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:

I tried physical therapy a while back. It was an exercise in futility. I was given ten PT appointments, and I went to each one faithfully. But they wouldn't let me exercise. I have had well-controlled high blood pressure for a long time. But every time I'd show up at the hospital's PT department, my BP would skyrocket. So they couldn't let me exercise at all. Twice my PCP even gave me drugs to take the morning of the PT appointment, but it didn't help.