Frustrated

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Frustrated

Postby StaceyB » Fri May 11, 2012 12:30 pm

Feeling a little frustrated, but I'm sure many would rather change places with me, so I guess I shouldn't complain much. I was diagnosed in October of 2010, 3 months after my first clinical episode (I'm 48 now, not that it matters lol). It was a pretty severe episode which lasted about 4 months. I would have really bad muscle spasms on the right side of my body, where the muscles would contract for periods of 30 seconds to a minute at a time up to 50 times an hour by the time we found a medication that would stop it. Initially it started with just tingling in my right leg then over days progressed into spasms when I would become active then within 2 weeks they were random and would start anytime. It's funny because once I went to sleep I didn't experience any that I know of but finally we found a drug that stopped them entirely...took 2 months, and the magic drug was tegretol. After a couple of months I was able to go off the drug and the spasms were gone. I then had a brain MRI that showed the glowing lesion that was causing the issue followed by a spinal tap...all tests consistent with MS. With that I was given a tentative diagnosis of MS and they recommended drug therapy. I decided to wait until a 2nd MRI was done 6 months later. I had 7 new lesions but none on my spinal cord. I then started on Rebif. My doctor moved out of town so I started seeing her partner who was the senior of the 2 and she handles a lot of MS cases. She did another MRI that showed 3 new lesions. She wants to do one more at the end of the year because she doesn't know if the new lesions came before or after I started on the Rebif. In a nutshell that's my case.

So why the frustration? Well, I sometimes ask myself if it is really MS. I don't know what else could cause lesions, but we really haven't discussed anything else. My doc says that I seem to have a very mild case of MS and that I am really lucky. If it is really mild do I need to be on the medication...of course I don't want my brain to turn to swiss cheese, but it is expensive and I hate needles. Fortunately Rebif has an excellent co-pay assistance program and during the 14 months I've been on the drug, I've only had to pay $100 myself. However, I'm sure this assistance plan won't last forever.

I don't seem to have a lot of MS symptoms...they always get brushed off as something else. I was describing some intermittent feelings I get in my legs, mostly just my right leg, and the doc seems to think it is restless leg syndrome. I more recently have started getting a little numbness in my toes but nothing that hampers me. Also, I sometimes feel a numbness in my lips and tingling in my fingers. Sometimes I get pain in and behind my eyes. All of the tingling and numbness is so intermittent never lasting for very long...the longest period was 2 days and just in my toes. I get more frequent headaches but part of that I think is from the Rebif. I don't think my doctors look at everything as a whole though. I was the poster child for healthy people until July 2010. I never got sick...I think I missed 2 days of work due to illness my whole life. Since 2010 I had the spasms resulting in an MS diagnosis, bilateral frozen shoulder, a horrible urinary tract infection (which I have never had in my life and never want again) and two ovarian cysts...one of which I'm still dealing with. I keep wondering what's next.

My husbands company just started this new program called Best Doctors where by request they will have a panel of doctors review all your medical history, charts and tests...even ordering new ones if they think they should be done and give you their opinion. The service is free...you just have to cover the costs of any medical tests they request. It is sort of like a second opinion. Since I've met my out of pocket max for insurance this year, I have thought about doing this. I just don't want to step on my doctor's toes, but they shouldn't get offended with a second opinion. The doctors on the panel are selected by the vote of doctors...they don't pay to get on the panel, so it is supposed to be comprised of really good doctors. They would match me to one in my area. I live in a rural area, so it would be nice to have a higher caliber doctor look at it. I like my doctor, and she seems good, but I don't think it would hurt for me to talk to another just to see if they concur.

Anyhow that's all...just needed to vent a little.
StaceyB
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Re: Frustrated

Postby Scott1 » Fri May 11, 2012 3:26 pm

Hi Stacey,

I'd say you are a nice, polite person to be around. This time you need to put your angry hat on! Don't worry about stepping on your doctors toes - jump and down on them instead.
There is only one question you should always ask when you seek advice - "is this peson helping me". If the answer is "no" then seek elsewhere. Whilst you have the capacity to search and learn do it. Otherwise you will become your own victim.
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Scott1
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