Roadworker
06-21-2008, 04:15 PM
Well i go to the Doc this wed afternoon for the Spinal tap results ( these head aches are the worst).
I spoke with him during week about the head aches i am getting , and during our talk he is still thinking ( NO matter how the Tap comes out) that we are dealing with PPMS?
So far all others test came back good, Is this possible ( PPMS) are can doc be way off?
What else could be given me this steady back pain and extreme weakness and pain in upper thigh.
This all started when i herniated the L5 disc, but since then Jan 08 they re-did Mri and herniated disc is healed.
I don't know but doctor is still stating there is no way i can do my job anymore ( CDL) driver and heavy equipment.
I just wish this would all go away.
Well lets see what the Spinal findings are thyis week...
Mike
I spoke with him during week about the head aches i am getting , and during our talk he is still thinking ( NO matter how the Tap comes out) that we are dealing with PPMS?
So far all others test came back good, Is this possible ( PPMS) are can doc be way off?
What else could be given me this steady back pain and extreme weakness and pain in upper thigh.
This all started when i herniated the L5 disc, but since then Jan 08 they re-did Mri and herniated disc is healed.
I don't know but doctor is still stating there is no way i can do my job anymore ( CDL) driver and heavy equipment.
I just wish this would all go away.
Well lets see what the Spinal findings are thyis week...
Mike
Sponsor
MSNik
06-21-2008, 09:18 PM
Hi Mike...Ill be thinking of you on Wed...I also go to my Neuro for some results...so I know I wont forget you! But you asked a good question and I still have to ask you, WHY PPMS and not RRMS?? Its a world of difference...both in treatment and progression...you need to ask him and get an answer that you can understand and then tell us so we can help you figure this out...seriously, if you still hear PPMS and cant explain why he thinks that, were going to beg you to go for a second opinion! I just dont see any reason why he would think PPMS...I hoenstly dont get that.
But no matter what, we are here for you...youve got much support here and we are all hoping for the best for you..
hugs,
Nikki
But no matter what, we are here for you...youve got much support here and we are all hoping for the best for you..
hugs,
Nikki
MSJayhawk
06-21-2008, 10:36 PM
Ask your neurologist to show you on the McDonald Criteria why it is PPMS and not RRMS or ??? Good Luck!!
Canadian gal
06-22-2008, 02:19 PM
They don't normally try to categorize us until we at least have a dx, and then they observe us over time (usually 5 yrs). However, if he is right about it being MS (and without going back to read all your posts to see your symptoms), I can guess at why he may be leaning towards PPMS.
If you are not relapsing, and the symptoms came on fairly suddenly (and have not abated significantly), then it would appear to be more "progressive" then Relapsing/Remitting.
From research I've done . . . people with PPMS tend to be older when the symptoms come on, and there is a higher % of male in this category (vs. RR, which is mostly female). Many people with PPMS present with predominately motor symptoms, and they tend to have lower lesion loads, particularly gad-enhanced lesions (showing inflammation). There is usually more spinal involvment though, and sometimes there is ONLY spinal cord lesions with PPMS.
There is another disease (or at least they think it's a different disease), called Devic's. At one time they thought it was a variant of MS, but they are now leaning towards it being a different disease process all together. I suspect a number of people dx with PPMS might in fact have Devic's, but it has been poorly understood, so sometimes they just get categorized as PPMS. People with Devic's have mostly very large spinal lesions (often that's all they have, and/or very few brain lesions), and they generally have ON too.
There are very few diseases that cause spinal lesions though . . . so that sometimes makes the dx of MS/Devic's easier. There is a test out of the Mayo Clinic now (I think) that can usually differentiate between PPMS and Devic's.
Of course any time the spinal cord is damaged, this can have immediate consequences, so disability from MS (and Devic's) often corresponds better with having spinal lesions.
I am a mostly spinal lesion person, and it has been difficult at times. However, I am at least 17 yrs into this disease, and so far have recovered from every flare-up. When we have few brain lesions, mostly spinal lesions, we don't recover/fluctuate with relapses and remissions, I think they tend to suspect PPMS rather then RRMS.
Good luck on your results!!
Cherie
If you are not relapsing, and the symptoms came on fairly suddenly (and have not abated significantly), then it would appear to be more "progressive" then Relapsing/Remitting.
From research I've done . . . people with PPMS tend to be older when the symptoms come on, and there is a higher % of male in this category (vs. RR, which is mostly female). Many people with PPMS present with predominately motor symptoms, and they tend to have lower lesion loads, particularly gad-enhanced lesions (showing inflammation). There is usually more spinal involvment though, and sometimes there is ONLY spinal cord lesions with PPMS.
There is another disease (or at least they think it's a different disease), called Devic's. At one time they thought it was a variant of MS, but they are now leaning towards it being a different disease process all together. I suspect a number of people dx with PPMS might in fact have Devic's, but it has been poorly understood, so sometimes they just get categorized as PPMS. People with Devic's have mostly very large spinal lesions (often that's all they have, and/or very few brain lesions), and they generally have ON too.
There are very few diseases that cause spinal lesions though . . . so that sometimes makes the dx of MS/Devic's easier. There is a test out of the Mayo Clinic now (I think) that can usually differentiate between PPMS and Devic's.
Of course any time the spinal cord is damaged, this can have immediate consequences, so disability from MS (and Devic's) often corresponds better with having spinal lesions.
I am a mostly spinal lesion person, and it has been difficult at times. However, I am at least 17 yrs into this disease, and so far have recovered from every flare-up. When we have few brain lesions, mostly spinal lesions, we don't recover/fluctuate with relapses and remissions, I think they tend to suspect PPMS rather then RRMS.
Good luck on your results!!
Cherie
Roadworker
06-22-2008, 03:11 PM
Ok thanks all for your thoughts and time.
I don't really know what is going on , but so far all the test came out good, MRI, neck, brain, back, and some brain test all good so far.
He said the last 2 visits that he thinks we are dealing with this PPMS, i guess with age 42 and suuden problems which all started Jan 08 about 2 weeks after i hurt my back( herniated disc) whhich is better.
When they could not find the reason for the pain, weakness in upper thigh and stated the L5 disc would not cause the thigh pain.
The neuro i went to first found that i was "Hyperreflexia" and that is how i am here now.
I have extreme pain in lower calfs muscle like a bad cramp, also very bad back ache, and of course the pain in upper thigh and weakness, started out in only R thigh now both are starting. Have problems climbing stairs.
Now beofre this hernited disc i was normal ( well almost normal) and there is also auto immune in my family.
Well i will find out soon, i am really prayer it is not. I lost my Dad 3.5 years ago and have a very sick sister. So i more are less take care of my Mom and sister and this would not make that easy.
mike
I don't really know what is going on , but so far all the test came out good, MRI, neck, brain, back, and some brain test all good so far.
He said the last 2 visits that he thinks we are dealing with this PPMS, i guess with age 42 and suuden problems which all started Jan 08 about 2 weeks after i hurt my back( herniated disc) whhich is better.
When they could not find the reason for the pain, weakness in upper thigh and stated the L5 disc would not cause the thigh pain.
The neuro i went to first found that i was "Hyperreflexia" and that is how i am here now.
I have extreme pain in lower calfs muscle like a bad cramp, also very bad back ache, and of course the pain in upper thigh and weakness, started out in only R thigh now both are starting. Have problems climbing stairs.
Now beofre this hernited disc i was normal ( well almost normal) and there is also auto immune in my family.
Well i will find out soon, i am really prayer it is not. I lost my Dad 3.5 years ago and have a very sick sister. So i more are less take care of my Mom and sister and this would not make that easy.
mike