A Complete Waste Of Time
I had my quarterly visit with my neurologist yesterday and as usual, it was a complete waste of time. Each visit is the same and it goes something like this
MD: How are you feeling?
Me: Same as usual. Mostly good. Fatigue is the same and I still get shooting pains everywhere.
MD: How is your left leg? Still weak?
Me: It's the same as it's been, a little more tired and numb sometimes. Nothing new.
We virtually have this same dialogue verbatim every few months. I know what he's going to say even before he says it. I believe it's this way because doctors don't really know much of anything about multiple sclerosis. They always tell you what they think may be happening but they never really know. We all know M.S. is a mysterious disease, that's one of the reasons there is no cure. Why can't they stop pretending like they know something and just admit they don't. However, when it comes to common symptoms and such, I feel that they should know enough to give me some answers.
This visit was just a little bit different than all the others because I actually had a question about a phenomenon that is happening and was looking for answers, or at least some knowledge and guidance...silly me to think I'd get it.
A few weeks ago I noticed some dents forming on my upper thighs, butt and back of my arms. They are very noticible to me. I had my husband take a look at them and he probably wouldn't have noticed them if I hadn't pointed them out and nobody else thinks they're noticible either, but that doesn't change the fact that they are there and they seem bad to me. I had heard and read that this was a side effect of the Copaxone I inject myself with daily and, because all the dents are at injection sites it is a no-brainer. The doctor looked at them and said he didn't really know what could be causing them. Come on! It's all over the literature and all over the internet! How can you look me in the face and tell me you don't know? He suggested I call the drug manufacturer and inquire there. There are only 4 drugs that M.S. patients can use. How can he not be completely familiar with all 4 of them? Is this too much to ask? Needless to say, I'm very frustrated.
I'm scared about this problem with my medication. I'm also scared because I stopped taking it. There are no other meds I can use. The Betaseron almost killed me and I can't use Avonex or Rebif either. I don't know what else to do. As if we don't have enough things to worry about with this disease, now we have to worry about the treatment too.
MD: How are you feeling?
Me: Same as usual. Mostly good. Fatigue is the same and I still get shooting pains everywhere.
MD: How is your left leg? Still weak?
Me: It's the same as it's been, a little more tired and numb sometimes. Nothing new.
We virtually have this same dialogue verbatim every few months. I know what he's going to say even before he says it. I believe it's this way because doctors don't really know much of anything about multiple sclerosis. They always tell you what they think may be happening but they never really know. We all know M.S. is a mysterious disease, that's one of the reasons there is no cure. Why can't they stop pretending like they know something and just admit they don't. However, when it comes to common symptoms and such, I feel that they should know enough to give me some answers.
This visit was just a little bit different than all the others because I actually had a question about a phenomenon that is happening and was looking for answers, or at least some knowledge and guidance...silly me to think I'd get it.
A few weeks ago I noticed some dents forming on my upper thighs, butt and back of my arms. They are very noticible to me. I had my husband take a look at them and he probably wouldn't have noticed them if I hadn't pointed them out and nobody else thinks they're noticible either, but that doesn't change the fact that they are there and they seem bad to me. I had heard and read that this was a side effect of the Copaxone I inject myself with daily and, because all the dents are at injection sites it is a no-brainer. The doctor looked at them and said he didn't really know what could be causing them. Come on! It's all over the literature and all over the internet! How can you look me in the face and tell me you don't know? He suggested I call the drug manufacturer and inquire there. There are only 4 drugs that M.S. patients can use. How can he not be completely familiar with all 4 of them? Is this too much to ask? Needless to say, I'm very frustrated.
I'm scared about this problem with my medication. I'm also scared because I stopped taking it. There are no other meds I can use. The Betaseron almost killed me and I can't use Avonex or Rebif either. I don't know what else to do. As if we don't have enough things to worry about with this disease, now we have to worry about the treatment too.
posted by Miss Chris | 9:30 AM
10 Comments:
gulp...
I feel your pain (literally!)
If you're injecting subcutaneously and you dont hit the right region, between the skin and the muscle, it hurts.
It also raises little bumps; hard nodules where the medication just pools between the muscle fibers; and then takes its own damn sweet time to be absorbed by the lymphatic system.
I suspect that you, with all your working out and exercising, don't have enough flab.
I have the same problem. After I had my last attack in 1997 I proceeded to go from 220 pounds (100 kilos) down to 175 pounds (about 80 kilos) and I lost all that body, or subcatenous, fat.
I've never had any fat on my mighty thews (as my ex-wife referred to them, :-) and I like them that way just fine, thank you very much.
But that has left me with very few places to inject.
I find the upper arm (the slim area between the biceps and the triseps that I can actually reach with the injector) works best for me.
But its always a bitch having half the injectable areas. And I'm perpetually in a quandary as to which is worse; eating enough to keep the med injection sites or slimming down to move more easily.
I have to use alcohol wipes before every injection and after as well.
Since I'm really a big chicken I also lubricate my ego/super-ego/id with a beer or a glass of wine, (and screw what that will do to the drug's effectiveness by keeping my liver busy with the alcohol.)
If you're careful and inject only into the slender layer of fat, you should notice that the nodules won't re-appear.
If your drug in supposed to be intra-muscular, you just have to jab harder to stay out of the fat layer.
And your comments about the doctor are always going to be right on unless he himself has to self-medicate.
That's why I wish they'd come up with an inhalable form of medication.
Hello,
Found your sight from Suzy's blog at "Bliss" and enjoying the read! Thank you...
Copaxone and Avonex both almost "kilt" me...ok, maybe an overdramatization, but that's how it felt. I just started the Tysabri infusions last month...so far I'm still alive. LOL
Just a thought...
Linda D. in Seattle
Why don't you try Tsyabri? After all, it's just one infusion a month or every six weeks?
I have heard of the "dents" and when I asked my neuro about it when we were discussing which CRAB drug for me to go on, he said: "It's a vanity issue for most women and an important one, no doubt!" (He was not being sarcastic either) He did point out that all the CRAB drugs had their pros and cons.
I decided to utilize my "vanity issue" and picked Betaseron. Oh silly me! I'd rather have the flu every other day for several months than dents!
Imagine that. Even I think it's a stoopid reason to pick a CRAB drug but that was my reason.
*blush*
And yes your doctor should have known about the reasons behind it. Frustrating, isn't it?
I'm sorry- I'd find SOMETHING to be on because you've no doubt read about the silent progression and you're doing so well now. Karate! Whoa!
And Charles is probably right- you probably don't have enough flab.
Who wants flab tho? LOL.
I'm sorry, Miss Chris!
Oh- did your neuro make a suggestion as to what to do?
Ahhh I am so glad that I'm on an Avonex vacation! I've not read about the Copaxone doing the skin denting thing. MY MIL called today to tell me that NBC (I think it was NBC) reported on some sort of MS treatment with a pill? I'll have to check into that one. I don't stay on top of MS stuff because of all the 'other' stuff I have to deal with. Maybe I should do better on that?
Thanks for visiting my blog the other day. I can so relate to your MS comments about the Dr's. I wish it were better too. =)
I may be completely off base here, but perhaps it's time to seek out another doctor. Have you looked into natural medicine at all? I don't personally know if that is of help with MS but it helps so many other things that it might be worth some research.
I hope you get the answers you're looking for.
I agree with BBM ... time for a new Neuro. I rarely visit mine except for when there is trouble. Have not seen him in nearly 2 years now.
Since I'm still new to all this, I haven't really had any frustrating experiences with my neuro...yet! I'm sure I will, though.
I may be wrong, but I think the dents are a side effect from just about any shot you have to take everyday. My husband is a type 1 diabetic. He's on the pump now, and has been for several years, but before that, he'd have to take at least 2 shots of insulin every day. He had dents in his skin.
You have to decide which is more important in the end.. a few bumps, or having this stupid damn disease slowed down. Ten years from now, if you stay off the meds, you may have perfect skin, but you could be in a wheelchair! Think long and hard about it. Think about what's really important to you.
Just my $.02!
Hang in there, I'm sure you'll decide what's best for you!!
Oh yeah. My dad is an MS specialist (for about 20 years it was all he did). His commentary about the general level of MS knowledge among neurologists was...pungent. We won't even discuss what he thought of most internists or FP's abilities to deal with MS.
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