Mariel I'm glad to share my own experiences (I'm glad you're happy to read them - I blab and blab, often too much for my own good, or the good of those around me!).

I'm sorry to read that you're dealing with 2 conditions at once. It's one thing to deal with cruddy MS, but to deal with Polycythemia Vera (I am completely ignorant to this disease/syndrome - I'll have to educate myself) as well, that takes one tough and brave soul, from what little I have read from your post (sensitivities and such). Wow.

I do hope your son can slow down for you and begin to learn how to accommodate at your pace better. I think he'll learn with time what works best for the both of you by the sounds of things.

It depends on a number of factors to be honest... what type of pay (hourly, salary, commission), State laws, country of residence, type of work, demand of job, how your job can accommodate, etc etc etc.

There's a number of things to 'factor in'. This is why I was so utterly confused.

In my case, I had already been diagnosed with MS. I had already disclosed my diagnosis to my employer as of March 5, 2008 (been employed with them since November 2001). They have both short term and long term disability through a third party insurance company. I'm a salaried worker (full time hours, 37.5 hours weekly).

So with my MS diagnosis, to get a workplace accommodation - permanent, or a change to current workplace duties or expectations of current role - I need to complete an Employee Declaration and send that to my insurance company (which I did on Friday by fax). Then I wait for them to call me back with a case number, and details. From there, I BELIEVE my doctor's office fills out their info, but what I did on my side was authorize the insurance company to go to my GP/family doctor and request as much/any medical info they wanted on me to provide for work accommodation to my employer.

I'd get in touch with your HR group for further clarification, or insurance group (if applicable), however it seems (where you say your company has said) that you've already been in touch?... what is it that they won't support in you trying to get answers/diagnosis? My insurance company supported me through short and long term disability, reporting to my employer, throughout the 'limbo' period and then up to my return to work full time after diagnosis, as well as relapses, etc.

I really hope you're able to get some help in this, it's the absolute PITS when we just want to be productive members of society within our capacity and not do ourselves in in the process.

I'm one of those that forgets to pay bills! I have so many cognitive problems that when I went before the Judge for my disability and he asked me a question about "our profession" (his words) (I was a Paralegal) whatever I said made him just stop and stare at me. I never did figure out what I said! Whatever it was proved to him that I could no longer work. And back then I was doing pretty well but now I'm so much worse.

I now have all my bills paid automatically but still have a list of when the bills are due which I check off each month. I have a large desk calendar where I write everything down and I mean everything. Especially if I need to pick my DD up from somewhere. So far I haven't forgotten her so I'm doing okay. I have a list of cleaning I need to do and mark it off when done.

I make sure to tell people when I first meet them that I have MS and many cognitive problems so they'll understand. This way when I say the wrong word(s) I can say I warned you! To look at me you'd never know I had MS and I've had it for a long time.

The funny side is when I say the wrong words it's halarious - after all if you laugh at yourself, it much more fun!

The sad side is when I forget to make dinner. Oops, sorry family. Guess that's what frozen quick prepare meals are for.

The awful side is some family members have said nasty things about my cognitive problems.

Karousel, some of the drugs we take make it even harder to think. I am taking few now,
but when I first had an MS dx I was tried on several things which made it even harder to do things. Baclofen made me run into walls, as I didn't have enough eye/body coordination to sense the walls approaching. Several anti-depressants made me more depressed because they slowed almost all functions, as well as increasing spasticity. I take tiny amounts of Klonopin and Propanalol, and these do not slow me much, or interfere much with thinking.

I just started Topiramate. I am a space cadet now. This is on top of long term, low dose clonazepam (klonopin) and the real doo dee doo medication, nabilone (which I've been taking for quite a while now as well to control my pain so I can at least work).

The medication + the disease progression into cognitive disruption is quite a cocktail.

Laura, that must be a challenge (understatement) to work while on drugs which slow you down. I worked as a teacher for 13 or 14 years while taking Meprobamate, which stopped abdominal spasticity and allowed me to work relatively pain free. But it (unknown to me) was one of the ten worst drugs for people with Porphyria, and aggravated my neurological status until I was finally dx'd with MS, and I got off Meprobamate by taking Klonopin. I had tried for a year to get off Mepro, but could not do so until the doc put me on Klonopin and said it would enable me to stop Mepro cold turkey, which was absolutely correct. Gradually I lowered the Klonopin dose. I don't think I take enough at this time to slow thinking much, if at all. But it takes the edge off spasticity, in combination with the magnesium I take for that. It also sort of soothes bad memories, which I have a lot of these days, living alone making it worse.

It was a wonder I could teach when on Meprobamate.

Do you take any magnesium? It's good for spasticity, and thus lowers pain. I was put on it by a neurologist when I was unable to take Baclofen or Zanaflex, and it worked well without side effects. It can cause diarrhea, so the neuro said to look for the one which is least causing of diarrhea. Since I started magnesium, my neurologically caused constipation has almost vanished.

Fingers crossed that as your body adjusts to the Topamax the side effects will lessen and you will feel more like yourself.

I turned the bills over to DH. It took some getting used to, but he really shines at it now. All our cards are paid off, so there was no worry there. We have the simple things like electric/phone/cable/oil to worry about. We now use our tax return for our oil bill, and the rest is just monthly stuff. DH actually understands now when I turn off the TV as I leave a room. or shut off ALL the lights when we leave. or dont stand in front of the fridge for 20 mins trying to see whats in there. Shower vs bath, and consolidate loads of laundry instead of just chucking a few things in.

Someone says "what did he say?" um...I dont know! When is your appointment? um...let me get my calendar. I used to learn at a very quick pace, and now I am doing computer graphics and ...its SLOW! I am learning how to manipulate photos so I can change the color of someone shirt, or add a row of flowers in their gardens...its HARD! I feel so ...blunted. that is a great word. blunted.

MD says what did we discuss last time? umm...no idea! its a good thing im not a liar, I would be in a world of doo doo as I cant make up stuff on the fly. I wouldnt be able to keep my story straight. My sister is a pro at lying and it amazed me at how many tiny itty bitty details of her story she can remember to pepper into the story.

im sorry...what were we talking about?

Oh I forgot, a Doc gave me a cog fog exam in the hospital last November and he said I passed with flying colors. Oh, I have the usual cog fog from age/MS/whatever, but no biggie deal.

I'm lucky so far, because I know some of you suffer greatly.

Uh oh, I'm on very few meds - Avonex, Notriptyline, Vesicare - so I'm really in for it if/when I need more meds. I have been on these meds forever, even before my cognitive started getting worse. But of course if more meds mean more cog fog, at that point I may not even care.

It just nice to know I'm not alone in my daily struggles.