diagnosis like lupus or scleroderma. It tends to become more specific to one or another disease as the years go by but it becomes mostly lupus. That’s why the treatment at the beginning is pretty much the same as lupus. For benign cases, they treat with NSAID and Plaquenil and sometimes small doses of Prednisone. For more severe cases, they add Methotrexate or other immunosuppressive medications.
I feel like they treat me as a benign case with only Plaquenil since 2 months and Indocid that I was already taking before just when needed. They never prescribed me Prednisone even when I asked for it and even when the neurologist recommended it himself 🤦♀️. He said he couldn’t prescribe it to me because the issue was not neurologic but he has made the recommendation to the internist who decided to only start Plaquenil alone. I think that someone who has severe mobility problems with difficulty walking, climbing stairs, getting up from a chair, getting in and out from a car, washing and drying hair and dressing like me is more than a benign case in my head 🤦♀️. Maybe it’s my fault because I don’t complain enough but I never have the time to say all those things and they never ask those questions so maybe they assume I’m functioning well at home but it’s not the case 😔. They only see me in the office for like 15 minutes so 🤷♀️.
Thanks in advance 🙏 for asking your rheumatologist about that disease. Please let me know if he finds out something interesting related to it.
@A MyLupusTeam Member Me neither, I just learned it yesterday while searching for the term mixed connective tissue disease. I learn new things everyday lol 😂.
Wow, it’s pretty frustrating when the specialists all say different things 🤦♀️. It seems like they even have difficulty to diagnose and treat connective tissue diseases themselves! I feel like a ping pong ball being sent to the internist, neurologist, back to the internist and finally the real rheumatologist 🤦♀️. Everyone works in silo and don’t know what the other specialist did or what tests he asked so things get often confusing even for them…I wish they could all work together at the same time, like the patient would go for an evaluation with all the specialists there but it doesn’t work like that here 🤷♀️.
I haven't forgotten about you and asking my Rheumatoloist more about the mixed connective tissue. I been so busy playing catch up at work, etc. I haven't had the time yet. Things normally starts to slow down in March at work.
I have a better chance to get with him and ask questions. I am keeping you in my prayers. 😁❤️
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