Weekly Vets Muster on the MS deck, Jan 09 2011

[gomer]

Weekly Muster on the mess deck

All veterans, active duty and family are ALL welcome here. As veterans we have some different situations and issues than most civilian MSers. We deal with the VA and some of us get our medical care thru VA medical Centers, issues of getting help with disability and pensions etc.

Please......... Drop in and say HI at least once per muster. We want to know you are doing OK, hope better than just OK. With REGULAR musters we can get to know our fellow vets better and build a sense of UNITY. If you run across a fellow Vet elsewhere on MSworld, please let them know we are here so they can join us.

Hope everyone is doing well !

The VA web site..... (link below) list notice of free monthly educatinal conference calls.
http://www4.va.gov/MS/articles/Educa...ence_Calls.asp
What: Patient and Caregiver conference calls
When: Second Monday of each month
Time: 5-6pm PT, 6-7pm MT, 7-8pm CT, 8-9pm ET
How: call 1.800.767.1750, wait to hear the welcome
........ message then punch the code 43157#

If you have not done so yet, please post an intro in the thread titled "Vets Master Muster & intros". Please post only your into there so it ONLY contains your into. You cna always start a new thread for questions or other issues.

How was YOUR week?

Anything new comming up Soon? at the VA or elsewhere? I get my MS care at the VA but use my medicare for my other health care needs.

If you have not already done so please how about a recap of your 2010 year and any plans or goals for 2011. Lets make this the biggest and best muster.

Gomer

[WACVet]

Still here....found premedication, baclofen, arthritis strength tylenol, and warming up the injection site, does help! Still not happy with having to stick a needle in me, but I AM doing it!
Hope everyone has a wonderful week!

[Ga dancer]

Snowed in here in "sunny" Atlanta. Weather forecast does not indicate any melting, and more snow scheduled Thursday. We do not have much in the way of snow removal, a couple of snow plows for the interstates but no way out of our subdivisions to get there. We don't have snow shovels either.

I fell indoors yesterday - can't pick up my feet well - so I don't go out on the ice and snow anymore anyway.

The freezing rain and ice are on the way, but we are prepared. Gas fireplace, generator and plenty of food.

[epona]

Hey There

Sorry I've not been on in a while. I have been busy in my new job and I am so tired after work, I don't do much. I also use my weekends to sleep or veg on the couch, but not necessarily on the computer since I work on one all week.

Trying to decide if I should start on any medication. I've been counseled by the neuro and an NP who used to work in an MS clinic that I really should be on something. I am just not comfortable with the idea and the fact that the VA here only offers one of the drugs. I keep avoiding thinking about it, to be honest.

I got a new profile for the National Guard until my retirement that say I am not to do PT anymore, especially a PT test. The one I had to take in October left me a mess. I was miserable for nearly a week. Of course that put me on the MEB list, but I should retire long before I get to that board. I am supposed to retire 11/11. I hope nothing holds that up or I will be very unhappy.

Other than that, I got a Wii Fit Plus for Christmas. The balance exercises are a real challenge, but I do them. It is pretty mild exercise, but could be harder so I can progress. I am really enjoying it, since it feels like you are playing. Some of the "sport games" are actually good exercise too. I get really involved in the swordfighting and find myself having to start across the room as I get swinging and walking forward like a mad-woman! Great for stress relief, I tell you. Nothing like beating a toon up until they fall off a platform!

Besides all that, I found out about a week before Christmas that my mother has thyroid cancer and it is an aggressive form. She will be having it removed this month. I was very stressed over hearing that and not getting much information out of my family about the surgery. My father had the dates all wrong and told me it was two days before Christmas and I spent all day waiting for a call from him. He never did and I found out by calling the hospital that she only had a biopsy that day. I ended up having a 5 day migraine that involved my going to the emergency room to stop it. NOT FUN!

I am unhappy about my winter weight gain. I didn't overindulge, I was very careful, but not cycling 17 miles a day with half of that climbing 830 feet has made me fat. I gained 18 pounds since mid-november. My neuro is finally taking me off the Depakote for the migraines since that is really the weight gain problem. I will be starting Protryptalin soon. Hopefully it works and I don't gain anymore weight. The doc said the average weight gain of Depakote is 100 lbs! I've gained 30 on it in the last two years. Imagine if I wasn't on the bicycle all summer.

So, enough ranting. I hope everyone had a great holiday. I plan on losing weight, as probably 90% of the population. I need to get on that bicycle as soon as the snow melts too.

A late Happy Holidays to all!

[Bob698]

I was kinda wonderin' what happened to yas.
Look, go with the meds. Yes, they all stink in one form or another. There are trade offs and you'll hate the first three months or so.
Still, I was progressing at a pretty steady clip until I started on a CRAB. While I haven't re-gained much at least the progression has stopped.
Its worth it.
Meanwhile, have you checked around for one of those stationary bike adaptors? Just clamp it to your bike during the winter and keep riding.

[Dulcinea714]

This week

Tomorrow is snowday #3 for the week. Daughter is enjoying her time off.

I had physical therapy and psych appts yesterday, but psych cancelled appt. Think she must live out on one of those rural country roads and TN just can't cope with snow. Today was dental appt and I have another appt on Friday to get new birth control. The neuro NP thinks my migraines are caused by the depo-provera so I have to go on something without estrogen. Next week is opthalmology and field vision tests; my vision hasn't gotten any better.

I have been reading my medical records in preparation for my hearing with the Merit System Protection Board on my disability retirement. I discovered that if I have another relapse before April they will try to put me on tysabri. That was a shock; motivation to keep me focused, to stay as stress-free as possible and to listen to my body when it says stop.

I got new windows in the house over the weekend; those 30+ year old windows had to go. A big difference. I can lower the thermostat to 64 or 66 and still feel comfortable. I got the gas bill and billing period ended last week, so next month's bill should be significantly lower.

Hope everyone is having a good week and staying safe and warm.

[Bob698]

Yeah, I've got Vision Clinic next week then a Vis Field for the 22nd of Feb.
I wish I was looking forward to it but I really hate getting my eyes dialated. Someone must have said something because I was originally set up to do the whole deal in one day which meant arrive at 10 am and get cut loose around after 4 pm (try asking a vol. driver if they feel like sitting in a waiting room that long).

[Scooter24]

lots of appointments this month, saw my new GP yesterday, he was great compared to the old one that apparently has been dismissed for complaints, the new dr agreed that my thyroid level is still too high and agreed to doubling dose of med for it and will recheck in 6 wks, the other dr said it was still high but "close enough" , got a copy of ltr VA Nuero wrote for my disability request, he found more things in my file than I did and has 10 things listed that show signs of MS dating back to late 70's. I would think this should help my case any thoughts?
get tested for walk aid next week and full MRI the week after. the new dr has also requested mri of shoulder at the same time to find out what is wrong rather than just put me on 800mg of Ibuprofrn 3 times a day.
PVA sent me the book of forms to fill out, just about have them finished , had to talk to infusion nurse about some of the questions and what to put in those areas. She is instrumental at the VA getting people thru the process and is very knowledgable on the forms and was the one that told me to put in for it and why after reading my records.
Does the dr's letter and the fact that I am on SSDI already help my chances at all? I have been out since 87.
still haven't gotten my ampyra thru them yet, seems no better than insurance co for speed on that, I ran out 2 weeks ago and it is killing me without it. Got a call from Caremark late yesterday saying it would be shipped then if they could get billing info from the VA. I will drive out and pick it up today if it arrives. It's been a month since I sa the Nuero and he ordered it.

[gomer]

Scooter....WHAT forms did the PVA send you to fill out?

I got some bookleets, a pin, bumper sticker, memership card etc but FORMS?

I go for a BAER test later this month at the VA and the next day start with a MRI then when I am done with that I see the NEURO. I hope my MRI is good and can stay on Copaxone. I do not want to go on the FLU giving shots, if I can avoid them.

I am doing a little better more stable since stoping the STATIN and the new AFOs are an improvement as well. They day of my BAER test marks exactly ONE YEAR to the day I was formally given the RRMS Dx (long standing) and hope the MS neuro does nto declare me SP instead, which he fears I am in in the early stage of crossing over into.

DocGomer Doctor of, Been There, Done That.

[Scooter24]

I guess what you would call the basic claim forms as I am just starting the trip, VA form 21-4502,26-4555,21-526,21-4142,21-22. They largest one is the 526 it asks everything in the world possible.

So far this PVA rep has been really good and from what the infusion nurse tells me he stays on top of the cases and lets you know the status every month.

Not sure how much I will have to go thru as far as tests as I was dx prior to applying and the Nuero has looked at my previous MRI and agreed with the dx and treatment regiment. sounds like you all have alot better handle on this stuff than I do, but I have gone to 2 support groups there and have picked up a lot of tips from them already. The local hospital is a MS center of Excellence so don't know ifthey do the testing there or if I will have to go elsewhere for it.