Neuro appointment - vent

[Spydre]

I've waited a couple of days after the appointment to post this, in hopes that I would see things better. I guess my neuro was having a bad day, or well, I don't know what. Back when I saw her in May for nerve pain (which was a new symptom for me, and was the result of a flare) she didn't seem to happy about the visit. But it was a clinical flare, and we made changes to my treatment plan at the time. Next time I saw her to establish my treatment with Tysabri she was fine. This time, there is a sheet that they ask about the symptoms, and anything that you want to speak with the doctor about, I had listed muscle spasms. I had just seen my medical doctor Friday (this was Monday) and my medical doctor felt that the muscle spasms were caused by the MS, not by the fibromyalgia (which I had begun to suspect). She looked at the sheet and said, "More complaints." Okay, fine. I told her that my pcp said that they weren't from the fibromyalgia and her reply was "They all say that". But she did give me baclofen (a baby dose), which I asked for. She didn't even examine the areas that I'm having the muscle spasms in, and even though it's more than one area, hubby popped up with "maybe she just pulled a muscle" - despite the fact that it's been going on in my back and down my leg for the last month and it had me using a cane for five days. The next question I asked her I only asked her because I knew one of her other patients was getting his Vitamin D monitored very closely by her, and he was on a megadose. So I asked her if I should be worried about my Vitamin D levels, and she said to talk to my pcp about it. Okay, that's not exactly consistent patient to patient, but whatever.

The next question, I only asked her about because I got a twitch in the car on the way over. I've had twitches for quite some time - I just wanted to know what it was. She said it was just a general myoclonus and not to worry about it, and then she looked at my med list and said, "It's probably because you are on so many medications. I don't see how you can function with this many medications in your system. Since the only one that I prescribe is the amitryptilene, let's start dropping the dose on that by 1 pill a week." Now my dose had just gotten raised to 100 mg in May because of the nerve pain that I've been having, and the night before this appointment, I had the worst bout of nerve pain that I've had since my flare ended in June. Then my lovely husband popped up out of nowhere with the question about are some of these symptoms going to be permanent. You know, I know which of my symptoms aren't going to go away by now after three and a half years. This has been a bad freaking month, with both a flare and back to back UTI's.

I don't bother asking her about symptoms that aren't going away, like the weakness in my left hand, the cramping in my left hand, the fact that if I try carrying something in my left hand while my arm is down, it's too weak and I can't do it, I have to have my arm up. Yeah, the nerve pain is new, but it hasn't had time to repair yet, but that's a frequent daily symptom as well.

The doctor seemed as if my physical symptoms weren't important to her, just my clinical neurologic findings - which are fairly decent. Left sided weakness, some problems with keeping my left foot up on the walk on your heels. My walk speed was fine, but I told her it's not a sustainable speed. Heck, this time she didn't even examine my eyes.

Hubby seems to think that when I go in there, I expect a pill for everything, which isn't true. He also thinks that since the amitryptilene isn't taking care of all of my nerve pain that there's no harm in lowering the dose. The neuro thinks I'm on too many meds, but really, there aren't any that I can reasonably get rid of. The psych meds are what I'm on the most of, but they are keeping me semi stable right now, which I risk disrupting if I change. The other ones can't be eliminated. She seemed to think I must sleep a lot, but generally I only sleep 10 hours out of a day, as opposed to 6 - 8 hours, which really isn't that bad, especially considering I have MS. She's really going to think I'm overmedicated even more so when I go back to her, as I'm probably going to have an added beta blocker by that time - my blood pressure is fine, but I have episodes of tachycardia that my pcp thinks are caused by a mitral valve and tricuspid valve prolapse. Well, we know I have the prolapses, and my pcp thinks that's the cause of the tachycardia.

She ordered a liver check since I just started the Tysabri, gave me the baclofen and that was it. I don't want a pill for every little thing - although I'm starting to think PT for my left hand wouldn't be out of line. I'm on pain killers as needed because of the fibromyalgia, and I can't take anti-inflammatories anymore. Yeah, I have problems with anxiety, so I have Klonopin, but before last week, I hadn't taken it in over a month.

[Seasha]

Hey Spydre,

Sorry you're having a bad time of it and hope things turn around for you. Have you considered getting a new neuro? Just asking... In the course of my disease, I've been to 5! #1-3 were useless. #4 was great, but moved and #5 is finally listening and concerned, takes lots of time with me and nothing is dismissed.

IDK, but it seems like this neuro had too many patients and just wanted to run thru as fast as possible? To say to you "more conplaints" sound unprofessional and simply rude!

Hope you see better days ahead. Take care of yourself!

[isamadjul]

Don't feel bad

I have a friend who has MS and another couple of medical problems and he takes 22meds a day. I would see about a new Neuro. Doesn't sound like this one wants to listen to your concerns all the time.

It shouldn't matter if your 1 of 1000 patients when your in the office with the Doc your the patient that matters. Your the one that counts!

isamadjul
(allyson)

[justacowgirl]

I have to agree. No matter what the reason.. you are paying the neuro for his time and expertise. If he were a plumber you wouldn't pay. At least I wouldn't.

We are too intimidated sometimes because we think the docs know it all. They don't.

Get a new doc.

j

[Bob698]

I would try to see the big picture.
Neuro's are concerned with what's going on between our ears and in our spinal collumns. Its why I've posted in the past that to me, MS is really two dieases. There's the damage to our nervous systems (what the Neuros deal with) and then how it effects the rest of the body (what I call secondary symtoms).

In reading your post, it sounds like your Neuro isn't happy about all the meds you're taking. Again, looking at the big picture, I think your Neuro is trying to tell you that you can't live on pills.

They might not be right, but sometimes it pays to listen to other people.

I did the Vit D mega dose trial. It took over two months to feel anything (and those effects were pretty vague). It was minimal effect while putting me at more risk (as I found out later). My new GP wasn't exactly thrilled I was taking 50,000 IU a week. In other words, it ain't all its cracked up to be.

[Spydre]

I would try to see the big picture.
Neuro's are concerned with what's going on between our ears and in our spinal collumns. Its why I've posted in the past that to me, MS is really two dieases. There's the damage to our nervous systems (what the Neuros deal with) and then how it effects the rest of the body (what I call secondary symtoms).

In reading your post, it sounds like your Neuro isn't happy about all the meds you're taking. Again, looking at the big picture, I think your Neuro is trying to tell you that you can't live on pills.

They might not be right, but sometimes it pays to listen to other people.

I did the Vit D mega dose trial. It took over two months to feel anything (and those effects were pretty vague). It was minimal effect while putting me at more risk (as I found out later). My new GP wasn't exactly thrilled I was taking 50,000 IU a week. In other words, it ain't all its cracked up to be.

Five of my medications are to control my mood. One of them is Klonopin, which is taken rarely, but I'm just getting to the point after a four year battle where my mood is somewhat stable again, not factoring in situational depression, which has sort of hit me hard this year. The rest of my 13 medications (not counting my multivitamin and calcium supplement) aren't really negotiable. I'm on two anticonvulsants to control seizures (which are not controlled on one med alone), cholesterol medication, a proton pump inhibitor which is required as my GERD is so advanced due to be untreated for three years a precancerous condition has formed in my esophagus, a med for restless legs (which my husband will attest to the need for that - without it, I wake him up, which is almost impossible), the amitryptilene for my nerve pain - it cuts it down, but does not eliminate it - baclofen for muscle spasms, and Fioricet for migraines and fibromyalgia pain that I take rarely. My primary disabilities are the bipolar disorder, the epilepsy, and the fibromyalgia, and they need to be treated.

Truthfully, as far as Vitamin D goes, although I once tested low for it, I believe I'm probably getting enough with my multivitamin and calcium supplement, I just want to make sure.

Unfortunately, getting another doctor at this point isn't an option. The only MS specialists in the area are at the two medical schools. The one I see is associated with Barnes Hospital (Washington University), a public hospital that takes medicaid in all of its clinics. The other medical school is associated with it's own hospital, ST. Louis University Hospital, run by Tenant Health Care. Their medicaid coverage is spotty at best, and their doctors do not take Medicaid. They do take Medicare, but I already see two doctors (my pcp and my psychiatrist) that are Medicare only coverage, and I can't afford to add a third to that list. As it was, I had to search on my own to find this doctor, as the neuro that diagnosed me only worked with SLU. I had to get his office of to work with me on getting referred to Wash U.