The Lupus Forum banner

1 - 20 of 32 Posts

·
Administrator
Joined
·
10,179 Posts
Discussion Starter #1
Today I saw my neurologist and he is referring me to the university hospital for a consult. My present doctors want to make sure they are not missing something as my symptoms do not fit in a nice little box. The new doctor specializes in rare cases. That would definitely be me.

Going over what to expect he wanted to prepare me the doctor would probably be suggesting a brain or spinal cord biopsy. Both he and my past neuro both feel it would confirm if we are dealing with Lupus alone or with something additional. Now that is easy for them to say, it isn't there head or back. Has anyone else had this done?

Take care,
Lazylegs
 

·
Moderator
Joined
·
11,409 Posts
Hi Lazylegs,

How worrisome for you.:hug:
I can not answer your questions. I am sure someone will come along and give you information.

You are in my thoughts.
Love,
Lyn
 

·
Registered
Joined
·
314 Posts
HI lazylegs,
I was having serious anxiety over a needle biopsy of my thyroid, I can only imagine what you must be going thru. My heart goes out to you . Please keep us posted.
Sending you good thoughts,
Rosie
 

·
Registered
Joined
·
1,563 Posts
Hi Breeane

Gosh my friend i am sorry you are having to go through something like this but have faith your doctors sound like they know what they are doing and will get it figured out quickly.I have never had anything like that myself but sure hope you can get some answers from someone in here that you can relate to.Hang in there my friend and know i and many others will be thinking about you and hoping all goes well and they figure out what is going on with you.I know you have not been feeling to good for quite some time now(((((hugs))))).Talk to you soon my friend :).

Tammy
 

·
Registered
Joined
·
3,471 Posts
no sorry, have had spinal tap but not biopsy, maybe its simular, sorry proberely someone out there that as had it ,good luck anyway

take care Lin xx
 

·
Registered
Joined
·
4 Posts
Lazylegs

I had a spinal cord biopsy a couple of years ago and it was absolutely fine - it didn't hurt at all.

It took about an hour and a half, but I also had a bone biopsy taken and something else done as well, sorry can't remember exactly what (my mind goes a bit blurry with all the tests that I've had done). The worst bit for me was having to lay on my stomach for that long!

Hope that helps.

Anna
 

·
Registered
Joined
·
7,800 Posts
That sounds, um, ouch!! I mean, I presume that they have ways of making it not so but, like you I'd feel a bit odd about that.

I'm afraid I haven't a clue. I know people who have had both done but haven't spoken to them about that specifically.

:hug:
Katharine
 

·
Administrator
Joined
·
7,566 Posts
Hi Breanne

Sorry to hear that you are having to cope with that worry. It sounds like a tough call to make. I had a panic attack over my first mri scan!!!!! Sending you hugs and really hope that you have the strength to deal with it all. Let me know how you get on.

Take care

Deb
 

·
Registered
Joined
·
6,152 Posts
Dear Breanne

Sorry but I cant offer anything in the way of experience. I just wanted to say I was thinking of you. It sounds like a scary procedure and I just hope that if they decide to go ahead with it that its well justified :hugbetter: Having said that Im pretty sure they wouldnt be recommending it without good reason and it might give you answers that have eluded you so far.

Many hugs Breanne :hug:
Joan:rose:
 

·
Administrator
Joined
·
10,179 Posts
Discussion Starter #10
Thank you everyone for your support and well wishes. They are much appreciated right now. Today I am feeling calmer about the whole process having gotten over the initial shock.

Unfortunately my neurologist will not be seeing me through the next phase. He is leaving to teach in Texas. What do I do to these neurologists? They all leave the state after dealing with me :lol:.

Anna I appreciate your input about the spinal cord biopsy. It is a relief to know it wasn't painful for you. It sounds like they must numb you up pretty well before doing the procedure then.

Take care,
Lazylegs
 

·
Registered
Joined
·
1,999 Posts
I've had a lot of things done, but not this. My thoughts and prayers for you to get to the bottom of whatever is going on.

Neuro docs tend to move around a bunch. Have had a few leave here too. Not sure what is with them.
Sally
 

·
Registered
Joined
·
182 Posts
Hi Breane:hello: just wanted to say that you are in my thoughts and prayers.

Hugs & Kisses
 

·
Administrator
Joined
·
10,179 Posts
Discussion Starter #13
Thank you Sally and Orangelily for your kind thoughts.

Take care,
Lazylegs
 

·
Registered
Joined
·
642 Posts
May I add my good wishes. it must be quite a worry.

i have often read about brain biopsy for the diagnosis of CNS lupus but it doesn't seem the test is done very often.

Good luck:hug:
 

·
Registered
Joined
·
4,444 Posts
Can't answer your question either, but my mind would be racing for a while too if I was in your shoes! Hopefully they'll get you into this specialist in short order to leave you less time to wonder/think about all.

You'll definitely be in my thoughts on that day especially...
 

·
Administrator
Joined
·
10,179 Posts
Discussion Starter #17
I am in no hurry to see the doctor :lol: as you can imagine.

Thank you for all the hugs and good wishes.

Take care,
Lazylegs
 

·
Registered
Joined
·
15,684 Posts
(((((((Breanne))))))))) It can be the only way to definitively diagnose CNSV by doing a brain biopsy. In my case we avoided it and I probably wouldn't have agreed to it anyway ;) There are some people (only one or two) over on the CNSV boards who have had it done, you could ask around over there. Apparently though it's like some of the other tests, if it's positive then it's definite, if it's negative they might have got it wrong :eek:

I know they are probably looking for other things with you and I can only comment on the CNSV part of the equation.

I guess the question we pined over was would it change my treatment and the answer was no, so they considered the biopsy not necessary and they were 99.99% sure anyway in my case. Yours may be a different scenario and it may very well be a good exercise.


Whatever happens I wanted to wish you good luck.

love
Lily
 

·
Registered
Joined
·
1,640 Posts
Hi Breanne,

I want to wish you the very best, with the decision both you and your drs, decide regarding your biopsy.

I thought I may have to have one as well, at one point in time..then found out, it would do no good to take the risk..I can well understand, your worry, and concern regarding the biopsy.

Best Wishes,
Sandy
 
1 - 20 of 32 Posts
Top