hello everyone

[daylight]

It's been awhile since I've posted . My hand and eyes aren't working to good these days. Since I was my last post
I've got on SSDI and have had some insurance troubles. So I now have a new RD that I just had my fist visit with last Tuesday. This Rd is sure that I have more than just RA,sjorgens,Renaud's ,ect....... . He says that my extreme muscle weakness,rashing,vision loss it's the RA . Which I knew. He's not happy that I'm allergic to the RA meds and that my lungs aren't good . I have COPD from chronic Brochitis. So now this RD is say that he doesn't know what my diagnoses is.  He just means that he can't give me a full diagnoses. Anyways I ended up giving 9 vial's of blood and doing another xray of my feet and hands. He'd mentioned that he thought that I might have a form of Muscular dystrophy .
I guessing that he means polymyositis/dermamyositis.
But the test should tells us more (I hope). I'm getting really weak for the heat . And the rashes are mostly on my hands,feet,calves,knees,scalp . I'm getting sores (or red spots) that come out on my face . I wake up with them but by the evening most the time they are going . I still have hair but I've lost more than I'd like. Probably because I stop take my folic acid for awhile. I know dumb move.   
Well this doctor really was talking like my main problem may be Lupus and not the RA . Makes since to me since my Ana was 1160 hemogenous pattern . But at the time my old RD diagnosed me with the RA my other lupus bloodwork came out negative.
You can probably tell that this back and forth thing with the diagnosing process is driving me batty. Oh they even are going to send me back to a neurologist for even more testing. I'll probably need the number of a good shrink after all this is done.

[Adminஐﻬ]

It's been awhile since I've posted . My hand and eyes aren't working to good these days. Since I was my last post
I've got on SSDI and have had some insurance troubles. So I now have a new RD that I just had my fist visit with last Tuesday. This Rd is sure that I have more than just RA,sjorgens,Renaud's ,ect....... . He says that my extreme muscle weakness,rashing,vision loss it's the RA . Which I knew. He's not happy that I'm allergic to the RA meds and that my lungs aren't good . I have COPD from chronic Brochitis. So now this RD is say that he doesn't know what my diagnoses is.  He just means that he can't give me a full diagnoses. Anyways I ended up giving 9 vial's of blood and doing another xray of my feet and hands. He'd mentioned that he thought that I might have a form of Muscular dystrophy .
I guessing that he means polymyositis/dermamyositis.
But the test should tells us more (I hope). I'm getting really weak for the heat . And the rashes are mostly on my hands,feet,calves,knees,scalp . I'm getting sores (or red spots) that come out on my face . I wake up with them but by the evening most the time they are going . I still have hair but I've lost more than I'd like. Probably because I stop take my folic acid for awhile. I know dumb move.  
Well this doctor really was talking like my main problem may be Lupus and not the RA . Makes since to me since my Ana was 1160 hemogenous pattern . But at the time my old RD diagnosed me with the RA my other lupus bloodwork came out negative.
You can probably tell that this back and forth thing with the diagnosing process is driving me batty. Oh they even are going to send me back to a neurologist for even more testing. I'll probably need the number of a good shrink after all this is done.

Hello Daylight!
I'm sorry to read all you are going through the back and forth *game* the Drs do passing us back and forth to anther Dr.

On the Nuerologist, that is who finally diagnosed my sister with Polymyositis. But he was the one who suspected it and sent her to UCSF for a muscle biopsy to  confirm it. I sure hope you don't have anything else to add to your plate as you know you have enough to deal with it.

Congrats on getting your SSDI. That is certainly always good news when one gets that as not everyone qualifies or they fall in between the cracks.
Hang in there, keep us posted on what your upcoming Dr visits say.
(Blood work results too!)
Kathy

[daylight]

Thank you Kathy for repling. My doctors appoint yesterday didn't go so well. We have to fire my GP. He doesn't understand why I'm rashing so bad because of the heat. And he's an internist. He keep on saying but your test were all normal two months ago. And I said but they weren't a year ago and don't anti body test fluctuate .He had to agree to that . He's upset because he say that I just have sero negative RA and that should be milder . I told him that even my RD said that I have more than just RA and that the RD re ran the blood work plus took more xrays . My GP was upset about this. Which made my husband and I question this doctors motives .
So after waiting over 2 hours to see the GP he send me out for more xrays (hip,pelvic ,lower spine) and a script for a cream (for the rash) an vicodin. I had told this doctor that I'm allergic to steroid but we thought that maybe a mild cream wouldn't cause problems. Well we were wrong. I used a small amount and started itching within a half  hour later but not to bad. I'm going to try it again latter today with my fingers crossed.

So now I'm just hoping that all these test will show what is going on . Still don't have a Neuro appointment . But I'm thinking that my RD is waiting on the test result before he makes the referral to the neuro. .

Well I'm off to get ready for church.

[Adminஐﻬ]

Thank you Kathy for repling. My doctors appoint yesterday didn't go so well. We have to fire my GP. He doesn't understand why I'm rashing so bad because of the heat. And he's an internist. He keep on saying but your test were all normal two months ago. And I said but they weren't a year ago and don't anti body test fluctuate .He had to agree to that . He's upset because he say that I just have sero negative RA and that should be milder . I told him that even my RD said that I have more than just RA and that the RD re ran the blood work plus took more xrays . My GP was upset about this. Which made my husband and I question this doctors motives .
So after waiting over 2 hours to see the GP he send me out for more xrays (hip,pelvic ,lower spine) and a script for a cream (for the rash) an vicodin. I had told this doctor that I'm allergic to steroid but we thought that maybe a mild cream wouldn't cause problems. Well we were wrong. I used a small amount and started itching within a half  hour later but not to bad. I'm going to try it again latter today with my fingers crossed.

So now I'm just hoping that all these test will show what is going on . Still don't have a Neuro appointment . But I'm thinking that my RD is waiting on the test result before he makes the referral to the neuro. .

Well I'm off to get ready for church.

Ah Daylight I'm sorry, I really thought things were looking good for you. Obviously this Dr is hell bent on saying no to giving you a diagnosis.
I'm sorry to hear about the creme, perhaps there is one that will help you. SOMETHING!!! I know it's discouraging till you are properly diagnosed but basically it's trial and error running the tests, getting the results matching them all up to your symptoms and having a compassionate Dr that is on top of things (that is where I went wrong for many many years).

Hang in ther, better days ahead.
Do keep us posted!
Have a wonderful Mother's Day!
Kathy