Not Lymes it turns out to be Systemic Sclerosis

Posted , 2 users are following.

I am sorry for not replying to your replies to my post 3 years ago. I have been desperately depressed with the frustration living with symptoms that the medical profession looked at me with suspicion. My symptoms are as nasty today if not worse as they were then. However, I have just been diagnosed with Systemic Sclerosis, the symptoms are very similar to Lymes and I am very disappointed that I have been left to suffer all these years with such prejudices (psychosomatic as female hysteria).

I was diagnosed with Discoid Lupus (skin only) in the 80's. You would have thought the medical profession could have connected the dots and kept monitoring me. I do understand that these autoimmune disorders are hard to diagnose - but if a patient already has an autoimmune disorder surely it is likely that it has spread internally, instead, I have been made to feel like a malingerer intentional or not.

So I have gone 5 years without a diagnoses and I now wonder what irreversible damage to my body and mind has been done,

I want to thank you all for your sympathy and support to my post 3 years ago - I will keep going and will not give up.

Best of luck to you all - I know what it is like to have so many symptoms Lymes or otherwise that are looked upon with suspicion or hysteria.

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2 Replies

  • Posted

    If you do not get relief after treatment, you may consider CIRS, it is very similar to Lyme and often people are misdiagnosed with Lupus. It is an autoimmune condition with symptoms such as brain fog, skin rashes, joint pain, headaches, muscle aches, difficulty regulating body temp, stomach issues, etc. Best of Luck!

    • Posted

      Thank you for your reply my first appointment isn't until 8/8/19 to the Rheumatologist, so hopefully I will have more info at my disposal then. Limited Systemic Sclerosis meaning internal scarring has been picked up which was found in blood test earlier this month. A daunting road ahead but still remain resilient.

      Thank you again CIRS sounds very much like Lupus and Systemic Sclerosis and something worth mentioning.

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