NaomiWise
08-02-2004, 11:31 AM
I am so new to all of this. I am trying to get myself educated. But at this point, the more I learn the more I find to fear. I read that even if a person has RR MS that 50% get the more progressive type within 10 years. But, my question, are these statistics old? Afterall, with Interferons, shouldn't fewer than 50% progress that quickly. Don't you think after the new meds have been around for a while that these statistics will be reevaluated? Or are these figures based on what an untreated case could expect?
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NaomiWise
08-02-2004, 11:34 AM
Sorry for the double post.
Naomi
Naomi
PghGuy00
08-05-2004, 10:29 AM
Hi Naomi,
I have been thinking along those same lines. I was DX less than 2 months ago and neuro prscribed Avonex. (however just had 2nd opinion and this neuro is not convinced I have MS. Virtually no symptoms, but MRI does show lesions.) But if the interferon injections have been having an impact on reducing new lesions, etc, one would think that the statistics still often used may not be as valid anymore. But I guess that maybe not enough study has been performed to develop new baselines for progression. Just my thoughts.
PG00
I have been thinking along those same lines. I was DX less than 2 months ago and neuro prscribed Avonex. (however just had 2nd opinion and this neuro is not convinced I have MS. Virtually no symptoms, but MRI does show lesions.) But if the interferon injections have been having an impact on reducing new lesions, etc, one would think that the statistics still often used may not be as valid anymore. But I guess that maybe not enough study has been performed to develop new baselines for progression. Just my thoughts.
PG00
NaomiWise
08-05-2004, 10:34 PM
Hi PGOO,
You say you have few MS symptoms but you do have brain lesions. Same story as mine. After having a month long problem with my right foot/leg I had an MRI and lesions were present. But I've been doing alot of research, as I'm sure you have, and found that brain lesions in my case may have come from 2 other sources.
I read that migraines can cause lesions (I've have frequent, bad migraines for 20 years). And artificial sweetners can cause lesions in the brains of monkeys. (I drank several 2 liter bottles of Diet Sprite a week for two years)
I now wonder how many folks in the general public have brain lesions?
What are your thoughts?
Marlene
You say you have few MS symptoms but you do have brain lesions. Same story as mine. After having a month long problem with my right foot/leg I had an MRI and lesions were present. But I've been doing alot of research, as I'm sure you have, and found that brain lesions in my case may have come from 2 other sources.
I read that migraines can cause lesions (I've have frequent, bad migraines for 20 years). And artificial sweetners can cause lesions in the brains of monkeys. (I drank several 2 liter bottles of Diet Sprite a week for two years)
I now wonder how many folks in the general public have brain lesions?
What are your thoughts?
Marlene
PghGuy00
08-06-2004, 06:02 AM
That is interesting. Same sort of situation here too. The whole situation started this past March when the usual seasonal allergies start to kick-in. Happens every year, I have the usual headaches on the right side only from allergies/sinus infections. This year the headaches got extremely bad and was seeing my PCP who said my sinus headaches were causing the migraines. He put me on Maxalt which was incrdible, but not supposed to take everyday, (I was). I was also on antibiotics for the allergy/sinus infection on the right side. When the headaches got too severe, (God awful pain and my right eye hurt to move it and vision blurry) PCP sent me for the MRI and the rest is history. I also consume great quantities of diet pop ( I cant keep track of how much)( It all sort of make one wonder at times hmmmmm) So....., My new neuro wants to schedule a spinal tap soon, so we should have some better info from that. Hope youre doing well, and try not to drive yourself crazy thinking about all the possibilities. Ive been doing enough of that for 10 people.
PG00
PG00
NaomiWise
08-06-2004, 10:03 AM
PghGuyOO,
From what I've heard Aspartame consumption can cause symptoms that mimic MS. After hearing that I've not had another drop of a diet drink. I can't completely stop the effects of migraines, but I hope that Imitrex lessens the damage.
I have been driving myself crazy thinking about the possibilities.
I am to have a cervical and thoracic MRI on Monday. I feel that if lesions are present there I probably can't blame them on the migraines. I hope there are none present. I think I'm in for a lumbar puncture at some point. But, if this does turn out to be MS I'd rather start on treatment than wait for another episode that could cause damage.
But, I do feel that I should have educated myself more about the damage migraines and diet drinks could cause before I found out in this manner.
Marlene
From what I've heard Aspartame consumption can cause symptoms that mimic MS. After hearing that I've not had another drop of a diet drink. I can't completely stop the effects of migraines, but I hope that Imitrex lessens the damage.
I have been driving myself crazy thinking about the possibilities.
I am to have a cervical and thoracic MRI on Monday. I feel that if lesions are present there I probably can't blame them on the migraines. I hope there are none present. I think I'm in for a lumbar puncture at some point. But, if this does turn out to be MS I'd rather start on treatment than wait for another episode that could cause damage.
But, I do feel that I should have educated myself more about the damage migraines and diet drinks could cause before I found out in this manner.
Marlene
nellie99
08-06-2004, 02:32 PM
I, too, am an avid diet soda drinker. I have been for nearly 20 years now. I just wonder that if aspartame mimics ms, and you continue to consume it, wouldn't you have ms symptoms continually? Have you talked to your doctor about the aspartame connection?
Jewel2
08-06-2004, 03:00 PM
Hi,
The whole aspartame issue has been discussed quite a bit on this forum. It is always an interesting topic. If you run a search you should find the threads with various points of view.
I've stopped drinking caffeinated soda (mostly) because of the damage it does to bones. Granted, this is still controversial, but I'm already dealing with osteopenia, so I don't want to take the risk.
Take care,
Julie
The whole aspartame issue has been discussed quite a bit on this forum. It is always an interesting topic. If you run a search you should find the threads with various points of view.
I've stopped drinking caffeinated soda (mostly) because of the damage it does to bones. Granted, this is still controversial, but I'm already dealing with osteopenia, so I don't want to take the risk.
Take care,
Julie
PghGuy00
08-06-2004, 03:40 PM
Marlene,
My spinal MRIs came back clean!!! Making me wonder about those 6+ cans of Diet pop i drink every day.
PG00
My spinal MRIs came back clean!!! Making me wonder about those 6+ cans of Diet pop i drink every day.
PG00
NaomiWise
08-06-2004, 08:14 PM
Hi,
No, I've not talked to my doctor about the aspartame connection. I did not know it existed until a few days ago. I know that no matter what his opinion is I'm to afraid to continue consuming it.
PghGuy00...I'm glad your spinal MRI came back clean. I'm having my spinal and thoracic on Monday. I'm praying that it will come back clean also. Tell me, now that yours came back clean will you still have to have a lumbar puncture? I'm curious at what point they say yeah or nay to an MS diagnosis.
Marlene :wave:
No, I've not talked to my doctor about the aspartame connection. I did not know it existed until a few days ago. I know that no matter what his opinion is I'm to afraid to continue consuming it.
PghGuy00...I'm glad your spinal MRI came back clean. I'm having my spinal and thoracic on Monday. I'm praying that it will come back clean also. Tell me, now that yours came back clean will you still have to have a lumbar puncture? I'm curious at what point they say yeah or nay to an MS diagnosis.
Marlene :wave:
nellie99
08-06-2004, 08:32 PM
I am curious to know how they are going to proceed with your diagnosis also, PGOO. I have my next MRI on Monday, and they told me it is of the C-spine. What exactly is that, does anyone know? I also have my first appointment with a neurologist on August 16. Any idea what they will do at that appointment?
Dessell
08-07-2004, 12:50 AM
Hi Nellie,
That would be of the cervical spine,or neck.I had one done a few months ago,it takes about 45 minutes,you have to lay very still and try not to swallow or it will mess the mri up,,was hard to do.lol.This will see if there is any damange to the spinal cord or mylen sheath,I have read that Spinal MS is more common,the mri will show any lesions around the spinal cord area.Hope it goes well,,
Dessell
That would be of the cervical spine,or neck.I had one done a few months ago,it takes about 45 minutes,you have to lay very still and try not to swallow or it will mess the mri up,,was hard to do.lol.This will see if there is any damange to the spinal cord or mylen sheath,I have read that Spinal MS is more common,the mri will show any lesions around the spinal cord area.Hope it goes well,,
Dessell
HeatherJM
08-07-2004, 03:15 AM
Hi Nellie;
Dessell said it all about the C-spine MRI. When you see the neuro at the office he'll just do the standard test.. follow my finger with your eyes, walk a straight line, sensitivity test. Nothing major or in need of stressing over. It'll probably be 30 - 60 minutes for a full information session. Good luck and let us know what happens!
Dessell said it all about the C-spine MRI. When you see the neuro at the office he'll just do the standard test.. follow my finger with your eyes, walk a straight line, sensitivity test. Nothing major or in need of stressing over. It'll probably be 30 - 60 minutes for a full information session. Good luck and let us know what happens!
nellie99
08-07-2004, 03:36 AM
Thanks for the info. Sorry I have so many questions, but this is so new to me, and I'm a little nervous about everything. I will let everyone know what I find out, but my neuro appointment isn't until the 16th. When the nurse called to set it up, she said they are booked through the end of the year, but they got me in right away per my doctor's request. I can't imagine having to wait until January for an appointment.
Once again, thanks for the replies!
Once again, thanks for the replies!
PghGuy00
08-18-2004, 08:41 AM
Saw A third neuro yesterday and the one large lesion appears to be "classic" MS lesion (shape, location). Three other lesions are very small and in his opinion, not significant. I havent had any types of symptoms since the first few weeks that this entire MS scenario started and thus this neuro feels that yes I could start interfeuron injections if I want, but he is not convinced that interfeuron is necessary at this time. Maybe waiting and monitoring might just be sufficient at this stage. He feel that this may be benign MS and that no progression may ever occur. (Ive seen three neuros and now have three different thought processes, talk about confusing !!!!!)
NaomiWise
08-19-2004, 11:01 PM
PgHGuy00,
Your story sounds so much like mine. After the lesions were found in my brain I had an MRI of the Cervical and Thoracic Spine...no lesions were found. Yeah!!
My doctor says based on this, the fact that I've had only one "episode" and the lesions that I do have he thinks that if I do have MS it is mild. He did, however, give me the chioce of having a lumbar puncture now or wait and have another MRI for comparison in 3 months to determine if any treatment is needed.
He told me just to call if I had a flare-up before the 3 months but at this point I'm just being monitored.
I guess you and I just have to pray that we progress no furthur!
Naomi
Your story sounds so much like mine. After the lesions were found in my brain I had an MRI of the Cervical and Thoracic Spine...no lesions were found. Yeah!!
My doctor says based on this, the fact that I've had only one "episode" and the lesions that I do have he thinks that if I do have MS it is mild. He did, however, give me the chioce of having a lumbar puncture now or wait and have another MRI for comparison in 3 months to determine if any treatment is needed.
He told me just to call if I had a flare-up before the 3 months but at this point I'm just being monitored.
I guess you and I just have to pray that we progress no furthur!
Naomi
PghGuy00
08-20-2004, 08:36 AM
Naomi,
Yes we do sound simliar. The third neuro suggested the same for me about having another MRI done in about 3 or 4 months and see if anything else has developed. I am having a lumbar done today and the results will take a while to get, so I am still trying to nail it all down. But who knows!!! The worst part about this entire thing is the fear of the unknown and I think Im starting to accept the fact that the unknown is going to be the norm, and I need to get comfortable with that fact.
PG00
Yes we do sound simliar. The third neuro suggested the same for me about having another MRI done in about 3 or 4 months and see if anything else has developed. I am having a lumbar done today and the results will take a while to get, so I am still trying to nail it all down. But who knows!!! The worst part about this entire thing is the fear of the unknown and I think Im starting to accept the fact that the unknown is going to be the norm, and I need to get comfortable with that fact.
PG00