NCLynn
09-28-2007, 06:58 PM
Hi Everyone,
I went to the neuro today. He did not have the results of my sleep study. He looked at the MRI I had done last Friday and said the lesions have not changed, but he did say they were a little larger than subtle like the radiologist describes. He also said I have some scattered white spots, that are also consistent with MS. He said from the MRI results he has come back up a little more as far as percentage of me having MS. He is at 80%, as he has no idea what else it could be. He also surprised me when he said I have not had an attack, because there are certain things that are consistent with an attack...blurry vision, double vision, walking like your drunk, etc., and I haven't had any of these. He said he knows I have been having a lot of symptoms for quite a while now, but that these are not an attack.
He is happy I am going to the neuro-ophthalmologist on October 8 and Hopkins on October 19. He said if the neuro-ophthalmologist finds something consistent with MS, then he will be able to give me a definitive diagnosis.
So, I'm still in limbo. I did tell him that something is very wrong with me, because I shouldn't feel like I do and have all of these symptoms. He agrees.
He will call me on Monday with the results of my sleep study, but he thinks it was normal, but said not to hold him to that.
If anyone has any thoughts, please let me know.
I can't believe it's about 7 months that I've been having these symptoms this time. It was only a few months 3-1/2 years ago. Has anyone else had their symptoms last this long? I know I'm getting tired of feeling bad all the time.
I went to college with my daughter today and walked up about 20 steps (10 then a landing then 10 more) and my legs were exhausted by the time I got to the top! I had to sit down for a little bit. I asked my daughter if there was an elevator that we could take back down, so we did. My legs were exhausted for about an hour after that. This is not normal for a woman of 45! Last year at this time this wouldn't have happened!
I hope everyone has a wonderful and blessed weekend! :)
Hugs,
Lynn
I went to the neuro today. He did not have the results of my sleep study. He looked at the MRI I had done last Friday and said the lesions have not changed, but he did say they were a little larger than subtle like the radiologist describes. He also said I have some scattered white spots, that are also consistent with MS. He said from the MRI results he has come back up a little more as far as percentage of me having MS. He is at 80%, as he has no idea what else it could be. He also surprised me when he said I have not had an attack, because there are certain things that are consistent with an attack...blurry vision, double vision, walking like your drunk, etc., and I haven't had any of these. He said he knows I have been having a lot of symptoms for quite a while now, but that these are not an attack.
He is happy I am going to the neuro-ophthalmologist on October 8 and Hopkins on October 19. He said if the neuro-ophthalmologist finds something consistent with MS, then he will be able to give me a definitive diagnosis.
So, I'm still in limbo. I did tell him that something is very wrong with me, because I shouldn't feel like I do and have all of these symptoms. He agrees.
He will call me on Monday with the results of my sleep study, but he thinks it was normal, but said not to hold him to that.
If anyone has any thoughts, please let me know.
I can't believe it's about 7 months that I've been having these symptoms this time. It was only a few months 3-1/2 years ago. Has anyone else had their symptoms last this long? I know I'm getting tired of feeling bad all the time.
I went to college with my daughter today and walked up about 20 steps (10 then a landing then 10 more) and my legs were exhausted by the time I got to the top! I had to sit down for a little bit. I asked my daughter if there was an elevator that we could take back down, so we did. My legs were exhausted for about an hour after that. This is not normal for a woman of 45! Last year at this time this wouldn't have happened!
I hope everyone has a wonderful and blessed weekend! :)
Hugs,
Lynn
Sponsor
MSNik
09-28-2007, 08:07 PM
Hi Lynn. Well, progress? I think you had progress today..at least no one is telling you your crazy or that they dont know anything.....im glad you are seeing the two specialists soon >You deserve answers!
Yes, I have had symtoms last more than 3 months. Ive had a numb, tingling PAINFUL hand and fingers now for exactly a year..no drugs will touch it, and after being told for 6 months that it would eventually go away, I informed my MS doc yesterday that the only thing which is going to help is amputation. He didnt find it funny, but it hurts that bad and nothing will make it stop. Topical things, supplements, a year on Rebif, a bunch of nerve drugs, including Neurontin and Lyrica, nothing has helped at all....
The step thing, I can identify with. I run up and down my steps on my "day off" because I live in a three floor townhouse....by the time I do two or three loads of laundry in the basement and carry them back up to the bedrooms on the third floor- Im done. The day is shot. I need a dumbwaiter...actually, I need a maid.
Sorry to hear you didnt get more conclusive answers, but you ARE getting closer...
Hugs
nikki
Yes, I have had symtoms last more than 3 months. Ive had a numb, tingling PAINFUL hand and fingers now for exactly a year..no drugs will touch it, and after being told for 6 months that it would eventually go away, I informed my MS doc yesterday that the only thing which is going to help is amputation. He didnt find it funny, but it hurts that bad and nothing will make it stop. Topical things, supplements, a year on Rebif, a bunch of nerve drugs, including Neurontin and Lyrica, nothing has helped at all....
The step thing, I can identify with. I run up and down my steps on my "day off" because I live in a three floor townhouse....by the time I do two or three loads of laundry in the basement and carry them back up to the bedrooms on the third floor- Im done. The day is shot. I need a dumbwaiter...actually, I need a maid.
Sorry to hear you didnt get more conclusive answers, but you ARE getting closer...
Hugs
nikki
NCLynn
09-28-2007, 08:55 PM
I have a question. Is it possible to have MS with no change in an MRI for 3-1/2 years? I have 2 lesions and some white spots, but they haven't changed.
MSJayhawk
09-28-2007, 09:26 PM
Yes, you can. You could go into remission, too; that would be a blessing I am sure.
NCLynn
09-28-2007, 09:44 PM
Okay, I was wondering, because my husband and I had a disagreement about this. I said it's possible to have MS and not have changes on the MRI and he said it's not.
Thanks! :)
Thanks! :)
duttin
09-28-2007, 11:30 PM
Lynn,
Your appointment was productive,even though you didn't get a definate answer,upcoming appointments may confirm a dx.
Yes,I have had symptoms since 1998 in my right leg,theres been days that self amputation has sounded mighty good.I have had costant spasticity and nerve problems in both legs for 3 years and meds don't help.
I get real heavy legs just mopping my floor.It takes me all day just to do simple house work anymore.
Like Nikki I have been on rebif for 7 months and baclofen ,zanaflex,valium and quinine and these darn spasms still rear there ugly side.
hang in there the answers will come.
Your appointment was productive,even though you didn't get a definate answer,upcoming appointments may confirm a dx.
Yes,I have had symptoms since 1998 in my right leg,theres been days that self amputation has sounded mighty good.I have had costant spasticity and nerve problems in both legs for 3 years and meds don't help.
I get real heavy legs just mopping my floor.It takes me all day just to do simple house work anymore.
Like Nikki I have been on rebif for 7 months and baclofen ,zanaflex,valium and quinine and these darn spasms still rear there ugly side.
hang in there the answers will come.
NCLynn
09-28-2007, 11:33 PM
I hope so! I just want to find out what's wrong with me, because I know for a fact something is.
vicjay
09-29-2007, 01:29 AM
I can't believe it's about 7 months that I've been having these symptoms this time. It was only a few months 3-1/2 years ago. Has anyone else had their symptoms last this long? I know I'm getting tired of feeling bad all the time.
Hiya NCLynn,
Thank you for your post. I basically haven't felt "right" since September 2006. So, to share in your discomfort - you are not alone. Basically i have felt horrible since then, but the last 3 months have been dreadful, and not knowing for sure what is going on is disconcerting to be honest. But at the same time, I do admit that I am not as anxious as before - especially after finding this forum, the encouragement received is huge and welcome help.
I echo your thoughts on 'something' being wrong and until we know for sure this is a long and winding road, with many 'could be, may not be' scenarios...hang in there - the answers will come, and then we can deal with it as it happens...
Have a wonderful weekend :)
Hiya NCLynn,
Thank you for your post. I basically haven't felt "right" since September 2006. So, to share in your discomfort - you are not alone. Basically i have felt horrible since then, but the last 3 months have been dreadful, and not knowing for sure what is going on is disconcerting to be honest. But at the same time, I do admit that I am not as anxious as before - especially after finding this forum, the encouragement received is huge and welcome help.
I echo your thoughts on 'something' being wrong and until we know for sure this is a long and winding road, with many 'could be, may not be' scenarios...hang in there - the answers will come, and then we can deal with it as it happens...
Have a wonderful weekend :)