NEW RHEUMY! OMG SO YOUNG!

[sandie490]

Hi Everyone!

Okay, so I saw my new rheumy today, moved to a new state, so therefore new rheumy.  Needed to anyway, old one getting stale.  Anyway,  I was told by the MS specialist that I went to, that, what I have going on, may be due to the Lupus instead of MS.

I've had Lupus now for 7 years, and I've never had the symptoms that I'm having, but I figured lets see.  I found out through this forum and some people that my ON could be caused by this.  I'm not too sure about everything else, but my new rheumy , instead of saying ' Oh yes this is definitely from the Lupus, he proceeds to tell me that, he doesn't know if I've even had Lupus all this time, and that this may have been MS all along.'

You see, my Lupus symptoms never went full blown.  I've always been on the mild side of sx.  I was on Plaquenil, and when my old rheumy last year told me the Lupus was in remission, I stopped taking the meds.  She tried to convince me that I shouldn't but I didn't listen.  Well anyway as far as I know,  the Lupus is still in remission as of 6 months ago.  

One of the sx that I get periodically, is certain parts of my body like my hands will start to burn real bad and then itch, and then I start the scratching process, and rubbing because it won't stop it actually burns between my fingers, my wrists, and also my shins.  Same places all the time.  He is also checking me for RA, and Lyme, and I will probably be going for an LP.

I think I like this Dr.  Boy, he's young.  But he seems very confident, and meticulous.  I need this kind of a Dr.  My neuro appt is next month.  
Has anyone here ever had that horrible burning and itching?  My shins get this also, but mostly hands, and then they get really swollen and red, and achy.   Boy I'll tell ya, my sister had the quickest dx of MS I ever heard about.
She started with the ON, then vertigo, and balance issues.  Went to a neuro, because of complaining of eyeball pain and blurry vision.  The neuro said ON, then started her on IV steroids, then all the test that usually accompany the dx, blood work LP, mri's.  Found 1 lesion, 1 pos band lp, 2 months later she was dx. She's also on her meds.
My sx list is rediculous, and I'm on my 4th neuro, still no dx, of anything.  I'm happy for her though, she's very active and couldn't handle any kind of complications where she would be very restricted in her busy life. So far she hasn't needed to change any of that.  She's having a little hard time with the meds,(copaxone), it leaves itchy welts.  I feel so bad, and  I start to think, OMG what if I'm looking at the same thing in my life.  She has her bad days, as everyone knows, is unavoidable, but she is sooooo positive about everything,  I'm so impressed and proud of her.  Sometimes it's hard to believe she's my baby sister, (40 yrs old), I'm 49, but I've been sick so long, I feel older.  Well, thanks for listening everyone.   Appreciate you all!   Almost forgot.  Her Dr told her to stay away from these forums, and I told her he has no right to tell you that, especially since he's not going through what you are, and living the day that you're living.
Hopefully, she'll try it out.      Love you Guys!  Hug and more Hugs!   Sandie

[ErinZoe23]

Hey sandie    I get burning itchy hands when i get a warm/hot bath and also reccently my left foot started becoming burning and itching too just twice tho... As like your sister i was diagnosed very quickly also but now my main symptoms are not connecting with MS and am being tested for other diseases.  Pay close attention to your symptoms the ones that through me off are 24/7 joint pain ( not ms) Swollen joints ( not MS)  ear ring ( can be MS)  neck/ truncal tremoring ( can be MS) and others but those are the 24/7 constant ones and my docs now wont pay attention wich is why im getting new ones.   ?   (all of them blamed on stress!)

My way of thinking of a good doctor ( the one i hope to find) will rule out every disease that mimics MS before diagnosing  

Now I'm seeking a LLMD (lyme literate medical doctor)  Infectious Disease Doctor and a Rheuma  

My one old doctor who was nice actually laughed at how quick they diagnosed me with just 2 lesions that could be from multiple diseases and having symptoms but the other 40 percent that dont fit they just ignore and she encouraged me to look deeper  she is giving me a spinal tap wich a volunteered for to see if it is positive for MS or if by chance lyme... i know lps for both of these disease are not reliable but i want to try so i can start accpeting watever this may be  

Good Luck, Stay in There, and Keep FiGHtinG

[Lulu54]

Hi Sandie,

There's nothing I can say about the Lupus.  I hope they can figure out if it is the possible MS or the Lupus causing your problems.

I can relate to the young doctor.  Almost all of my doctors are young now - I am pleased with that, because as I grow older I don't want any of them retiring on me.  :-)  My neuro could be my son, he is that young.  I like to think if they are young, I can break them in the way I want my doctor to be!  Yes, I know I'm fooling myself ......

Your sister should come and check us out - the neuro is a jerk to tell her to forget about finding support on-line.  Not everyone lives close to a place where there is an in-person support group, such as NMSS.  And even if there is one, it might not be practical to attend their meetings.  Besides, we need help more than once a month, when those type of groups typically meet.

Please encourage your sister to check us out - and she can even give her neuro our web address as well.  We would love to have some doctors check in here and see the good that patient-to-patient advocacy can accomplish.

Thanks for the hugs - hang in there for the answers.

be well,
Lulu