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Samara1991
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Joined: 15 Apr 2010
Age: 32
Gender: Female
Posts: 118
Location: Pennsylvania

22 Nov 2011, 12:40 pm

This is about a problem I have concerning muscle spasticity and issues with doctors... I'm not sure how to handle it and I'm really about ready to cry...So could somebody please help?

This is copied from my facebook so it may seem to be worded weird

So when I started walking on my toes and I went to the first stupid neurologist who told me it was just toe walking and I needed surgery (with no real explaination as to what caused it) I was told by the orthopedic surgon that I should try physical therapy and possibly botox treatments for my muscles. The physical therapist told me there was nothing he could do for my muscles because they were to toned up because of me having muscle spasticity (which until then nobody told me I had!! !) They fought for me to get on a medicine called baclofen to help treat it. The neurologist said I really didn't need it which obviously wasnt true. Finally I was put on it and it helped A LOT!! ! Of course by that time I had been on my toes for so long that I needed surgery anyway. The neurologist still didn't want to admit that I had anything wrong with me other then toe walking so I decided to go to a different neurologist...

I went to Hersey medical center to see their neurologist. She actually seemed to know what she was talking about!! ! They got me on the right dose of baclofen (80mg) and actually wanted to find out what was wrong with me. She couldn't find anything on the EMG so she said I should see the doctor there who works with rare forms of neuromuscular diseases...

So I went to see that idiot. She told me that there was something on the EMG but it was so small that it could have easily been caused from the surgery that I had to lengthen my achilles tendons (caused by muscle spasticity) and said that my problem seems to be from my muscles not properly getting an enzime or something like that. She told me I should go to the University of Pennsylvania to have further studies....I have an appointment there on January 27th.

Meanwhile I am running out of baclofen (the one thing that helped me not to have muscle spasticity) and so I called the original neurologist I was seeing at Hershey to get a refill... The neuromuscular specialists secratery called back and said she would check with the doctor to get a refill. Well today she called again and said that the doctor wasnt sure why I was on it since it doesnt seem like I need it in the first place. Shes dropping me down to only 30mg a day and I only have 1 refill on that and after that I would have to consult the family doctor for more and they arnt allowed to write perscritions for baclofen...

So now I have to worry about gaining to much muscle tone again and being right back to where I started from...



JoelBenjaminGriffin
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Joined: 30 Dec 2011
Age: 39
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Location: Little Elm, Texas

07 Jan 2012, 4:42 pm

Post edited.



Last edited by JoelBenjaminGriffin on 10 Jan 2012, 10:29 pm, edited 1 time in total.

The_Wanderer
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07 Jan 2012, 6:01 pm

Sorry to hear about all this. I have two ideas for ya 1. To go see your general care doctor and explain to him how this is the only drug that has worked for you. Tell him that you have alot of experience using the drug. In fact I would be completely honest and just tell him how they lowered your and it is no longer working. Tell him you just need enough medicine to hold you off until your appointment with the specialist. 2. Since it is a uncontrolled substance online sales are legal. This will probably cost you a bit of money though. These online pharmacies usually have a paid doctor contracted with them. You will fill out an online questionnaire that outlines your symptoms. You should mention that you were on 80mgs and that only that dose helped you. I hope this helps