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The rheumy called me back regarding MRI...need advice

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Posted 7/27/2006 7:26 PM (GMT 0)
I had wrote a earlier post.....about Spinal taps sucking and the lesions that MRI showed on there. I did what uppitycats said and I called my Rheumy and faxed over the MRI's to him...which included the one from 5 months ago and the one from last month.

 

The rheumy called me last night around 8pm (I left my phone in my purse because I never thought a dr would call so late)

His voice mail message stated " This is ----, I was calling ....A-to see how you were feeling and B--to tell you I am extremely concerned about the MRI results that you sent to me. I need to know what the neuro told you about regarding the findings on this. He said that he wanted to hear from me before friday this week to discuss the findings."

 

well, that kind of scared me! To call me at 8pm wasn't normally the thing that doctors do even though he is a awesome dr so I shouldn't probably be concerned of that...I should appreciate that he took the time to call me at all.

 

I tried calling back today but I had to leave a voicemail at his nurses line with a call back number...so now I'm in limbo

I know with the spinal test negative, I don't think that's still a issue,or could it be? The MRI stated "dmelynation is likely" and "vasculitis is also likely" like the post before. I had 1 to 2 lesions on last scan and now I have 9 lesions in 5 month period.  I wouldn't think that even MS grows probably that much in only a short time.

 

My symptoms are similiar to just about everything...for the last few months I had "burning" stinging pains in face....and upper arms. It feels similiar to a bad sunburn, but I've never heard anyone mention this in any disease or disorder. Menopause is the only thing I can find when I research it and I'm 28 so that's pretty much ruled out :)

 

Just wondering what everyone's take on this....I know I will have to hear what the dr says in the end anyway but it would useful on what ya'll have to say as well.

 

Thanks!

 

Ginger

 

Posted 7/27/2006 8:47 PM (GMT 0)
Hi Ginger,

I don't have much I can say as far as guessing about this.  MS lesions can develop that rapidly and I'm sure there are other conditions that could cause it as well.  Vasculitis is usually associated with Lupus or a rheumatological condition.  I certainly hope you hear back from the doc today.  Try not to overthink it (easier said than done, I know!)

 

Take care, let us know what you hear.  HUGS!

Posted 7/27/2006 9:43 PM (GMT 0)

I don't think I'd be overly concerned about the doctor calling you late. It may simply be that's when he calls patients, after having office visits all day.

It is quite possible for lesions to develop that quickly, though, be they from MS, or some other cause (the vasculitis can cause lesions too, I think.)

The burning sensation -- it could be one of those weird sensory things that happens with MS. My mother had lupus, another autoimmune disease, and experienced that sensation, too, so it's good you're seeing a rheumatologist who can look for other signs that might point to lupus, or something similar.

28 is pretty early for menopause.  :)  I'd probably keep trying to reach the doctor, calling again tomorrow.  Or it may be that he'll call again tonight -- keep the phone handy!  tongue

Posted 7/29/2006 1:45 AM (GMT 0)
ok ya'll thanks for responding..

I was tripping really bad yesterday!
He called me back after his work day. He said the reason he didn't call me during 8-5 hours is because he wanted to leave a little time to answer any of my questions.

He first ask me what exactly my neuro dr told me. I stated the only thing that was said was I did not have MS, and then told me to have a great day. He ask if he could have my neuro dr's name and number to contact him.....and then he went on to say

He has contacted two colleages (neuro's in the same building as he is) and the top neuro dr in austin, Tx to confirm . All have agreed that this looks very much like a very rare condition called CNS vasculitis......

He ask how willing am I to have a brain Biospy......I hesitented on this one......I Never have put much thought into this to answer quickly...but he said that is the only way they can truly diagnosis it.
He said if in fact everything leads them to believe it is CNS then it is treated by Chemo and high doses of steriods.

He told me the best way to get a full-work up would be to go to the "mayo" clinic.......He then said since I was so young that he understood that's not always affordable for many people and suggested two teaching hospitals...one in dallas and one in houston. He is sending me a letter regarding the suspected diagnosis by him and the other neuro doctors.

I'm actually not freaked out as everyone THINKS I should be since this is a very serious condition....I guess only because I knew I've been feeling so bad lately and it's progressively getting worse.

However I am scared about the chemo treatment for whatever reason..... I've heard horrible stories about this, and even though this is completely different from chemo in cancer I think, but my grandpa took chemo for several months and he looked so weak and so deathly ill. He told us that if he would of know all that was involved with this he would of forwent the chemo and let things go naturally. He was 75 though so he knew he would live to much longer, I am 28 with two kids so I have to do what I have to do to be around for them.....

Has anyone here took chemo treatments for MS or lupus??
Posted 7/29/2006 2:54 AM (GMT 0)
Hi Ginger,

I have lupus and MS and I'm supposed to start Imuran for the progressive MS, but my rheumy told me they use it alot in Lupus and that I should take it.  I don't know what kind of chemo they will use, but there are drugs to help with side effects.  I wish you much luck and hope in the coming weeks.  Take good care and let us know how it goes.  I know you'll be very releived to know what you're dealing with. :-)

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