[kicker]

Some of my best Board buds don't have PPMS. MS is so weird. Some PPMSers (some) are way different from me like RRMSers (some) are.

Wheelchair Kamikaze(Marcstck) is a PPMSer who writes a blog (love it - funny, informative on so many MS issues. Another PPMSer writes a blog and I often don't relate to it). But they are not 100% sure Marc has PPMS, they say Maybe it's something else, not that we know what. So I often use symtoms as what works for me. Koala and Salpal don't have PPMS, don't tell them I said this, but both are really OK (I hate saying nice things!). AARCYN is PPMS and we have an e-mail relationship but are more similar as Moms than PPMSers. My point is no matter what your MS title, everyone is so different from each other. I think with other's help, I started this thread hoping some PPMSers would present some answers. The answer was there are no answers. One of my favorite board buds was a Tourette's person who liked the MS posters (we are a fun group)(wasn't Who Moi great?). And Neuronixed Craig , He's not an MSer but is one of our own anyway. For so much stuff, his is a voice of knowledge to listen to. I can't walk but have minimal pain and seem ok cognitively. Others can walk but have burning and numbness (which I've never had).

[msbluis]

From Sally - only five (5!!) years ago, but still a good question:

"That's my question....What reasons did your MS Neuro give you, for a DX of PPMS? Do you feel like you are constantly progressing in disease and disability? Do you reach a plateau, when you stop progressing, for a time?"
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
My first neuro showed me as RR. After 8 years of CRABs, 3 rounds of Novantrone and several years of continuous-with-no-remissions-(ever)-debilitating progression, plus a consult from an MS Specialist in Birmingham, finally!

Lucky me, I'm PP.

It's been almost 20 years with PPMS. I'm now at a depressingly high number on the old Kurtske EDSS. Although I'm still at home with a part-time HHA, my next move will be to a nursing home, probably within two years. Hubby and I have discussed it.

Karen

[kicker]

I think my neurologist knew right away it was PPMS as I also suspected. He did not diagnose me with that right away in order to give me the time to try a DMD as insurance companies will not allow them for other than RRMS. After a long time of giving it a try (with no success) he wrote PPMS on my file. My current neurologist talks, is very receptive (my e-mails answered within 12 hours or less) and treats symptoms. He is good, if anything comes up not in his field, notes it and refers me out. His rating by patients on-line gives ghim 5 stars and calls him compassionate. I copy and send him. But all my tests were almost trxt-book MS results and my anecdotal history very PP, not everyone's MS is so clear-cut.

[msbluis]

Originally Posted by kicker

I think my neurologist knew right away it was PPMS as I also suspected. He did not diagnose me with that right away in order to give me the time to try a DMD as insurance companies will not allow them for other than RRMS. After a long time of giving it a try (with no success) he wrote PPMS on my file. My current neurologist talks, is very receptive (my e-mails answered within 12 hours or less) and treats symptoms. He is good, if anything comes up not in his field, notes it and refers me out. His rating by patients on-line gives ghim 5 stars and calls him compassionate. I copy and send him. But all my tests were almost trxt-book MS results and my anecdotal history very PP, not everyone's MS is so clear-cut.

My neuro and yours must have gone to the same school. I also realize he showed me as RR to get insurance to pay. I like to think he meant well, but my DH was sure ticked off (at me!) when I told him I chose to stop all CRABs due to ineffectiveness. He believed the typical neuro quote "You don't know how much worse you might be if you hadn't (or don't) continue taking it."

He wanted me to try another chemo, Cytoxin. I said no. When he reccomended Tysabri, I asked him if he had ANY PP patients on it that had shown a slowing of progression, (he's part of a large group of MS specialists in Atlanta), and he said no.

So I said "No", as well.

Now at my annual appointment he kindly smiles, chats, and apologizes for not having anything now nor on the immediate horizon for PP. I hope for others that they find something soon to help.

Karen

[nursemom]

Hi Sally, I am new here and this is my first reply. I was dx. SPMS when I changed to a new neurologist after being tired of 5min. visits with the neuro that dx. me in 2000 with RRMS, even though it was determined that I have had MS since I was 19 and I am 47 now. I had started having nerve pain in both hands and both feet and my old neuro would only give me one vicodin per day after maxing me out on neurotin was not working then sent me to pain control. I explained all my symptoms to my new neuro and he changed my dx to SPMS at my 1st visit. He said that since I had not really had improvement, but constant pain and fatigue issues, along with a few years of getting IV and by mouth steroids for what seemed to be exacerbations but no improvement that it was obvious that I had moved on to SPMS. I have not noticed massive changes, maybe small things cognitively and have not had IV steroids except once for an active lesion since around 2010 I think. My memory is poor, and my husband that was my "memory" among so many other things, passed away this past March 2014, so I can't ask him the date sadly. I hope this helps some. Love, Hugs and Prayers, Linda

[SallyC]

Hi Linda and welcome to our little abode.. .It's late and I'm just about to hit the hay,
but wanted to welcome you and tell you how happy we are to have you here.

[Aarcyn]

Where does it go?

I used to be able to get ready, clothes and minimum make-up in about 20 minutes or even less if I needed to get out the door.

Now, an hour is necessary. Making the bed or washing clothes are a day's event. I set a timer for being on the computer because it is distracting but it is the ability to multitask that has disappeared.

I have e-mails from long ago, never got written.

Time is elusive. I move slow, I think slower.

[SallyC]

I hear you, Cyn. The difference is, I like it that way. No hurry hurry, anymore!!

Of course, you youngsters still have fish to fry and oats to sow.

Feel better soon..

[legzzalot]

Originally Posted by Aarcyn

Where does it go?

I used to be able to get ready, clothes and minimum make-up in about 20 minutes or even less if I needed to get out the door.

Now, an hour is necessary. Time is elusive. I move slow, I think slower.

You know those little gnomes that sneak into your house in the middle of the night to steal your socks? The ones that leave the match behind just to prove they were there?

I think they have been sneaking into my house during the day stealing my minutes too! I think it is part of their gang initiation process for the new gnomes.

When I woke up at 3 am this morning, I decided to see if I could catch them in the ac...but they are just too sneaky! I decided to check my email, and wouldn't you know those little guys snuck in here undetected and stole a whole hour!?!?

[Judy2]

Gee legzzzzz......I wonder if they're a branch of the roaming gnomes? They spend time around here too. It takes forever to do the simplest things, like getting dressed. By the time that's done, dog taken care of and food made, a couple hours have gone by and I'm exhausted! Where does the time go?