I called the Avonex Access program today to tell them that I was going off Avonex. The rep. was extremely nice and very sympathetic. She transferred me to the nurse and I told her what had happened to my muscles and nerves in my thighs. She was very sympathetic also. I asked both the rep. and the nurse if they had heard of this problem and they said no.

They asked me the normal questions about how I was giving myself the shots. I told them I started last August and was doing everything the same and followed the instructions. No problems whatsoever. They asked me if the problem shots were from the same batch of Avonex. I said no that I had reordered a shipment in May after the first reaction and had spoken to the nurse at that time. The second shipment came in mid May and the problem continued and became worse.

I told them that my blood work came back fine and my Neuro said it was not from the Avonex but it was muscle and nerve damage from the needles.

The nurse transferred me to a woman who said she wanted to make a report and submit it to the FDA. I asked her if she had heard of this and she never really answered me. It was strange.

She kept trying to minimize the reaction I was telling her about. She was trying to interpret it as a site reaction in a small area at the shot site. I kept telling her that if she spread her hand out just above her knee and went all the way up her thigh to the end of the muscle towards her torso, that was how much area that was affected on both my thighs. All of the top thigh muscle! I also have tenderness, pain and swelling on the outer sides of both knees.

I told her that my skin on my thighs was tight and did not feel like my skin. If anything touches it, it hurts. It is burning underneath the skin and sharp shooting pains are all over the place. The skin also looks weird and dimpled.

Anyway, she seemed to be trying to end the conversation with an attitude that it was not a big deal (my words not hers). I wouldn't hang up until she heard me out. It is a big deal to have muscle and nerve damage from a shot and they need to know that I might have permanent damage after 50 Avonex shots in my thighs.

I have read all the fine print about Avonex and have not seen one thing about needle damage. If I had a clue about this after talking to the Avonex nurse after the first reaction, I would have called my Neuro and stopped the shots before it became so serious.

I guess I am ranting but I am po'd about this. I have no intention of suing anyone or causing any problems but they need to let people know if this is a possible side effect. If MS patients have site reactions to shots like I do, then maybe they should not be injecting into the muscle and should be warned.

I'll stop now. I'm working on getting my attitude back on the good side.