back from neuro, closer to diagnosis of something?

Status
Not open for further replies.

jennibf

Distinguished member
Joined
Oct 5, 2008
Messages
164
Country
US
State
AL
City
Centreville
I have a spot on my brain stem that he thinks could be causing all of my symptoms, so tomorrow is a brain MRI but this time with contrast.

However, he wants me to go to UAB as planned to meet with the big mac daddy of EMG/NCVs. In the meantime he is trying to rule out adult onset SMA, Primary lateral sclerosis (in the same fam as ALS/Lou Gehrigs and alzheimers).

Edited to add that my husband now officially thinks I am insane to be relieved that right now they are leaning toward a brain tumor more than ALS! However, I just had no idea that something in my brain could affect my muscles so much? Wright? help? again? ;)
 
Last edited:

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Jen,

Good luck tomorrow!
 

clewbcg

Active member
Joined
Apr 9, 2008
Messages
42
Reason
CALS
Diagnosis
09/2006
Country
US
State
Utah
City
Heber City
Good luck tomorrow. My thoughts and prayers are with you.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Good luck tomorrow! You're not the only one where it got down to hoping for a spot to show on the brain mri. Pretty convoluted, right? Was this mri of your entire brain? If so, you might want to have one of just the brain stem itself. Its such a tiny area, it will give them a better picture of what is being seen. My neuro called it a "coned down" mri, but I know that is not the actual medical terminology used to order the test.

Please let us know what you find out tomorrow. :) PS the contrast does add some time to the procedure, maybe you'd want to ask if you can have a pillow or something for under your knees to make your back feel better during it (assuming one is not offered and you feel uncomfortable). Once they start you can't move at all. (hugs)
 

jennibf

Distinguished member
Joined
Oct 5, 2008
Messages
164
Country
US
State
AL
City
Centreville
Rose, did they find a spot on yours?

I will definitely ask about the "coned down" MRI. When I checked out she said it would be an MRI w/ and w/o contrast and he just said a contrast MRI.

Thank you everyone!
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Jen,

They usually add the contrast at the end and compare the two.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
No, they didn't find anything, ~ well, other than my brain :) I had with and without contrast of entire brain, and then a later session was just without contrast of the brain stem. At that point I was actually hoping for something, which is completely irrational, and obviously wouldn't have been happy if something had turned up.

What I remember most about the contrast session was being miserable having to lay there so still for a quite a while because my back hurt. I mentioned this in my post because you don't need any more stress if it can be avoided. When they started it up, I had no idea it was going to take so long or I'd have said something to the techs at the time about how uncomfortable I was. The dye they use is kinder than contrast dye used for ct scans etc. I am allergic to iodine dye, and was still a little apprehensive about it, but it was all good, no weird sensations from it, although I think my arm got either cold or hot where it was going in at. (My memory is good, but its short LOL)

I know you're so wanting some answers, but I do remember others that have posted on here where tiny tumors have been found during these tests, that were not deemed to be causing the problems, but the location was not in the brain stem for them.

I think it would be good for you to ask about the brain stem mri, I wish to goodness I could remember the exact terminilogy, my doctor said it only once, and every other time referred to it as just "coned down".

Keep your chin up, you've got lots of people pulling for you!
 

jennibf

Distinguished member
Joined
Oct 5, 2008
Messages
164
Country
US
State
AL
City
Centreville
I will ask for the brain stem mri, Rose. You are so sweet!

I have been thinking that I should have posted:

good news/bad news

The good news is I have something on my brain stem.

The bad news is I have something on my brain stem.

I could tell he was still somewhat confused, talking about PLS, SMA, and more but he is a WONDERFUL doctor and is great at communicating his thoughts and reassuring us w/o making us feel like overly anxious patients.
 

L4dybugg

Distinguished member
Joined
Sep 4, 2008
Messages
148
Country
US
State
TN
City
Knoxville
Will be keeping you in prayer. I hope that you get good news.

Hugs Lori
 

lovelily

Distinguished member
Joined
Nov 27, 2007
Messages
390
Country
US
State
NJ
City
Northern
Hello Jen...I will keep you in my prayers tomorrow, for the best possible scenario!
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Jenni,

Well, you're another step closer to an answer and that is always good to know. Let's hope the MRI tells all!

Zaphoon
 

KANSASTOM

Distinguished member
Joined
Jul 2, 2008
Messages
165
Reason
Learn about ALS
Country
US
State
ks
City
wichita
Jennibf, I hope you don't mind me asking, but I was wondering what the results of your EMG was?
 

jennibf

Distinguished member
Joined
Oct 5, 2008
Messages
164
Country
US
State
AL
City
Centreville
Tom,

He said the EMG was clean except for one spot on my left leg? That is the leg that is now weak at the end of each day. It's my right leg that is now experiencing the most fasciculations.

However, he said he remains troubled by how intensely brisk my reflexes are and thinks there is something going on with my upper motor neurons. One of the blood tests checks for muscular dystrophy I believe...BUN Creatine.

He did, however, say that he wants me to go to UAB and see the EMG specialist for an EMG/nerve test there. He studied under the guy I am scheduled to see in December.

jennifer
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
My MRI showed a lesion on my brain It tuned out they dont know what it is maybe a small strokE but has nothing to do with my ALS because of where it is Ganglia Basal area whatever that means


Good Luck
Pat
 
Status
Not open for further replies.
Top