FINALLY!!

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Moderator: pmaxwell

FINALLY!!

Postby JeffinMI77 » Fri Feb 10, 2012 10:25 am

After two neurologists that basically told my I was crazy or that I needed to exercise I found a PM&R doctor that has treated SM and believes me. She said if it's not suppose to be there, it could be causing issues. Neither of the NL's offered any info on SM like what to do or not to do, they all think this site is bad.
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
JeffinMI77
 
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Location: Wyandotte, MI

Re: FINALLY!!

Postby pmaxwell » Fri Feb 10, 2012 11:42 am

Some doctors prefer people to be in the dark. They think you will develop symptoms from reading. We believe that the better informed a person is, the better to understand what is happening and find solutions. I have talked to people who had symptoms they never related to their CM or SM until they learned they could be connected.
Together We Can...
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Re: FINALLY!!

Postby karenb » Sun Feb 12, 2012 10:35 am

Jeff,

I am so glad for you!!!

I just recently found a PM&R doctor (actually a practice with two complementary physicians), and they are really great! In my case, it was the first time a doctor really listened to what was going on and mapped out a plan for working on it.

I have noticed that my NL's attitude seems to shift regarding SM - when I was first dx'd 4-1/2 years ago, it was as if he'd found the root of all my leg problems. Then there was a dry patch of a bunch of "expert" NLs telling me I was making it up and nothing was wrong - at that stage, my own NL almost seemed to backpedal about whether my SM could be causing any problems. I saw him on Friday, and he's back on the bandwagon cheering me on, following a chat with my PM&R doctor.

I think this site is useful for a number of reasons - it's kind of like a support group "just for us", but it's also got a huge experience and knowledge base, and a great reference for figuring out where to start with each new symptom we experience.

Karen
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Re: FINALLY!!

Postby JeffinMI77 » Thu Feb 16, 2012 10:40 am

Well I love this site. I stayed away for awhile because this diagnosis was consuming my life. It just drives me crazy with the way these dr's treat some of their patients. The last NL had my looking for therapists and totally disregarding the SM. Regardless of the size or if it's causing the systoms should they be telling us about things we should avoid to keep them from growing if possible?

Now I do believe that despression can make things worse, it drives me crazy when they treat you like you're crazy. It's also disturbing to see all the news stories about people abusing Rx drugs and Now the whole Whitney Houston story....More people making those of us who need them suffer.
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
JeffinMI77
 
Posts: 42
Joined: Thu Dec 29, 2011 10:29 am
Location: Wyandotte, MI

Re: FINALLY!!

Postby karenb » Sat Feb 25, 2012 3:57 pm

Hi Jeff,

I definitely understand about this diagnosis consuming your life. Sometimes I get into that mode as well... until I need to focus on something else, or am just too tired of being so consumed.

The issues with medication and treatment are a whole other kettle of fish... My prescription drug insurance gives me complete fits when it comes to getting my scripts filled on a regular basis, between changing the rules every time i get a new script, changing my scripts without telling me, and other problems. Their last screw-up cost me two 450-mile Round Trip drives to a "participating pharmacy", when they could have actually filled my script here. I was never even told that the script was a controlled substance until the last refill.

Karen
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Location: Las Cruces, NM

Re: FINALLY!!

Postby tennesseewalker » Sun Apr 15, 2012 4:01 pm

Most docs only know about SM symptoms by reading what's in their medical books. Basically a couple of paragraphs. Not a very broad base to educate them about a condition that we have intimate knowledge of.

I'm fortunate to have my twin who also has CM/SM to talk to. So often she will ask how I'm doing, and when I tell her what's going on with me, she will say "YOU, TOO???" So I know I'm not making these symptoms up.

How many other SM patients does YOUR doctor have besides you? My NL has no other SM patients. He has had a couple in the past, but none whose symptoms are as severe as mine. Lucky me.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: FINALLY!!

Postby JeffinMI77 » Mon Apr 23, 2012 11:53 pm

I'm not sure how many patients she has treated just that she has treated it. She seems to listen pretty well and asks me what I want instead of telling me. I've recently started that social security journey so i'm thankful to have my PCP and PM&R docs both on board. My PCP's father in law has syringomyelia so he understands.
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
JeffinMI77
 
Posts: 42
Joined: Thu Dec 29, 2011 10:29 am
Location: Wyandotte, MI


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