OK, I’m gonna complain.
 

I haven’t seen my MS doctor in two years. It is mostly because I think it is pointless to complain to a doctor who cannot do much for a Secondary Progressive MS patient.

I was SPMS when I was diagnosed, so I haven’t been through the whole Disease Modifying Drugs challenges so many of you have been through. In fact I’ve never even been on steroids for my worsening symptoms. The only MS-related drug I take is LDN.

In the last two years I’ve lost all but a token amount of my mobility. I can stand for something like three minutes before my posture starts to droop, and I can’t stand any more. My longest walks these days are out to the car, which isn’t more than 30 feet. My walker doesn’t help very much any more.

So I was thinking that I should visit my MS doctor and tell him my long, sad list of symptoms (sniff), and tell him I want an MRI. I want steroids, or anything else he thinks might help

I’ve been a “good sport” about all this MS stuff for a long time. I need some relief!

☺

Ahh Marion, I'm sorry.:(

Gee I never thought of myself as a "good sport" but more like a
"bitter curmudgeon" whilst living through 50 years of this @%&*ing
disease.:mad:

Shortly after my DH passed away in 2004 and left me to live alone,
I decided to use a scooter in the house and outside, rather than fall,
ungracefully to the floor, after tripping over a piece of lint. Didn't use
it, so lost it.:rolleyes:

If you want to keep walking, then you have to keep walking. Your
Doc writing a script for some PT, may help. Aging is not our friend
though, so no matter what you do to keep yourself strong, we get
weaker as we age + MS = forgettaboutit!:mad:

Good luck and good wishes for you.:hug:

you guys are tough. I'm a complainer with my brain injury problems. I don't know how I would cope with what you have. hat off to the two of you. and you have every right to complain now and then. I will listen.

Marknell, things do get rough, but you do what you have to do. The human spirit is an amazing thing.

Sally, I can walk from one end of the house to the other. I do what housework I can from an old manual wheelchair, but the rest I manage to do while standing for short periods of time, and then taking a sit down break every five minutes or so. It takes me forever to get things done, but I certainly do have the time. I know that if I don't walk enough I'll lose what little stamina I do have.

Sometimes I get really tired of being "a brave little soldier".

I don't blame you

"Brave little soldier"....bah..humbug!!!!:rolleyes: :hissyfit: :(

I occasionally wonder why I even go to the neuro. I have mild MS...he told me last time to quit "counting MS symptoms on my fingers and toes."
So I ignore them unless they really scream for attention. I only see him to get refills of prescriptions and to see if they are working right or not. Otherwise, it's 3 hours out of my day that I could use to do something fun.


But you seem to have gotten worse, so I would definitely go back to the neuro to let him see your condition. There are PT appts and new meds that might ease your symptoms...

Hi Marion, I am pretty sure I'm some form of spms, but my Dr dx me as some form of rr :confused: I have been on Tysabri for 8yrs -Thank G-d..it has helped me. Hopefully one of the DMDs can help you !
Take care
Linda

I think that's so your insurance will continue to pay for your meds. A lot of them apparently won't pay if you're not rr. :icon_frown: