New Neuro...I'm Not Thrilled
Today was my first visit with my new neurologist. It could have gone better. I think it's safe to say that he wasn't happy with me, but I say that's his problem.
First I saw the physician's assistant. I didn't click with her right off the bat but as she got to know me more I think we had a pretty good repoir. Just different personalities. She's a very hurried type of person but mellowed out after a few minutes. I went over my history with her and current issues and then I lowered the boom. She was surprised that I'm currently not on any meds but, after I explained my problems with them she was pretty good about it. She told me they have a naturopathic doctor in their office and set me up to see him. I told her I was very open to the idea of naturopathic medicine. I could tell though that she wasn't completely sure she should let me leave the office knowing that I wasn't on any meds. This was confirmed when she excused herself for a minute and came back with the doctor.
He and I will not be getting along. He was cordial to me but in a very condecending way, I thought. He proceeded to tell me how dangerous it is for me to be off the meds and tried to scare me into going back on them. I told him it wasn't by choice that I was off meds, just that they had such bad side effects for me. He said he was very uncomfortable with this and that of course he couldn't "force" me to take the drugs.
We ended up compromising and I think it's a very fair compromise. I'll have an MRI done in the next couple weeks and if things look about the same, he'll relax a bit on the medication issue but, if there are more lesions, we need to seriously talk about trying something new.
I can certainly appreciate his views on medication. I never thought I'd be one of those people not on a drug but my quality of life is very important to me. The drugs like Betareron, Avonex and Rebif cause me such pain and illness, not to mention make my white blood count plummet (which can cause serious illness) that I can barely function in daily life. The Copaxone caused nearly disfiguring areas. If my disease isn't progressing why put myself through that? If the MRI shows progression...I'll have some more research to do.
First I saw the physician's assistant. I didn't click with her right off the bat but as she got to know me more I think we had a pretty good repoir. Just different personalities. She's a very hurried type of person but mellowed out after a few minutes. I went over my history with her and current issues and then I lowered the boom. She was surprised that I'm currently not on any meds but, after I explained my problems with them she was pretty good about it. She told me they have a naturopathic doctor in their office and set me up to see him. I told her I was very open to the idea of naturopathic medicine. I could tell though that she wasn't completely sure she should let me leave the office knowing that I wasn't on any meds. This was confirmed when she excused herself for a minute and came back with the doctor.
He and I will not be getting along. He was cordial to me but in a very condecending way, I thought. He proceeded to tell me how dangerous it is for me to be off the meds and tried to scare me into going back on them. I told him it wasn't by choice that I was off meds, just that they had such bad side effects for me. He said he was very uncomfortable with this and that of course he couldn't "force" me to take the drugs.
We ended up compromising and I think it's a very fair compromise. I'll have an MRI done in the next couple weeks and if things look about the same, he'll relax a bit on the medication issue but, if there are more lesions, we need to seriously talk about trying something new.
I can certainly appreciate his views on medication. I never thought I'd be one of those people not on a drug but my quality of life is very important to me. The drugs like Betareron, Avonex and Rebif cause me such pain and illness, not to mention make my white blood count plummet (which can cause serious illness) that I can barely function in daily life. The Copaxone caused nearly disfiguring areas. If my disease isn't progressing why put myself through that? If the MRI shows progression...I'll have some more research to do.
posted by Miss Chris | 10:40 AM
14 Comments:
I don't understand why doctors want to scare patients into taking their medications, it doesn't help. There is usually a reason for not taking, and if they stop to listen they'll figure that out. I don't think some of them really realize how medication side effects affect your life. From the sounds of it you have a good reason for going off your meds.
I hope the MRI goes well, and you start to get along better with your new doctor.
I don't get it... the naturopath was telling you to get on medication?
That makes NO sense at all...
Miss C,
Your physician missed the opportunity to form a team with you. You're obviously an intelligent woman with a potentially serious chronic disease. He might have explored your reasons for not being on meds and delved into your understanding of your disease - its potential for waxing and waning, possible complications, etc. Instead he chose (arrogance at work, certainly) to berate you. Now you're not moving in the same direction; one designed to keep you healthy, not feed his physician ego. Hope your MRI is clean as a whistle.
Doctors scribble illegible script in a dead language, shake their rattles full of pharmaceuticals, make pronouncements in arcane utterances because they just don't know.
When thinking about doctors, I always like to reflect on the statistical fact that, if they were all laid end to end, they have not done as much good for the common man as the equivalent length of sewer.
I'd make sure that your new neuro knows that he's trying to compete against a six foot length of concrete pipe and the concrete is winning.
I'd make sure because I'd tell him.
It is a difficult issue. My BF with MS and I discuss this all the time. We share the same Neuro. Our Neuro explained to us that MS was like an iceberg, and what "WE SAW" was the part above the ocean, but the real damage was done below the surface. UGH.
I'm on Betaseron and she's on Copaxone. She's been on it since Nov. and has several egg-sized lumps that won't go away. She works full-time so going on an Interferon will subject her to additional side effects. Yikes.
Like you, I had trouble with anemia but got it squared away. (for now) However my thyroid's under attack, and that's not fun! I don't know what to do either.
I'm staying on treatment for now but I do understand completely your problem. I'm sorry, I wish I could help! :-(
Brittney,
I appreciate your support. Doctors don't tend to look at illness from the patients view. They don't know what it's like because they've never had it. This MD isn't the best listener...
tineke23,
Actually it was the neuro. who said that. Not the naturopath. Sorry...I didn't write it clearly. My bad!
Tim,
I think you're right...arrogance was definitely running rampant in that exam room.
Charles,
I know we always seem to see eye to eye as far as doctors are concerned.
Myelin,
It seems like these meds are a no-win situation. Ugh is right!
Hi Chris, found you via mdmhvonpa and am de-lurking to comment for the first time. Last time I saw my neuro a year ago (I've only been 3X in 11 years), he told me all the drugs are "over-hyped, over-priced and over-prescribed" and I really appreciated that honesty! I'm on LDN myself, have been for 5 years, which is not an "approved" MS med but my neuro says that's fine, he knows about it (but they won't ever recommend it because it's not approved - I get the script from my GP). I was on Copaxone from 1998-2000 and got a lot worse during that time. MS certainly isn't caused by a deficiency in Rebif, Avonex, Copaxone or Betaseron, but they sure push them like it is! I hope you find a program that works for you.
Donna,
Boy do I appreciate your comments! Thanks for all that info. I've never heard of LDN. What is that?
There are entirely too many doctors who have no personality what-so-ever. Why is that?
I say "go for it" regarding the natural meds. You never know!
LDN is "Low Dose Naltrexone" and most of the info can be found at the website http://www.ldninfo.org as well as the Multiple Sclerosis Resouce Center's site in the UK (My fave. MS organization! So open minded!) http://www.msrc.co.uk I printed off tons of stuff and took it to my doctor and asked to try it. He let me, but not all doctors are open to trying something not officially approved. Good luck, if you want to give it a try!
Hi,
My name is Jenny and I am part of an online community called CarePlace, for people experiencing similar health related issues and their caregivers, including MS. We have recently added new MS related communities to the site.
As your blog relates to what we are doing at CarePlace, I was wondering if you might be willing to check out our site and let me know if you think it might be helpful to the people who communicate through and with you. People can join multiple communities, share experiences, check out info on medical conditions and treatments and form their own groups within the site.
We have gotten great feedback and as you know the more people in various communities the more outreach and support that happens. Our users have really liked it so far and we are adding new features all the time based on what everyone is telling us.
It’s really important to us to get feedback from people like you about the site as we develop features – the site is www.careplace.com. You can add me as a friend (jend) and let me know what you think.
Thanks in advance!
Jenny (jend)
And YOU, two, Missy Chris! I just posted a not so nice message to MDMHVONPA about his lack of postings this past week...now, you get YOURS!!!
I hope you are OK...I can't imagine your "excuse" (LOL) will include snow drifts as high as your house in Arizona, but hey...stranger things have happened!
Linda D. in Seattle
Oh Linda...my swiss cheese is with me again and I can't put too many coherant sentences together.! I'm still alive and I'll really trying to get with it regarding my posting...or lack thereof. Argh!
Look in your provider directory, and find a new quacker. I think a bad vibe means he won't be doing you any good.
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