[slskckjebw]

I will try to make this short.
I started out over 2 years ago with ON and an abnormal MRI. It showed ON, a spot that lit up and an old spot.

They were in the white matter of my frontal lobe. They were not the shape of a typical Ms lesion but the radiologist said they were some kind of actue demylation.

c-spine was clean. T-spine was clean.

I was not dx'd at that time but I did have some neurological things going on.

10 months later I had another episode of ON and was diagnosed at that time baised on the my exam and history
(I have not given the compelte story, trying to keep it short.).

I have had continuious progression in my legs since my first episode of ON. I have never had a relape or remission.

I had another MRI this week and it showed a clean brain mri but lesions now in my c-spine.

My MS doctor is pretty sure it is PPMS based on every thing that has gone on in the past 2 1/2 years.

I have checked out Devics but I just do not fit into what Devics seems to be. I did not present in a way that would make me worry about Devices. I have been on a slow road down hill.

Well anyway I forgot my question but I am wondering if anyone here has PPMS and how you are doing.

LA

[TheSleeper]

Dx`ed with mono early in 2003 and never right after, stopped working in October 2003 because of a mysterious illness being called Chronic Fatigue Syndrome.

Walking problems in late 2004 lead to the start of neurological testing, and abnormal brain mri but unspecific as to why. Thought to be small strokes, but a cervical spine mri as a followup. Lesions found, a couple LPs 1 incomplete next negative.

3rd neuro got it right confirmed my dx of PPMS. LOL, how am I doing? Normal for me, a bit different from normal people? Walking is becoming more and more of a problem, I`m Paul, I fall, season isn`t a factor. Losing the use of my left hand an arm, plus other issues. Stuff happens though so no problems!

[slskckjebw]

Interesting. I had mono when I was 18. Really sick. Then I got sick again when I was 38. I was tested for mono and it came back positive.

I never did regain my full strength after that. I knew I was getting older and thought that was probably the reason I was not feeling up to what I once had.

In 2002 I had my first episode of trigeminal neuralgia. Several years went by with very little happening and then ON and the down hill roll started.

I have not had anything that could be called a flare but my neuro exams continue to progress each time I do to the doctor.

Of course it is affecting my daily life. I still have 5 young children to take care of.

I only had two areas on my first MRI and the doctor attributed that to high blood pressure. I do have HBP but it has been well controlled. But that was the first neuro who did not think it was necessary to treat my ON.

10 months later the ON started up again and my neuro exam was not as good as it was. I went to a new MS doctor and was diagnosed.

So, I posted this question on two other boards and because I have no brain lesions and some c-spine lesions they are suggesting I be check for Devics. THAT is a scary thing to think about.

I am not sure what to do.

LA

Originally Posted by TheSleeper

Dx`ed with mono early in 2003 and never right after, stopped working in October 2003 because of a mysterious illness being called Chronic Fatigue Syndrome.

Walking problems in late 2004 lead to the start of neurological testing, and abnormal brain mri but unspecific as to why. Thought to be small strokes, but a cervical spine mri as a followup. Lesions found, a couple LPs 1 incomplete next negative.

3rd neuro got it right confirmed my dx of PPMS. LOL, how am I doing? Normal for me, a bit different from normal people? Walking is becoming more and more of a problem, I`m Paul, I fall, season isn`t a factor. Losing the use of my left hand an arm, plus other issues. Stuff happens though so no problems!

[TheSleeper]

LA, 51 when I got mono, first time I know of for sure for me, but it did feel like some bouts of flu I had in the past, just lasted longer and the fatigue was more intense. Afterward? 51, in reasonable physical condition for someone my age at the time, but the issues were not something I could chalk up to aging, not that quickly, something was up and I was planning for it.

A guy and always keep my debt to income ratio load real low, only needed a couple more months of work for a 30 and out pension, so I scrooged it. Took me till October 2003 to decide better to be safe than sorry at the job, but I knew when was enough. I drove an 18 wheeler, it just became a bad place for me to be. Didn`t know what was wrong but something for sure. Retired and waited 10 months hoping I would wake up one day and it would be gone, no luck though so I finally filed for ssdi.

Didn`t get a confirmed dx until like march of 2006, but once a neurological problem was mentioned my research into it indicted PPMS as the most logical fit. Nothing to indicate anything different in any tests or symptoms.

Again just my opinion, much tougher for a younger person to deal with, financially and emotionally. I am good, could have been something much worse, so every day is a plus.

Good Luck!

[lady_express_44]

Hi LA,

Devic's is something they can test for easily enough, out of the Mayo Clinic. There is a 30% false negative result, meaning they don't catch "all" the cases with that test .... but they would have to have reason to suspect Devic's before they would persue this angle.

Devic's presents with very large spinal lesions, 3+ vertebrae long, generally bilateral ON, and quite often less brain lesions (especially initially) then typical MS does. There are differences with the lesions somewhat too, although they can't ALWAYS tell the difference between the two diseases by looking at the location/shape of them.

The main difference between PPMS (or even RRMS, with mostly spinal lesions) and Devic's is that MS will not normally present with that size of lesions. From what you've told us/me, here and elsewhere, your lesions in the spinal cord are NOT large, but are instead numerous. This is more indicative of MS, whatever type.

I can understand why he might be leaning towards PPMS at this point though, cause you have not proven to be experiencing relapses. HOWEVER, deciding whether we are PPMS (vs RRMS) is a bit of an art too, especially when have is mostly spinal lesions.

Take myself, for instance .... I had (have) large spinal lesions, and ONLY one main attack that lead them to believe I most likely had MS. Fortunately for me, I healed very well from that attack, and was left with very little damage to my CNS. In your case, it seems as though you were left with damage from the get-go ... so it stands to reason you would have ongoing symptoms from then on.

I had no further (major) problems for 12 yrs; not even one relapse. Had I continued with ongoing symptoms/damage from that first attack though, they probably would have categorized me as PPMS early on. But, since I didn't have that damage plaguing me, and I didn't have any more bad attacks, I went into denial instead.

In your case, you haven't had any relapses over this two years, but two years isn't a long time to go without relapses ... especially when most our problem is in our spinal cord. Those lesions are often less dynamic than brain lesions, but when they do finally become active, they tend to be more damaging.

As I mentioned, it took 12 before I had another major relapse. When they did my MRI's (it was the first time I would let them) I only had the two big spinal lesions, and 2 - 3 small brain lesions. At that point it didn't much matter whether I had Devic's or MS ... because Devic's was just considered a variant of MS anyway. It was only recently that they started considering whether it was worth testing me for it, since they defined Devic's as a seperate disease and can test for it ... but in the end I opted out. I won't change what I do (as far as treatment anyway), so it's irrelevant to me.

However, if there is any reason to think this is Devic's instead, and you are currently on a DMD, then you should be tested IF you have LARGE ENOUGH spinal lesions. DMD's are considered not suitable for Devic's, and a patient might want to consider immunosuppressants instead.

Hope that all makes sense.

Cherie

[slskckjebw]

It makes perfect sense. I do not have large lesions. They are small and several in my upper c-spine area.

My doctor said he still wants me on Beta even thought he thinks PPMS so I doubt he will give me that dx officially knowing insurance will not cover Beta if it is PPMS.

The Betaseron is working out much better for me than Avonex. No more horrible injections into my thigh. The side effects are there but much less than the Avonex.

It would be so much easier if I was a typical case of MS! It would take the frustration out of this whole thing for me.

LA

Originally Posted by lady_express_44

Hi LA,

Devic's is something they can test for easily enough, out of the Mayo Clinic. There is a 30% false negative result, meaning they don't catch "all" the cases with that test .... but they would have to have reason to suspect Devic's before they would persue this angle.

Devic's presents with very large spinal lesions, 3+ vertebrae long, generally bilateral ON, and quite often less brain lesions (especially initially) then typical MS does. There are differences with the lesions somewhat too, although they can't ALWAYS tell the difference between the two diseases by looking at the location/shape of them.

The main difference between PPMS (or even RRMS, with mostly spinal lesions) and Devic's is that MS will not normally present with that size of lesions. From what you've told us/me, here and elsewhere, your lesions in the spinal cord are NOT large, but are instead numerous. This is more indicative of MS, whatever type.

I can understand why he might be leaning towards PPMS at this point though, cause you have not proven to be experiencing relapses. HOWEVER, deciding whether we are PPMS (vs RRMS) is a bit of an art too, especially when have is mostly spinal lesions.

Take myself, for instance .... I had (have) large spinal lesions, and ONLY one main attack that lead them to believe I most likely had MS. Fortunately for me, I healed very well from that attack, and was left with very little damage to my CNS. In your case, it seems as though you were left with damage from the get-go ... so it stands to reason you would have ongoing symptoms from then on.

I had no further (major) problems for 12 yrs; not even one relapse. Had I continued with ongoing symptoms/damage from that first attack though, they probably would have categorized me as PPMS early on. But, since I didn't have that damage plaguing me, and I didn't have any more bad attacks, I went into denial instead.

In your case, you haven't had any relapses over this two years, but two years isn't a long time to go without relapses ... especially when most our problem is in our spinal cord. Those lesions are often less dynamic than brain lesions, but when they do finally become active, they tend to be more damaging.

As I mentioned, it took 12 before I had another major relapse. When they did my MRI's (it was the first time I would let them) I only had the two big spinal lesions, and 2 - 3 small brain lesions. At that point it didn't much matter whether I had Devic's or MS ... because Devic's was just considered a variant of MS anyway. It was only recently that they started considering whether it was worth testing me for it, since they defined Devic's as a seperate disease and can test for it ... but in the end I opted out. I won't change what I do (as far as treatment anyway), so it's irrelevant to me.

However, if there is any reason to think this is Devic's instead, and you are currently on a DMD, then you should be tested IF you have LARGE ENOUGH spinal lesions. DMD's are considered not suitable for Devic's, and a patient might want to consider immunosuppressants instead.

Hope that all makes sense.

Cherie

[kicker]

I seem to be "classic" PPMS. DXed at 46. Small and not a lot of lesions, Evoked potentials pointed to a problem, MRI showed lesions, walked like a drunk, taking some naps, difficulty going too long without a bathroom. DXed within one month. NOW I see I had symptoms starting in 94, but not overwhelming then. Chair (left leg and arm went totally after steps down over time to useless, in 2008.) No numbness, no tingling, etc., but can't walk. On full Disability since 2004. Currently 53, always thinking, is it age or MS? Female, had moved and have been a mom and "kept" woman since 2000. In a chair, trying to get out more as snow really puts limits on me.