Frustrated

[amberbz]

Hi I have not been diagnosed. Does anyone have breathing issues. Multiple chemical sensitivity or vocal cord dysfunction. I have chronic pain. Migraines IBS along with other symptoms. My Ana has gone both negatives and positives not high positives. My sed rate has been quite high 110 today as well as CRPs in the 30s to 40s. I do not have the sun sensitivity. I’m not sure if I have a butterfly rash or rocacia. I have been getting worse over the years. Does anyone else have these?

[TM1970]

Hi, it’s an awful time for you. Most of us on here have had the same experience in waiting to be diagnosed. All I can suggest is keeping a note of your symptoms and take pictures of any rashes to present to your rheumatologist. I wish you the best of luck. T

[amberbz]

Thank u I appreciate that

[Nat61]

I'm so sorry to hear about the horrible problems you're having. I can certainly relate to the chemical sensitivity. The smell of clorox actually was what originally brought on my Lupus symptoms. My Lupus attacked my central nervous system. I would also have these attacks of severe pain in my head and it would go through my chest to my back if I smelled paint, polish remover or any strong chemical smell. I even went to ER a few times with this. Hang in there. Things will get better after diagnosis and treatment. My Lupus was severe even though my ANA was low positive, and my malar rash (butterfly) was very light.

[amberbz]

Thank u! I have not met anyone or even talked to anyone else with MCS. I will continue to see specialists until they figure me out.

[Cas70]

I was diagnosed with Discoid Lupus and Sjogren’s Syndrome. Over 4 years my voice has become more and more strained. I am super sensitive to chemicals now. My nose is so dry I suffer with breathing problems and it seems to be gaining on me. I can’t talk without having a drink nearby and even then my vocal chords strain and I have to stop or I start coughing. If I don’t take my herbal medicine along with my Hydroxychloroquine and steroids I develop a dreadful continues cough. I am going to ask my Consultant to refer me on when I see her but that won’t be until January! I can only wish you luck.

[amberbz]

Thank you. I wish you luck as well. I have found that prednisone higher does make me feel better. I know that can not be a long term fix. They will not try any lupus meds until I get a diagnosis