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Undifferentiated Connective Tissue Disease
Autoimmune Diseases | Last Active: Nov 16 5:37pm | Replies (52)Comment receiving replies
I also have this diagnosis - very high ana and nothing else in that test. However, positive LAC and biopsy of 2 of my rashes diagnosed as Lupus rash. I also have some kind of mast cell issue going on etc. So the muscle spasms, extreme fatigue, not easily raising arms to wash hair - or my favorite walking up stairs are blamed on either of these diagnoses or spinal issues. My blood results for immunology are doable - but weak. I really want to find out between now and death what the heck I have. It is difficult to navigate these areas as it seems the studies are extremely controlled and limited. On top of all of this I either get an allergic reaction or an intolerance reaction to just about every drug prescribed to me. Of all things - the drugs really affect my muscles just like they were all statins. Anyone else in this blog have all of this?
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@sickofpasswordsu2 um, WHAT???!!!!??? You have lupus. If you have a biopsy of your skin showing cutaneous lupus, you have lupus. Now… it gets tricksy here because (and here is where I personally disagree as an NP with the existing thinking) there is common thinking that you EITHER have “just” cutaneous (skin) lupus or you cutaneous (skin) lupus and systemic (whole body system) lupus. You can have a positive ANA with either.
It sounds like your rheumatologist is saying you are “cutaneous lupus” but without SLE (systemic lupus). Again- I disagree with this distinction from the patient perspective BECAUSE your whole-body immune system is ALWAYS involved!!!!!!
I would much rather we talk about cutaneous lupus on a very wide spectrum- how much of the skin is involved? Does it require meds to suppress the entire immune system? Are internal organs affected? That’s a way better classification system in my mind and better reflects the lived experience.
It sounds very much to me- like you do not have your symptoms under control. I would really (and very gently) recommend you go in with your list of symptoms to your rheum and explain what your experience, how often, and how it affects your daily life. Treatment is absolutely available and your doctor doesn’t know to treat unless you are persistent in shoving your symptoms (and how it affects you) in their face.
An example: me saying to my derm- my skin feels inflamed isn’t the same as the impact the symptom has: my skin feels so inflamed that most days of the week I can’t wear a shirt for the entire work day. Basically, take the examples from your post- and try to keep a log (if you can) and bring that with you to your appointment- every day? Most days?
That much muscle pain and weakness needs to be checked out. Even if it still falls under the cutaneous lupus label- that’s the immune system attacking other areas.