more on PP MS

[marknvicf]

After I sent out my last post I then and went and looked around for what has been said about PP MS. I should have done it the other way around. Sorry. One person said that PP MS begins in the spine, but my lesions are on my brain, I want so say frontal cortex, but without the MRI report here, I am only 95% sure of that. However my symptoms fit PP MS at this point a whole lot better than RR MS. But I am not a Dr., nor a Neurologist and I am quite aware of that. So I am just adding this tidbit for clarity.

[marknvicf]

Yes you did. Thanks.

[Quixotic1]

Did I help with any of your confusion regarding PPMS?

Quix

[marknvicf]

One more brief comment about what I said about giving up. A lot of it had to do with the way my company was treating me. If I was single I might have done something stupid and walked away from the job and gone back to update NY to live with my dad. But if I had done that then I wouldn't have medical coverage. Who knows, maybe I would have stuck to it anyway, but there was this really nasty meeting with HR in June the made me mad as he**. I have a law firm behind me now and suddenly HR has been very nice. This is one time I won't make a lawyer joke. I mean my company was close to violating Federal law (American Disabilities Act, ADA). Almost wish they had, then I really could have retired! LOL. But I am not litigious and it would have only been a last resort. That is all I meant by giving up - quitting my job.

[Quixotic1]

I second the recommendations about the testosterone and the D3 levels with supplementation if necessary.  That data aren't absolute, but very, VERY suggestive that these things are helpful.

Quix

[monotreme]

Hi and welcome to the forum.  My husband is the one Quix was referring to who just got a diagnosis of PPMS.  He presented first with motor deficits and can not run, jump, swim etc,  He also has spastic parapesis.

His neuro said that PPMS can be diagnosed if there is an absence of relapses and remissions and instead there is a steady decline.  

You might want to get a testosterone blood level drawn.  UCLA has done very good studies showing that testosterone supplementation given to men with MS helps stop the progression of the disease.  And you should try to get the testosterone to at least 500.  Testosterone patches or bioidentical cream are better than injections.

Also, get a vitamin D3 blood level done.  Your vitamin D3 blood level should be at least 50.  This will also help stop the progression of MS.

Good Luck,
Elaine

[Quixotic1]

Well, now having read all of your posts I can tell you are a great match for us!  Welcome!  I have a whole wartload of comments to make, so get some ice cream, turn on the Olympics and relax.  You will find that I am horribly long-winded as I seem to have a comment on just about everything.

I understand your concern that you have PPMS.  Several of us have been concerned about that possibility and for some it still isn't resolved.  I have been suspicious about it for me since the onset of my first symptoms in November, 2004.  I had sudden onset of right leg weakness and spasticity.  It got progressively worse and has been joined by a few symptoms that have also progressed inexorably.  In the meantime, about 18 months after my first onset, I had a clear relapse of weakness of my right arm that almost completely resolved.  Since then I have had relapses of worse weakness and a few of Trigeminal Neuralgia.  My neuro says that for me to have a progressive kind/phase of MS I would have to have MANY more lesions.  I am lesion-poor.  I only have one brain lesion and 6 spinal lesions.  So, I am just an atypical RRMS, I guess.

You are 9 months into symptoms and that is not long enough by the McDonald Criteria to call it PPMS.  And your symptoms started with a bang!

You might want to read the Health Pages (upper right corner) on MS Categories, the McDonald Criteria (for Diagnosis).

You have only felt well for 2 days.  Be definition a remission is at least 30 days where the symptoms remit, improve or are stable.  So those were just two days when you felt better.  It s*cks to have that teasing reminder of what it was like to feel well, doesn't it?

To answer a couple of the areas where I got you confused with my blurb on PPMS.  First, I didn't mean to imply that PPMS starts in the spinal cord.  In many people with PPMS the bulk of the disease is spinal, but it doesn't have to be.  Scads of lesions in the brain could be consistent with it as well as a very active RRMS.

The "classic" PPMS has more motor difficulty than sensory, with the most common presentation being a "spastic paraparesis" - weakness of the legs with accompanying spasticity.  I have not heard that this is mandatory, just that it is the most common picture.

Above it was noted that PPMS also appears to be different from RRMS in that it has more direct axonal degeneration without prior demyelination.  So, "often" there is less of an inflammatory component.  For this reason, people with PPMS are more likely to have a negative LP.  The two things that make an LP positive ate the elevated IgG Index and the presence of multiple Oligoclonal Bands.  Both of these tests measure the antibody load in the CSF and that is related to the demyelinating lesions.  40% of people with PPMS have a negative LP.  About 10% of RRMS have a negative LP.

So, basically, your neurologist is correct about it being too early to clinch any PPMS diagnosis.

As for your symptoms, including the Mission Impossible, we've all been there, done that, and got the T-shirt.  AND, I, for one, have outgrown it!  We understand the fatigue, the crushing lack of stamina and strength.  And don't apologize to those in hotter regions (No offense, guys!).  Many of us have noted that we become useless at a certain temperature.  For me it is 75 degrees.  So it doesn't matter whether you are useless at 80 degrees or at 90 degrees.  We're all with you on that.

The depression, as you have probably read, is an intrinsic product of MS.  It does tend to be worse in people with a history of it, and your family and you should be alert to signs of worsening and thoughts of suicide.  Suicide is more common in MS than in other more disabling neurologic diseases.  That's one reason places like this are helpful.

My grandad and my father just wanted girls and that's what they got.  My dad feels the same way you do about daughters.

A final note.  We have another man, that sounds like you, who just got the diagnosis of PPMS.  He is depressed and trying to work as long as he can right now.  His name is Craig (nickname is monotreme).  He hasn't been on for several months, but his wife is a regular and her name is Elaine.  He was just diagnosed with PPMS after being hustled out of other neurologists' offices as a crock while he became more and more disabled and spastic.  She is helping us get a great education on PPMS.

His doc (and others) have found that many men (not women) with PPMS respond well to Copaxone that is "jump started" by monthly steroids for 6 months and then continued on Copaxone alone.  I realize that you had a severe reaction to the steroids, but thought this might be info that your neuro would like to see.  

Which brings up my last comment.  You feel very confident in your neurologist, and he is smart and listens to you.  These docs are goldmines and I would not have you change for anything!   Keep him!  And we can also help you funnel questions and info to him.

I hope all this helps.

Quix

[Quixotic1]

Hi, I think that whether Disability Income is taxable depends on who paid for the premiums.  In my case it was part of my benefit package and and my employer paid the premiums.  Mine is 100% taxable so it really is (in my case) 65% of my prior income.

Quix

[marknvicf]

I should mention now that I am home and relaxing that my mood is better, I can stop all the whining. Sometimes I think that I need someone to tell me to get off of the pity pot. LOL. What I was referring to is the short term disability and that is taxed. As such we could not survive a month (long story) but after the sd then it would be 60% without taxes. So for example, lets say I get thru this year and then get really sick next year. I would register with the sd company and after my sick time runs out I would then get the 60% with taxes which would run for about 16 weeks, then I would go to Long Term (Aetna) at 60% without taxes as you say. However, then unless I am mistaken I wouldn't get the good raises anymore and a fixed income right now would screw up my retirement plans royally. But that isn't really the biggest deal.

Also to jensequiter (love that handle!!) I have air cond. at home and work and in my car. But even the short time getting to my car (with a handicap hanger) the heat instantly brings on a worsening of the symptoms. So I should apologize to all those who have MS but don't have air. How insensitive of me. Shoot if you lived near me you could come over as long as you can handle 3 teens, 6 yo girl, 3 dogs, 6 cats, 2 rabbits and some fish. LOL. Oh yeah, and my wife, but she is really cool and nice. So as I have said to others I complain since the list of things that I am thankful to God for is too long to cover here. In fact I have had an explosion of my relationship with God since this has started. Even tho, I have a yucky attitude sometime is all. Sometimes it gets to me since I used to be able to play with my little one (love of my life) and now am unable to, outside at least, and even inside it has to be simple and not too arduous. She is very energetic.BTW, the teens are step-kids so the relationship isn't the same as with my little girl. GIRLS ROCK!!!!! I am so blessed to have a girl as I just don't do well with boys. Some psychologist out there could have a field day with that one.

One more thing to add: the thing that has frustrated me lately is that on Aug 1 I should have been able to get everything in order, but the Neuro place screwed up. Then we went on Aug 15th and still not ready. Now my next appt. is Sept. 19. I know I should go somewhere else, but I just love my neuro doc to death and the fault isn't his, it is his office, especially since they are re-centralizing offices etc. And while I've read one should see an MS specialist (actually I have no idea if he is or not), this guy seems to know exactly what's happening. So what happens is that if I am out a sick day I get 0% pay, but if the Short Term Dis gets extended then a sick day is 60%. I really am not bad enuf not to work, especially as long as I have eyes and arms. Being a Software engineer has it's advantages I guess. I feel sorry for a construction worker etc. who gets MS. Anywho, thanks for listening, I really need people to talk to in hard times and this really helps.

[jensequitur]

Yeah, that neuro-psych exam really shows where the holes are, doesn't it?  It's quite possible that you're shooting straight for the PPMS, as your MIL mentioned - but it's also possible that you've had silent MS for years, and are now approaching the secondary-progressive stage.  Which means no relapses, just steadily getting worse.

Of course, it's hard to tell when you feel bad all the time from the heat.  I expect things will get better when the temp goes down.  I spent about two months feeling like crud, then we got a cold front moving in...  now I feel all right, aside from the shaky head and hands.

[Amyloo]

Hi Mark,

Just want to say I am sorry for your difficulities; you are not alone.  God helps me through as well.  I want to comment on one thing for you:  disability pay at 60% works out to be about the same as net take home pay; it is tax free.

Love and prayers to you, Amy

[marknvicf]

I am just diagnosed. I understand why he won't go along with the PP MS idea yet, but I did have a remission: 2 days. That's it. My mother in law is a very experienced nurse and thinks it may be very likely that I have PP MS. But as jensequitur said above, maybe it will take a while to be sure. It all started around X-mas 2007 when I had a small stroke that threw me for a good loopy for 2 months and as a result of that happening I got a brain MRI and they saw the lesions, not to mention all the other  symptoms of MS of which I have about 80%. The worst is the fatigue and my memory has gone from a 46 yo to a 90 yo. Literally. So since the beginning of the year, the MS symptoms just get slowly worse little by little, day by day. Right now, I have short term disability available if needed, but I keep going even tho I feel like poop since we can't afford a 60% paycheck. And being in Michigan, this heat and humidity is hell to me. I can't imagine being any further south. My neurologist needs to finish up a couple of things before coming up with a treatment plan. He has already tried 3 days of IV Solu-medrol which helped for 2 weeks then suddenly stopped. Also it caused a GI bleed and black stool and a stomach ache for 2 months. My neuro is a great guy and an has an excellent reputation. Very patient and he actually listens. The motor problems you mentioned haven't been a big deal yet, a few times a the beginning I would have morning weakness in my arms mostly and a couple of times in my legs, but none since. The list of symptoms is like this:

1. Attention deficit (I used to be hyper-focused at work, school etc.)
2. Dizziness and vertigo
3. Very bad memory - occasionally I have complete amnesia of events, not to mention inability to remember numbers etc.
4. No stamina, period. Barely can walk from my car to my desk at work, especially when the temp is over 80. Even doing the smallest things wears me out.
5. Tons of lesions on the brain as I said.
6. Loss of coordination. Trip over about anything.
7. No banding in Spinal fluid. Strange. But that's true for about 10%.
8. Severe depression. I've had mild depression where SSRI's helped, but the tri-cyclic I am on now barely touches it. SSRI's are useless.
9. Cognitive problems - takes a lot longer to figure out things - I found out it's the speed that is affected not the IQ.
10. Bowel - IBS like symptoms, bladder problems too.
11. Constant inability to find words when speaking.
12. Crabby as HELL! I know it's part of the depression but it's not good for my family.
13. The very worst fatigue (all the time) that I have ever had.
14. Well, how else do you put this: sexual impossibility (I am a guy - get the picture?)

I don't know if any of you have had this, but where I am they have a Neuro-psycholgist (PhD - Piled high and Deeper), who gave me 4 hours of testing. The memory tests were the worst. I used to be able to remember 12 digit numbers without trying, now when she got past the 5th number I started to forget the first.She showed a geometric design and I could hardly remember more than a couple of squares. Sorry to complain, but this is my new reality and if it weren't for God I would have given up. If I were single I would have given up too. Well, my attitude ***** and I apologize.

[jensequitur]

That is correct - much of the damage in PPMS happens in the nerves, rather than in the myelin, so lesion formation might not occur at all for some patients.  I know of one forum member named Craig, who has been finally diagnosed with PPMS after many years of doctors telling him that there was nothing wrong, because he has no lesions.

Now that I've had a couple of relapses and remissions, I know that I have RRMS.  Because my remission status isn't that different from my relapse status, I suspect that I'm heading toward secondary-progressive MS, but since I'm still having relapses, I'm not there yet.  When I was first diagnosed, I spent much of that year in relapse, so I thought perhaps I was PPMS - not so.  And doctors don't want to saddle you with that diagnosis until they're absolutely sure - usually after a couple of years of observation.

So my advice is to wait and see how your symptoms develop.  Once things calm down and you're on some sort of DMD, you should either see relapses, or not.  Then you can start asking about PPMS.

[essdipity]

Hi Mark, and welcome to the MS forum. We're glad to have you, and I think you'll be glad you came. Have you read our Health Pages? (Click at top right.) There's a great deal of info there that you should find interesting, including discussion of the different forms of MS.

To the best of my understanding, there is no criterion saying that a particular form starts in a particular place. It is much more a matter of the type of damage the disease does and with what kind of frequency. From reading Quix's essays here and in the Health Pages, I've learned that PPMS often attacks the nerves themselves rather than the myelin, so demyelination does not tell the whole story. There may be "black holes," where brain matter no longer exists, and there may be atrophy if this continues. (Someone please correct me if my memory is faulty here.)

In RRMS, relapses are separated by at least a month. From what you've written, that hasn't happened in your case. But my big question is, what does your doctor say? He or she must have given you some indication of your MS status. This is something all of us want to know, just for our own purposes, but more than that, there are practical decisions which depend on this. Are you on any disease modifying drug (CRAB)? These are prescribed for RRMS, with some exceptions.

Are you disabled in any way? Has this been quantified or qualified professionally? On a practical level, those with PPMS tend to have more motor problems, particularly in use of the legs, than sensory symptoms.

I do hope your neurologist is a MS specialist and that you are getting appropriate treatment. If you're not sure, this site is great for learning, and many more will chime in and advise you.

Again welcome.

ess