stephthepeach
04-17-2008, 03:25 PM
Happy Thursday Everyone! Thank goodness it's almost Friday! I wanted to give everyone the results of my MRI. It's "normal".
Any of you get a result of possible MS or probable MS?
On Monday, I kept calling trying to get the results. I didn't know if I should call the neurologist (who referred me for the MRI) or my primary care physician (who referred me to the neurologist). Anyway, I finally got them from my PCP and was told the MRI was normal. I told them I wanted a copy of the results. When I went to pick the results up, I didn't get the full report but only the impression..."no mri findings to explain the clinical presentation of bilateral arm numbness" and "left maxillary sinus mucus retention cyst" (yummy!).
Part of me is relieved but honestly, part of me is really confused!!!!!!!:confused:
I've read that b/twn 90-95% of people w/ MS will have a MRI w/ bright spots. Will the neurologist see the films or will he rely on the interpretation of the doctor who made the report?
UGH! What is wrong with me????
Any of you get a result of possible MS or probable MS?
On Monday, I kept calling trying to get the results. I didn't know if I should call the neurologist (who referred me for the MRI) or my primary care physician (who referred me to the neurologist). Anyway, I finally got them from my PCP and was told the MRI was normal. I told them I wanted a copy of the results. When I went to pick the results up, I didn't get the full report but only the impression..."no mri findings to explain the clinical presentation of bilateral arm numbness" and "left maxillary sinus mucus retention cyst" (yummy!).
Part of me is relieved but honestly, part of me is really confused!!!!!!!:confused:
I've read that b/twn 90-95% of people w/ MS will have a MRI w/ bright spots. Will the neurologist see the films or will he rely on the interpretation of the doctor who made the report?
UGH! What is wrong with me????
Sponsor
hotflash
04-17-2008, 04:59 PM
Just a quick note to let you know that if you go to medical records they will only give you the paper results. You have to go to the mri or x ray department to get the films. I wish you the best of luck.
hotflash
hotflash
Bearygood
04-17-2008, 05:19 PM
steph, I've never seen the statistics you're citing but it's more likely that the phrase "at the time of diagnosis" should be added. There are a lot of people who do not present lesions initially. It's important to know that the disease activity causes the lesions. And, sometimes it takes them a while to show up. In order for a diagnosis, most specialists will go by the McDonald criteria -- look for the updated 2005 criteria. All this means though is what is necessary for most specialists to render a formal diagnosis. So while none of us can say that what you're experiencing is or is not MS, you should go have an appointment with your neurologist to follow-up. I don't know what other tests you've had done but they might want to do an LP if you haven't had one already.
Good luck and keep us posted.
Happy Thursday Everyone! Thank goodness it's almost Friday! I wanted to give everyone the results of my MRI. It's "normal".
Any of you get a result of possible MS or probable MS?
On Monday, I kept calling trying to get the results. I didn't know if I should call the neurologist (who referred me for the MRI) or my primary care physician (who referred me to the neurologist). Anyway, I finally got them from my PCP and was told the MRI was normal. I told them I wanted a copy of the results. When I went to pick the results up, I didn't get the full report but only the impression..."no mri findings to explain the clinical presentation of bilateral arm numbness" and "left maxillary sinus mucus retention cyst" (yummy!).
Part of me is relieved but honestly, part of me is really confused!!!!!!!:confused:
I've read that b/twn 90-95% of people w/ MS will have a MRI w/ bright spots. Will the neurologist see the films or will he rely on the interpretation of the doctor who made the report?
UGH! What is wrong with me????
Good luck and keep us posted.
Happy Thursday Everyone! Thank goodness it's almost Friday! I wanted to give everyone the results of my MRI. It's "normal".
Any of you get a result of possible MS or probable MS?
On Monday, I kept calling trying to get the results. I didn't know if I should call the neurologist (who referred me for the MRI) or my primary care physician (who referred me to the neurologist). Anyway, I finally got them from my PCP and was told the MRI was normal. I told them I wanted a copy of the results. When I went to pick the results up, I didn't get the full report but only the impression..."no mri findings to explain the clinical presentation of bilateral arm numbness" and "left maxillary sinus mucus retention cyst" (yummy!).
Part of me is relieved but honestly, part of me is really confused!!!!!!!:confused:
I've read that b/twn 90-95% of people w/ MS will have a MRI w/ bright spots. Will the neurologist see the films or will he rely on the interpretation of the doctor who made the report?
UGH! What is wrong with me????
teri62
04-17-2008, 10:40 PM
Hi.
I am new to this site. I have been waiting for a diagnosis since January. I had brain scan, which showed 30-40 lesions. I had an LP that came back normal. My neurologist wants to get a second opinion. If this MS specialist she refers me to agrees with my neurologists finding then I will be started on meds. I've been tested for lymes, lupus, aides, what else causes lesions? I've also had several blood tests.
I am new to this site. I have been waiting for a diagnosis since January. I had brain scan, which showed 30-40 lesions. I had an LP that came back normal. My neurologist wants to get a second opinion. If this MS specialist she refers me to agrees with my neurologists finding then I will be started on meds. I've been tested for lymes, lupus, aides, what else causes lesions? I've also had several blood tests.
tarapags1107
04-18-2008, 08:19 AM
hey steph-
i was diagnosed 2 wks ago formallly with MS and all my MRI's are normal (head, c-spine,t-spine,and l-spine).... my spinal tap was positive on 2 occasions and I've had relapses according to my MS specialist. I thought a "relapse" meant you had to completely recover your symtoms, but I was wrong. I had bilateral lower leg numbness since june/july 2007 that has never completely subsided and then an episode of left leg heaviness/weakness and left elbow dullness. So based on my findings (even with normal MRIS twice) she diagnosed me and I just started on therapy. Some other diseases that can cause lesions are CNS vasculitis, Behcet's, and devics syndrome I believe. I was tested for everything, so she made the diagnosis by a process of elimination and clinical results/findings. She explained to me that its more and more common now not to have lesions in up to 10% of cases. (It used to be 5%)...... good luck, hang in there...okay? Also, if you haven't allready, make sure you get an MRI of your cervical spine and thoracic spine (lesions can show up in here and not in your brain which I'm assuming they did)....... keep us updated on what your neuro said.... take care hun.
Tara
i was diagnosed 2 wks ago formallly with MS and all my MRI's are normal (head, c-spine,t-spine,and l-spine).... my spinal tap was positive on 2 occasions and I've had relapses according to my MS specialist. I thought a "relapse" meant you had to completely recover your symtoms, but I was wrong. I had bilateral lower leg numbness since june/july 2007 that has never completely subsided and then an episode of left leg heaviness/weakness and left elbow dullness. So based on my findings (even with normal MRIS twice) she diagnosed me and I just started on therapy. Some other diseases that can cause lesions are CNS vasculitis, Behcet's, and devics syndrome I believe. I was tested for everything, so she made the diagnosis by a process of elimination and clinical results/findings. She explained to me that its more and more common now not to have lesions in up to 10% of cases. (It used to be 5%)...... good luck, hang in there...okay? Also, if you haven't allready, make sure you get an MRI of your cervical spine and thoracic spine (lesions can show up in here and not in your brain which I'm assuming they did)....... keep us updated on what your neuro said.... take care hun.
Tara
johndo555
04-18-2008, 12:37 PM
Steph:
I am going through the same thing as you right now.
My MRI is negative but my neuro wants me to get a spinal tap.
Yes, there are cases of negative MRIs with MS.
The MS clinic told me that we should usually see something on another MRI about 6 months later, but not necessarily.
tarapags1107: I have had like you a negative MRI. How long did it take between your first "lapse" and your first spinal tap? I should get one soon but I fear it will not help much because I only have a few symptoms remaining... I would like to know more about your experience.
This is a great forum because it's not in the doctor's office that we can learn
so much from other people's experiences!
Thanks!
J
I am going through the same thing as you right now.
My MRI is negative but my neuro wants me to get a spinal tap.
Yes, there are cases of negative MRIs with MS.
The MS clinic told me that we should usually see something on another MRI about 6 months later, but not necessarily.
tarapags1107: I have had like you a negative MRI. How long did it take between your first "lapse" and your first spinal tap? I should get one soon but I fear it will not help much because I only have a few symptoms remaining... I would like to know more about your experience.
This is a great forum because it's not in the doctor's office that we can learn
so much from other people's experiences!
Thanks!
J
stephthepeach
04-18-2008, 04:32 PM
Tara and everyone, thanks for your words of encouragment and more than anything else thanks for "listening" to me vent. :)
I've had these symptoms since at least 2001 (Tara, didn't you say that's when yours began?). I just really feel like something would show on my MRI w/ having these symptoms for so long.
I go between feeling relieved that I have something much more "minor" than MS and feeling really scared that I have something far worse.
I didn't have a scan of my spine...but the thought of having an LP...yikes! I'm fairly sure I would flip out during that test.
I've had these symptoms since at least 2001 (Tara, didn't you say that's when yours began?). I just really feel like something would show on my MRI w/ having these symptoms for so long.
I go between feeling relieved that I have something much more "minor" than MS and feeling really scared that I have something far worse.
I didn't have a scan of my spine...but the thought of having an LP...yikes! I'm fairly sure I would flip out during that test.
agravy
04-23-2008, 11:35 AM
i'm concerned too. i've been in limbo land since 2005. i've been on solu-medrol iv infusion 2 times monthly for the past year now & am scheduled for a baclofen pump surgery may 5th. they have yet to find lesions, but my neuro says he has not ruled out ms. i have been tested & ruled out everything under the sun. my lp showed an elevated mylen basic protien count, but no o-bands. i have offically been dx with the following: transver myletis, 2 cases of on, mylepothy(sp?), lumbar myepothy, degenerative disc disease, & demylenating disease- unspecified(this is the ms undiagnosed). i also have drop foot & severe spasticity & numbness in my right leg & have to wear a legbrace just so i can walk. i am in the process of applying for disability which my neuro & the dr.'s at my pain clinic definitly feel i need to be on. my thing is some of you have stated that you can get a clinical dx w/out the lesions. with all of the things that i have that are usually due to ms, why won't my neuro go ahead & give me the dx so i can get on the ms drugs to keep me from getting any worse. there are patients that i talk to while i'm getting my infusions that state that it took them 13 years to have lesions present & they had everything i have & now she is crippled & in a wheelchair because she didn't get meds soon enough. this terrifies me!!!! i don't won't thisto happen to me. my neuro knows it's ms or he wouldn't keep telling me he'snot ruling it out, so why won't he get off his butt & help me. i have 2 daughters (14 & 6 ) to raise & i don't need to be sitting around stressed out worring about if i have ms or not when i just know that i do. any suggestions?
MSNik
04-23-2008, 02:24 PM
agravy, I suggest you start a new thread so that more people will respond to your querie...however my one big question is why havent you gone to see another doctor or an MS specialist (my apologies if you have, but you didnt mention it). An MS specialist, in particular will be able to get you a definative dx faster...and rule out MS if he/she doesnt feel it is MS.
A second opinion sounds really called for in your case..
nikki
A second opinion sounds really called for in your case..
nikki
stephthepeach
04-23-2008, 09:59 PM
Agravy,
Wow!!! I'm sorry you're going through all that. I see your in Alabama...I don't know how far you are from Atlanta but there are several MS specialists here. Can you change neurologists? I know that's easier said than done-but it sounds like you don't have much of a choice. Good luck-I'm sure it'll all work out. Maybe you could let your doctor know how much you believe that you need to be on some sort of DMD. You know your own body better than anyone else...be the squeeky wheel. Again, good luck.
Wow!!! I'm sorry you're going through all that. I see your in Alabama...I don't know how far you are from Atlanta but there are several MS specialists here. Can you change neurologists? I know that's easier said than done-but it sounds like you don't have much of a choice. Good luck-I'm sure it'll all work out. Maybe you could let your doctor know how much you believe that you need to be on some sort of DMD. You know your own body better than anyone else...be the squeeky wheel. Again, good luck.