Thanks Tiff I totally hear you because have been waiting for a diagnosis for a little over two years , so rant and rave away. I have done enough googling to make your eyes buldge on these disorders but sometimes you will find some one on this forum or sarc forum who had similiar results on their CT so they chime in...chin up
Lulu,
That would be so great to have a radiologist. Trying to find data on CT results with just those terms is pretty inconclusive. I did try the another place I believed u told me before but this forum is so much more responsive. :) But thanks for input...I appreiciate it.
Twopack: Hi Mary, yeah I did finally have my meeting with specialist in Dalllas. He was great, spent a couple hours with us, made me describe every detail of my timeline. Went over all other possibllities and he even said if I had come to him intially with the brain lesions seen on first MRI and the positive LP and bilateral TN he would have diagnosed me with MS. But he said becaise my neuro waited and then did repeated MRI that showed no changes he could see that MS was harder to dx. However he said I am most likely more a slow case, and he suspects my chance of MS diagnosis in next year or two is 70 percent or higher. Right now he says we need to rule out one more mimic that was not ruled out. Sarcoid, which Quix had quessed was other possible.
So he ordered CT of chest, he said if that is negative then will repeat LP, if those oligoclonal cells are still present then for sure MS. If I don't want to repeat LP he will do serial MRI every 3-6 months and possible start a DMD.
So now of course he is on vacation till Aug 2 and had my CT of chest which did have some abnormal findings but I have to wait till he gets back...poop always bad timing. Anyways that is why I am bugging the forum cause maybe someone else will have had these similiar findings. I will keep in touch, been on hiatus to give myself a break. This hot texas summer stinks really increases the fatigue and just found out I have to work full time since they won't allow job share or go back to a perdiem position. So full time and all the pain I have from TN and spasms is depressing me more.
Take care all...Amy
See? I don't even know how to spell it.
Scarcoidosis > > > > Sarcoidosis
Does one rule out the other? I know. No fair answering with a question.
Mary
Hi again Amy! It's good to see you back here.
I wish I knew more or had an answer for you but I don't know enough about CTs or scarcoidosis to help. Lulu always has bunches of excellent on-line resources. (whispering.....you know she's got web connections right?) I hope her information can help you.
I hope this post means that you found some help at UT and have progressed to a point where the only decision is if this is MS or scarcoid? Please do share if you feel comfortable and let us know how you are doing. July 20th sounded so far away back in April. Now it will be fading in the other direction.
Mary
We have a doctor, a slew of nurses and even a physical therapist or two here who also have MS. What we need to find is a radiologist to complete our medical pool - I don't think I want to search for a shrink! LOL
I know so little about images - but I'll drop you a pm of a place to go and ask this question, ok?
be well, Lulu
Ok, I am oh so not an expert!! ( I am a nurse, so I do understand some of what I read!) I googled sarcoidosis, which sounds more like your findings than MS! However, I can be wrong!! Knowledge is our best defense! Do your research!! Look up both diseases and compare! I hope u have neither! But, prepare yourself, stay positive!! And trust me, if you read my " rant", that means a lot coming from this mad, angry, pi***d off girl!!! I do not believe in 2nd opinions! I believe in 3rd and 4th ones! This is our life!!!