He is a very nice young man (wow...never thought I'd ever use THAT phrase...showing my age here ) and very smart. He said that he has had patients who don't react well to the botox shots and looks like that's why I've had increased pain instead of the intended reduction of pain. He said there's other types of botox shots (Myobloc??) but he thinks that if this round of botox shots didn't go well (he knew the name of the medication I was given, but I don't), then he wasn't going to try to use a different botox medication.

He said I need to give it another 6 weeks or so to work it's way out of my system as it supposedly stays around the nerve cells for 3 - 4 months. I have noticed a slight decrease in the pain level, so I think the worst may be over. When I told him about the cost of the Flector patch he came back with about 15 samples for me and about 20 lidocaine samples.

I could tell he felt bad when he told me he did not have anything to offer me in the way of help. He feels that the untreated pain I continue to have is due to my connective tissue disease and small fiber neuropathy and since I can't tolerate the meds. usually given one for those problems I'm probably just going to have to tough it out until the medical community comes up with better treatment options.

He did say something about being able to give me the occasional steroid shot but other than that he felt that I'm pretty much at the end of the road as far as pain reduction. Oh well. I'm grateful that I have "the twins" as they do reduce my pain quite a bit. Guess I'm feeling a bit let down because I was hoping to be able to resume some of my favorite activities which had the botox worked as it does in a normal person, it would have allowed me to.

So, not sure where to go from here. He suggested trying the Mayo Clinic but I know they can be difficult to get into as they like weird and unusual cases, and I don't think my case would fit the bill. I, personally, may be weird and unusual, but I don't think that counts

Rae: are you "anonymous" on my blog, leaving those nice comments? Really do appreciate it because I put a lot of work into it and so far not getting much feedback from folks. But I just have to trust that the Lord will direct the people to the site who need to learn the information. Thanks

Yep, that's me! Reason being, I don't do much email and those other options, so I chose 'anonymous', but made sure to sign my name. I was hoping you got my comments of appreciation. It really is a great Blog! I have your blog site listed in my profile page in a visitor message, in case anyone wanted to check it out.....or Fiona can post it again so others can access.

btw, I'm impressed with your Dr for giving you those samples and helping the best he could. Even tho he can't do much at this point, he sure seems like a sincere fella.

Rae

I was told up front the SCS WAS the end of the road treatment for chronic pain.... translating into this is the best medicine has to offer for now.

How about ifn we were in the covered wagon days...... reckon we would have been taken out behind the barn and put down........

What I have is a lot better than that, and from your post Fiona, it looks as though your twins are helping.

I have visited your blog, and need to again.... I respect the time you have going into it, I just had to inject a good dose of Margin [from a Sunday School class I taught] into my life to bring my overwhelming fatigue back under control...... too much involvement too little time.... so I had to cut back some things. I had to or the collective of my wife, and Rae, and Ginnie, and Ger were going to whip me with noodles... I was not quite sure whether they were the swimming pool kind or the wet ones from the kitchen refrigerator [yep, that one stuck, so it is time for dinner!!]

Your blog will see me again,
Promise,
Yep,
Mark56

....................................................OH yes!....
Well, we weren't going to 'whip' you (that would be too abusive), BUT we were gonna make sure they are steaming HOT ! and pour them all over you!!!

Thanks for visiting my blog! Puts a big smile on my face to find my good friends from here, visiting me there

My blog is:http://fionab-lessonslearnedfromlife.blogspot.com/


Fiona