Primary Progressive - disease course?

[Wind_and_Water]

Comments by HVAC and Quix bring up some questions for me.

HVAC (Alex) said, "I have had the disease for over forty years with no treatment. ... I have double vision, vertigo, balance problems, cognitive issues, left side weakness and, headaches, and it is getting harder to walk over time. ... The bad part in PPMS is sooner or later mobility is an issue."

Quix said, "My neuro said that almost exclusively, eleven years into the disease course (as I am), a person with PPMS will have BOTH legs involved in a spastic paraparesis. (weak lower half of the body)."

My questions...

(1)   Has Alex been the extraordinary "exception to the rule"?  (ie, After 40 years, she is experiencing LEFT side weakness, not Bilateral, and mobility sounds like it is not yet a major disability issue.  After 40 years.)

(2)   Or is Quix's neurologist overly pessimistic?  (ie, He says that Primary Progressive MS "almost exclusively" results in BILATERAL spastic paraparesis after only 11 years.)

(3)   Or is Quix's neurologist saying that the TOTAL population of Primary Progressive MS patients almost exclusively has bilateral spastic paraparesis?  In which case, it would be helpful to break down the total population into SUB-POPULATIONS -- and then consider the typical disease course for each sub-population?  In which case, Alex's experience might be typical for her own sub-population?

Thanks.

(Here is the original thread...
http://www.medhelp.org/posts/Multiple-Sclerosis/mostly-neuron-death/show/1250913?personal_page_id=1380239)

[HVAC]

Wind and Water
   I was told my reality was not real growing up. I am finally understanding what is real. I have a great Doctor who gets me that is so important. She sees thing such as my Neurological and says yeah this is real.

I hope you get your answer. The MS Society has a book on PPMS it helped me out.

Alex

[Wind_and_Water]

Quix, when you are feeling up to it and you have the time, I will greatly appreciate your clarification.  Thanks.

[Wind_and_Water]

I understand what you mean by medical stoicism.

In the home where I grew up, complaint of a physical symptom was actually seen more as a character flaw than as a cause for medical investigation.

Also, due to abuse, I learned at a very early age to dissociate from physical discomfort, meaning I am chronically deaf (so to speak) to what my body tries to tell me.

It's a struggle for me to recognize the existence of a symptom.  It's also a struggle to articulate the symptom (once I've recognized it even exists).  As a result, I have a very difficult time communicating with doctors.

[HVAC]

I also grew up with a medical stocism. My parents would not allow me treatment for anything. I tore my ACLs twice and had to walk or hop no crutches. They knew about my neurological problems and threw me in the deep end. I did not learn of what they knew until they were dead.

I had to get through school with out reading and cognitive issues. I went into construction and climbed several stories with vertigo. Pain is normal to me. May be in away it was better I did not know.

If my PCP had not pushed the Neurological angle in 2007 I would not know or suspect I had anything wrong except normal wear and tear.

My husband will tell you I have always walked like a drunken duck and lose my balance easily. I have become more forgetful. If you look at me eyes are rolling out. My reflexes are classic for no signal to the left side. The med students all practice on me in the PCPs office.

I am in pain all the time. So although I do not register on a disability scale my life is no walk in the park either.

Alex

[tonyad]

     It's not such a bad thing to be the 'Extraordinary" in this case :)
I am very glad for you that as of now....And hopefully ...LONGGGGG into the future, those legs will still keep you going my Friend!

     Have a great day,
~Tonya

[HVAC]

My Neurologists think I am extraordinary.  I am the exception to the rule. The reality is its all in where the damage lies. In my case so far I have escaped spinal damage that I know of. I have only had brain MRIs. Most people with PPMS have spinal lesions and that is why the walking is affected.

I do have both legs involved just my whole left side from head to toe.

Alex

[Quixotic1]

The short answer is that the assessment of MS over time is more than an art than a science.  More neuros will disagree than agree.  There are no rules that aren't broken all the time.

The long answer I am not up for today.  Basically I think my neuro is wrong about me.  I do have weakness in both legs, but spasticity only on the right.  Time will tell.

My neuro didn't say quite what you understood.  I'll try to clarify it tomorrow.

Quix

[slightlybroken]

I saw your question going to the dreaded second page. I'll bump for you.