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A question about PPMS
Hello! I'm wondering about PPMS, does it hit you & not let up?I'm having a lot of weird things happening with my body & sx are getting worse. While using the computer mouse I kept feeling like something was crawling on my hand & after a bit realized it was a buzzing/ shocking feeling. While attempting to cook I have an intense shock now going up the front of my thigh muscle & it happens when I stand in one spot very long. I was trying to empty water out of a plastic measuring cup, with the slightest tilting of my hand my whole arm trembled violently. Then I was laying on the couch & went to prop myself up on my elbow & again. the arm shook really bad. I don't know if muscle twitches are a part of MS but mine have gotten really bad. I'm wondering if this is MS or something else due to the fact that most of you seem to have periods of remission & at 1st I did but something is ravaging my body full force. Is it common to have symptoms get this progressed in 3 yrs time in MS? The thought of MS verses ALS is much better though I don't want either but now am questioning whats going on. Does PPMS hit you like this? I'm sorry to question you all to death but I don't have a DR that cares enough to bother with me & am not apt to find one until I get some medical help with Drs. bills. All of this newer stuff along with the sx that I already had, has me questioning whether its MS & just the progressive form or lack of treament, or not MS at all but a neuro-muscular thing. In betwwen my shoulder blades the pin is a throbbing/burning pain that doesn't let up & thats only been going on for about 4 months now the rest of my sx have been going on for almost 3 yrs but have gotten noticably & considerably worse. I saw the psychologgist today for the 1st time & I feel it went well & she also thought the whole conversion disorder dx was simply nuts, so I plan to see her as long as I can afford it. Oh, before I forget again, I do smoke & am trying to quit(hard with all thats going on) but I saw the post that Rena put up & it also made me wonder if this isn't PPMS. Any thoughts or advice???Thank you & God bless you!!
That sounds miserable.
You don't have to have remissions to have MS. Most people have them, at least in the beginning, but not all, and after a while people tend to convert to secondary progressive, even with treatment (although the treatment may delay the transition to the progressive stage and some people never become progressive even without treatment).
So maybe you were having relapses before and just ignoring them? That's what happened with me with my first one. It was just too weird and when it went away, I figured it must have been stress or some fluke and suppressed the whole thing. Too well, apparently, since I never thought to mention it to a doctor until I was practically dx'd anyway.
Except maybe for the headaches, all those things sound like they could be from MS. The problem (well one of them) seems to be that the symptoms of MS are myriad and there are no symptoms unique to MS so it's just so hard to say.
Have you had blood tests and stuff to rule out MS mimics?
If your neuro thinks MS needs to be investigated, you should follow up and I hope your MRI funding comes through.
sho
You don't have to have remissions to have MS. Most people have them, at least in the beginning, but not all, and after a while people tend to convert to secondary progressive, even with treatment (although the treatment may delay the transition to the progressive stage and some people never become progressive even without treatment).
So maybe you were having relapses before and just ignoring them? That's what happened with me with my first one. It was just too weird and when it went away, I figured it must have been stress or some fluke and suppressed the whole thing. Too well, apparently, since I never thought to mention it to a doctor until I was practically dx'd anyway.
Except maybe for the headaches, all those things sound like they could be from MS. The problem (well one of them) seems to be that the symptoms of MS are myriad and there are no symptoms unique to MS so it's just so hard to say.
Have you had blood tests and stuff to rule out MS mimics?
If your neuro thinks MS needs to be investigated, you should follow up and I hope your MRI funding comes through.
sho
Thank you for your informative response! I have alot of the symptoms of MS & my new neuro thinks that whats going on also (awaiting MSAA to aprove MRI) but I have questioned whether or not thats it or not due to alot of people talking about having remissions. I guess hindsight is 20/20 & I worked construction & have a bad back so over the years when I would get mild muscle twitches, spasms or my legs & arms felt weak I blamed it on my job or bad back. When I got those excruciating headaches I was told that it was simply migraines. I would have periods of fatigue which I ignored & blamed on a virus, bug, or again...my job. I had my gall bladder removed in 2007 followed by a so- called heat stroke or heat exhaustion(I worked in the heat for 15 yrs & it never bothered me) but I have not recovered since, I have not been officially dxed ( & wonder if thats ever gonna happen) but I'm getting worse & my symptoms haven't let up & I'm not only getting new symptoms but the ones I had are worse. Could this be a more progressive form or simply lack of treatment?I have thought mabey I have some weird muscle condition but due to the buzzes, shocks, vibrations, twitches , ect, I know something neurological must be going on too. I have bowel incontinance but have to bear down ( like I'm giving birth) to empty my bladder & most here have the bladder affected more. I pray the MSAA comes through because all this stuff is happening & not letting up & quite frankly I trust all of you on this site more than I ever would a DR. right now. Does this sound like anything that you have gone through? Thank you & any suggestions would be appreciated! God bless you!
I just wanted to follow up on this a little as when I was being dx'd with MS, I was convinced I must have primary progressive MS and so read a lot about it. I later remembered one incident some years previously that was unlikely to be anything except a mild relapse (couple weeks of odd sensory stuff) followed by remission so I realized that I didn't have PPMS, but I might have SPMS (secondary progressive MS).
There are a couple important points about PPMS.
1. PPMS is harder to dx as it doesn't have the stereotypical relapses and remissions and thus is harder to distinguish from a lot of other chronic neurological disorders. According to the McDonald criteria, among other things, you have to have at least a year of ongoing progression without remission to be dx'd with PPMS.
2. The progression in PPMS can be faster or slower. The natural history studies I read said that despite the image of PPMS as rapidly progressing, the rate of progression actually varies widely.
3. If you used to have remissions, you can't have PPMS. If you have PPMS, by definition you have had ongoing progression without remissions from the beginning.
However, if you have relapses and remissions and then shift to a more progressive course (even with overlapping relapses), you then have SPMS. So you could have moved to a more progressive course, which means the standard DMDs are less likely to help you.
4. The line between RRMS and SPMS is not sharp. I have read that the transition often can only be identified retrospectively. The last time my neuro offered an opinion on this subject, he said I might be transitioning to SPMS and that he thought I was having "subtle relapses with lots of residual deficits" (how one can draw a line between that and straight progression is still not clear to me). I don't really think there is a difference in how my MS was progressing so I didn't think this was a new thing, but the point is probably moot.
Before the current four-type classification was generally excepted, there were some articles written about "single attack progressive" (SAP) or transitional progressive (TP) multiple sclerosis in which people have one attack and a period of remission followed by ongoing progression. The progressive period is most similar to PPMS. This is the course that I think is most similar to mine, but in the current classification it is subsumed under RRMS/SPMS.
There are a variety of points of view on the relationship between PPMS and SPMS. Some researchers think PPMS and RRMS/SPMS are two different diseases. There has been some research that show that they have different characteristics with PPMS having more spinal lesions, fewer brain lesions, and fewer enhancing lesions. On the other hand, some natural history studies suggest that PPMS and SPMS are essentially the same thing except that PPMS has had its relapsing-remitting phase cut off.
4. Remission doesn't necessarily mean complete remission or back to normal. It just means an improvement that lasts or stabilizes for a certain amount of time (arbitrarily a month).
I hope this is somewhat helpful
It sound like you don' t have a dx. I hope you get some help and answers soon.
sho
There are a couple important points about PPMS.
1. PPMS is harder to dx as it doesn't have the stereotypical relapses and remissions and thus is harder to distinguish from a lot of other chronic neurological disorders. According to the McDonald criteria, among other things, you have to have at least a year of ongoing progression without remission to be dx'd with PPMS.
2. The progression in PPMS can be faster or slower. The natural history studies I read said that despite the image of PPMS as rapidly progressing, the rate of progression actually varies widely.
3. If you used to have remissions, you can't have PPMS. If you have PPMS, by definition you have had ongoing progression without remissions from the beginning.
However, if you have relapses and remissions and then shift to a more progressive course (even with overlapping relapses), you then have SPMS. So you could have moved to a more progressive course, which means the standard DMDs are less likely to help you.
4. The line between RRMS and SPMS is not sharp. I have read that the transition often can only be identified retrospectively. The last time my neuro offered an opinion on this subject, he said I might be transitioning to SPMS and that he thought I was having "subtle relapses with lots of residual deficits" (how one can draw a line between that and straight progression is still not clear to me). I don't really think there is a difference in how my MS was progressing so I didn't think this was a new thing, but the point is probably moot.
Before the current four-type classification was generally excepted, there were some articles written about "single attack progressive" (SAP) or transitional progressive (TP) multiple sclerosis in which people have one attack and a period of remission followed by ongoing progression. The progressive period is most similar to PPMS. This is the course that I think is most similar to mine, but in the current classification it is subsumed under RRMS/SPMS.
There are a variety of points of view on the relationship between PPMS and SPMS. Some researchers think PPMS and RRMS/SPMS are two different diseases. There has been some research that show that they have different characteristics with PPMS having more spinal lesions, fewer brain lesions, and fewer enhancing lesions. On the other hand, some natural history studies suggest that PPMS and SPMS are essentially the same thing except that PPMS has had its relapsing-remitting phase cut off.
4. Remission doesn't necessarily mean complete remission or back to normal. It just means an improvement that lasts or stabilizes for a certain amount of time (arbitrarily a month).
I hope this is somewhat helpful
It sound like you don' t have a dx. I hope you get some help and answers soon.
sho
Hi Tammy,
The categories of Ms as they are known now are listed on our health page here
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Categories-of-MS/show/32?cid=36
We have members who have all different types of MS.
be well,
Lulu
The categories of Ms as they are known now are listed on our health page here
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Categories-of-MS/show/32?cid=36
We have members who have all different types of MS.
be well,
Lulu
Does everyone on the forum have RRMS & whats the differences in the different types?
Hi Tammy
Your sx are so like mine they came and completely knocked me sideways they stayed so bad i was bedridden in awfull pain for 2 mths at one point i wanted to end it all!! but since march this yr things have calmed a little i have stopped alot of drugs and only take anitdepressant and a morphine patch which controls the pain ok.
I had all over body spasms,MS hug,sensations all over twitching muscles,numb hip,shakey muscles like you,eye pain and blurred vison,vertigo,hypersensitive skin that cant be touched even by clothes, some of these sx have stopped the body spasms dont happen now but i still get them in my thighs and arms feet but i had them all over i could not even eat as they were in my jaw face!! now i have weak muscles cant do stairs or get out of a chair cant walk more then a few yrds i get awful fatiuge in myself and in my muscles i am disabled by this now i have cares look after me when i used to care for others i have 3 young children and at times it seemed hopeless i got a dx of fibro but dont feel this is right nor do my GP she feels its a neuromuscular problem or auto immune that effects the muscles like MG and fibro together.
Have you looked into PLS its like ALS but a form of muscular dystrophy has simular sx to yours? and there are lots of neuromuscular type disorders that mimic MS. I so feel for you as i am going through the same i hope that the psch will give you a good report and then your GP can get you refered to thee proper person i have often thought that my illness caused me disabilty far more quickly then some with MS have and could not understand that but maybe thats cause i dont have MS i find the torture of not knowing so depressing as i feel i dont fit in anywhere.
What test have you had again?
sam
Your sx are so like mine they came and completely knocked me sideways they stayed so bad i was bedridden in awfull pain for 2 mths at one point i wanted to end it all!! but since march this yr things have calmed a little i have stopped alot of drugs and only take anitdepressant and a morphine patch which controls the pain ok.
I had all over body spasms,MS hug,sensations all over twitching muscles,numb hip,shakey muscles like you,eye pain and blurred vison,vertigo,hypersensitive skin that cant be touched even by clothes, some of these sx have stopped the body spasms dont happen now but i still get them in my thighs and arms feet but i had them all over i could not even eat as they were in my jaw face!! now i have weak muscles cant do stairs or get out of a chair cant walk more then a few yrds i get awful fatiuge in myself and in my muscles i am disabled by this now i have cares look after me when i used to care for others i have 3 young children and at times it seemed hopeless i got a dx of fibro but dont feel this is right nor do my GP she feels its a neuromuscular problem or auto immune that effects the muscles like MG and fibro together.
Have you looked into PLS its like ALS but a form of muscular dystrophy has simular sx to yours? and there are lots of neuromuscular type disorders that mimic MS. I so feel for you as i am going through the same i hope that the psch will give you a good report and then your GP can get you refered to thee proper person i have often thought that my illness caused me disabilty far more quickly then some with MS have and could not understand that but maybe thats cause i dont have MS i find the torture of not knowing so depressing as i feel i dont fit in anywhere.
What test have you had again?
sam
I agree I really need to quit & this may be the incentive I need, I just want to feel better!! I have heard that PPMS is harder to dx so I again wonder if thats whats going on but I feel if I could find a Dr. that would care I would have already been dxed. I also wonder if the MSAA comes through on the MRI what it will show, I have a sneaking suspicion that alot more lesions will be there since my sx have gotten so much worse. My son called today & has me worried, he said he feels like bees are stinging him on his spine & his feet & calves go numb & he is getting the pins & needles so naturally I'm alarmed at this. I told him he better get it checked out now especially since he's fortunate enough to have insurance. He just turned 20 & I don't want him going through all of the frustration or the sx that I have. Thanks for your reply!
Well, Tammy, I'm not going to tell you to stop smoking. I'm an ex-smoker, and one of the things I hated most was people telling me to quit.
However, smoking will make your MS progress faster. It might also make your symptoms worse. You know that tobacco smoke constricts your blood vessels, right? Well, they've done some research on the blood vessels leading to damaged areas (lesions) of the brain and spinal cord, and found that those vessels had stenosis - some were even completely closed. This sounds to me like a bad combination - the tobacco use will constrict the vessels even further, causing the areas that are already damaged to become more damaged.
However, I wouldn't worry about PPMS too much at this point. For one thing, the disease activity of PPMS doesn't create as many visible lesions on the MRI. People can go undiagnosed for years with PPMS, because there's no clinical signs. Another thing is that there tends to be a lot more flares and relapses after diagnosis - some times three years after diagnosis.
However, smoking will make your MS progress faster. It might also make your symptoms worse. You know that tobacco smoke constricts your blood vessels, right? Well, they've done some research on the blood vessels leading to damaged areas (lesions) of the brain and spinal cord, and found that those vessels had stenosis - some were even completely closed. This sounds to me like a bad combination - the tobacco use will constrict the vessels even further, causing the areas that are already damaged to become more damaged.
However, I wouldn't worry about PPMS too much at this point. For one thing, the disease activity of PPMS doesn't create as many visible lesions on the MRI. People can go undiagnosed for years with PPMS, because there's no clinical signs. Another thing is that there tends to be a lot more flares and relapses after diagnosis - some times three years after diagnosis.
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