Thursday, July 9, 2009

A Visit to the MS Clinic

Skip had a couple of appointments at the MS Clinic today. The clinic is at a local hospital. It's held once a week and brings together a lot of providers in one place, to make it easier for those with MS to see any they need. They have two neurologists, a nurse practitioner, physical and occupational therapists, a psychologist, a psychiatrist and a social worker. They also can arrange various consults and bring in folks who can provide fittings for braces and wheelchairs. Skip has had 3 wheelchairs, 3 braces and a variety of other things taken care of through the clinic bringing the right specialists to their offices. They even have people who have provided a pool of money to help defray costs for expensive equipment; we got a nice check from them when we got our modified Honda Element. The waiting room is an active place when the MS clinic is going on. Volunteers with MS act as hosts and drug companies always bring in coffee and goodies for the crowd. It can be a challenge to navigate around all the wheelchairs in the waiting room! Today, we were joined by a seeing-eye dog for one MS patient.

This was a semi-annual visit, which has been the frequency of visits for a number of years. I hadn't been in a while. Skip's aide took her to the last 2 or 3 appointments. I wanted to go this time because I was interested in sounding out the neurologist on any potential treatments for Skip's growing fatigue and hand weakness. Turns out we were scheduled to see the nurse practioner other than the neuro. I had never met her before; she had joined the clinic since the last time I was there. She clearly specializes in MS care. It was a great visit. I'd guess we spent between 45 minutes and an hour with her, something unheard of for any prior neuro visits.

She started by checking in on Skip's perception of her MS and its progress. We moved on to reviewing her drugs, including her current use of Copaxone and prior use of cytoxan. We then began discussing other treatment options, including methotrexate. She described the treatment, how it's been indicated as useful for hand weakness, possible side effects, the need to establish blood and liver baseline measures in advance of the treatment, the need for monthly testing of blood/liver in the early stages of use. Also, since methotrexate can impact the liver, it's important to minimize the use of pain relievers like tylenol/advil/aleve and alcohol intake (not an issue for Skip, I can't remember the last time she had a drink). Skip decided to begin methotrexate, assuming initial blood tests look okay, and stop Copaxone. Copaxone can be used in conjunction with methotrexate, it's just that the Copaxone is probably doing her no good, so makes sense to stop. The nurse practitioner then concluded the visit by doing some evaluation of Skip's hands, arms, shoulder flexibility (she's having some shoulder pain) and the like.

Then we saw the physical therapist to discuss her shoulder pain, an ankle rolling over (perhaps needing a brace?), hand and trunk weakness. As a result of this PT visit, she's going to have a referral to a physiatrist (doctor who specializes in rehabilitation) to see about having a botox injection in the ankle that's rolling to loosen up the muscles enough to stop the roll. She'll get a PT referral for home visits to set up an exercise program that Skip's aide and I can help her with to work on the hands and trunk. The physical therapist also recommended a pulley set-up that hangs off a door to help give Skip some range of motion exercises for her shoulder.

We then headed over to the hospital's lab to have the blood taken that's required before starting methotrexate and we were done with the visit. Got there about 2:30 and left just before 5.

It was a bit early for dinner, but while we were out, we stopped for a mocha frappucino for Skip at Starbucks and then a pizza to bring home for dinner. Got home, let the two pups out of their crate, had dinner and settled in for the evening.

I'm hopeful the methotrexate will either provide modest improvements to Skip's hands or, at least, give her some stability to stop the slow, inexorable downward progression. I expect she'll be able to start it right after we return home from our vacation in Maine at the end of this month.

A final caveat: everything I said about methotrexate and Copaxone is my recollection and understanding from the conversation. I easily could have heard or remembered something incorrectly.


Rain said...

You know, MS was just another disease before I met Herrad. After reading her posts I've learned so much about what a person with the disease endures and feels...when I discoverd you, Cranky, I saw the other side, the person who cares for the patient (I hate that word, sorry), the person who has to deal with the nitty gritty and all the administration's really been a learning experience and a heartfelt one too. How wonderful that you have the MS Clinic...I think that is so great, never thought Botox could be used to help...anyway, my jumbled words aside...great post today.

Diane J Standiford said...

Wow, wish SEATTLE had a place like that clinic. You guys are lucky. What a great day and Starbucks---woo hoo!!

Cranky said...

Rain - thanks for your compliment. As I've said in an earlier post, blogging has been a great experience for me, too.

Funny how Botox has an actual use other than smoothing the wrinkles of the vain!

Diane - we were living in Boston when Skip was first diagnosed and went to a neurologist at Mass General Hospital. He was always at least an hour late for his appts and spent only a few minutes with us. Never once did he ask, how are you coping with the changes in life this disease is prompting?

When we moved to a suburb west of Boston and found this clinic (through an article in the local paper), we were delighted.

Skip loves Starbucks. She is easy to spoil. :-)

Lisa Emrich said...

I really enjoy seeing the neuro nurse practitioner. Our appointments are never rushed and there is always time for any further questions. Sometimes I'll just ask her opinions on new treatments in trial or whatnot.

BTW, I use methotrexate for rheumatoid arthritis. It has worked well for me for the RA, but I haven't really noticed any extra benefit for the MS. But then again, how would I know?

I take the highest oral dose which is 25mg once a week. Haven't had any issues with side-effects. But I did try skipping a dose to see if I noticed any difference and the strong answer was - don't do that again!!

I hope that it works well for Skip and her hands.

Cranky said...

Lisa - thanks for your note and info on your experience with methotrexate. Skip is going to go with a low dose via subcutaneous injection. The NP suggested the oral version could cause stomach upset (or other stomach issues, a bit fuzzy on the details now).

I'm now a big fan of going to the NP instead of neuro. She gave so much more time and attention than we'd seen otherwise.

steve said...

I can't remember the last time I left a doctor's visit feeling any better then when I arrived. Each is a reaffirmation: yep, you're still screwed.

Cranky said...

Steve - that was pretty much the way I felt when leaving the neurologist's office. With the nurse practitioner, I still felt that there wasn't much prospect for stability (let alone improvement), but felt much more heard and engaged than in our short visits with the neurologist.