I had my first Rheumy appointment today!

[YYC_ Mommy]

I have to admit that I was very nervous. I was hoping that the doctor would be great and be able to help me. When I arrived, they had a symptom sheet that I had to check off my symptoms. I had to go back to the desk and ask to add symptoms that I had forgotten not once but twice , I laughed and said that I should add bad memory to the list:) Luckily I had written down all my symptoms as was suggested here! so I consulted that list (when I remembered that I brought it) and added them all the second time:)

The appointment lasted for over an hour. He sat with me for about 20 minutes and discussed every one of my symptoms, my family history etc. Then he examined he and then he went over his findings with me.

He said that with my blood tests and his examine his is positive that I have an autoimmune disease besides Hashimotos, he said that Sjogren's fits but that there is such an overlap with autoimmune diseases and with my symptoms. He said he was concerned about my electrical shocking/vibrating, in fact he said that we need to find out why I am buzzing all day long. And asked if I had been to see a neurologist. He said that he wanted to start me on Plaquenil.

He is sending me for an MRI, nerve testing (he said that actual name but it escapes me) as well as a chest xray (my Mom was diagnosed with sarcodosis in July 2009 and he wants to rule that out).

Overall I feel that the appointment went really well, he seemed to really care about me. I started the Plaquenil tonight after reading some of the suggesting on here, I had it with yogurt and I will start slowly. I really hope that it helps me!

[harrigan]

Hi YYC - glad to hear that it went well and sounds like all your symptoms have been taken seriously and not just dismissed.  I didn't find the plaquenil hard to adjust to so hoping you don't have unwanted side effects and get some benefits soon.  Now that you have met your rheumy it won't seem as nerve wracking next time.  XX Ailsa

[Linda196]

Congratulations, it seems you may have won the rheumy lottery!

I hope the Plaq helps, and one thing to remember is that it is also helpful in other autoimmune diseases, and If further testing does show something like sarcoidosis, it's already being treated. I was diagnosed with Sarc in 1979, and declined treatment with Plaq, MTX or steroids (in hindsight that may have been not-so-smart). I wound up with the chronic form but my doctors tell me it's in no way because I didn't go for the big gun treatment. When I had to start taking the heavy hitting drugs for SjS, it was also effective on the sarc symptoms ,although it's often difficult to tell which is which. by the way, a chest x-ray is not definitive in DXing sarc, since there are 10% (I'm one) who have no lung involvement.

[YYC_ Mommy]

Hi YYC - glad to hear that it went well and sounds like all your symptoms have been taken seriously and not just dismissed.  I didn't find the plaquenil hard to adjust to so hoping you don't have unwanted side effects and get some benefits soon.  Now that you have met your rheumy it won't seem as nerve wracking next time.  XX Ailsa

Thanks Ailsa! I was just so happy to finally see someone and that he seemed nice.

[YYC_ Mommy]

Congratulations, it seems you may have won the rheumy lottery!

I hope the Plaq helps, and one thing to remember is that it is also helpful in other autoimmune diseases, and If further testing does show something like sarcoidosis, it's already being treated. I was diagnosed with Sarc in 1979, and declined treatment with Plaq, MTX or steroids (in hindsight that may have been not-so-smart). I wound up with the chronic form but my doctors tell me it's in no way because I didn't go for the big gun treatment. When I had to start taking the heavy hitting drugs for SjS, it was also effective on the sarc symptoms ,although it's often difficult to tell which is which. by the way, a chest x-ray is not definitive in DXing sarc, since there are 10% (I'm one) who have no lung involvement.

Thanks Linda, I think that is why is started my on Plaquenil as it is useful for many of the AI diseases. I have never "met" someone besides my Mom with sarcodosis:) I believe that she has had it for years and just never put all of her symptoms together. It was not until she started to have a droppy eye on one side that we thought she might have had a stroke. We finally took her to the ER where they ruled out a stroke and a visit and testing with a neurologists later diagnosed sacodosis. I am sorry to hear that you have the chronic kind as I know how much my Mom has suffered and she is still not better.

Thanks for letting me know about the xray not being the only way to dx'd sarcodosis, may I ask...how were you dx'd?

[inga]

My best friend has sarc.  I am glad they are proceeding to rule this out.  I hope your mom is doing OK.

[Linda196]

I was diagnosed by lymph node biopsy.

Other markers sometimes used are elevated calcium or Vitamin D levels, and elevated ACE (angiotension converting enzyme). I fall into the 25% who don't have those markers, and add that to the 10% without lung involvement, my sarcoid is considered very atypical, unfortunately the symptoms have been very typical!

[beej]

elevated Vitamin D levels??? I was told I have a severe Vitamin D deficiency!  I wonder how that fits in with the other issues I may or may not have.  Thanks for that reminder on making a list of symptoms to take in if I ever get to see a Rheumatologist!  I don't think I have brain fog, but if I do, maybe all the forgeting I thought was due to ADD is also part of the SJ symptoms.  Hmmm, you know, I ascribed most of my lack of concentration and memory issues to ADD, maybe the severe ADD I thought flared up with stress was really from another source!  Oh to figure this out and figure out how to deal with all this.