Guest guest Posted April 15, 2003 Report Share Posted April 15, 2003 Cookie, Yes doctors are a pain in the $#@ & aren't they. It took me two years to final get a true dx...........But the secret is a good neurologist if you don't like him find another one a good way is to ask your local MDA Assoc. they could lead you to a good one. I got lucky mine was associated with them. On my visits (every six months) the local MDA Clinic comes in to see all his patients that have motor neuro dieases what assists we need they are very helpful. My prayers are with you girl you have a lot on your plate right now I'll be thinking about you......................Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2003 Report Share Posted April 15, 2003 Cookie, about three/four years ago, my neuro sent me to a physiatrist. I was sent for a brace for my leg. He gave me an EMG, and sent me off to a " specialist " who makes braces. I have been wearing it since. It helps. Lately, I find even with the brace, I am dragging my foot more often. Shoes are a big problem with the brace. I wear a sneaker with Velcro closures. Hard to get brace into " tie " shoes. By the way, I recently called his office and two others for some PT. Guess what??? They all said that they don't do that!! Now I ask you? Hope this is a help to you. Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2003 Report Share Posted April 15, 2003 Cookie I'm probably way off base, but when they thought I had MS they kept checking my eyes. The first place you can find MS is in the eyes - the nerve in the back of the eye. Other than that, I have no clue. Keep us posted and call your neuro and flat out ask him. Let me know what you find out. Best of luck to you, Donna > > Hi Gang, > > Last Thursday I went to my local neuro for a visit. Since I have lots more > clonus, etc. he suggested I start on baclofen. I started last night with 1/4 of > 10 mg. So far so good. > > Yesterday I had a visit with the " super specialist neuro " at Mt. Sinai in NYC. > He spent alot of time examining my eyes. I asked later if he saw something he > was concerned about. He said he looked at the result of my MRI and it said ther > was mild atrophic change in the superior cerebellar vermis. He thought that was > something unusual to go along with PLS. He said it could be, but unusual. So > now he wants me to repeat the MRI and the MR Spectroscopy. I asked him what he > was looking for or what it could represent. He didn't want to go there. So my > big question is, do any of you know what that means..and this MRI was done back > in December and only now he notices this?????? Dang...doctors make me crazy. > > Think of me next Thursday as I go for the breast ultra sound. Maybe they will > find one part of my body that works right. > > Oh yea, he is also wanting to send me to a psydiatrist (special MD who > specializes in PT) to see if an orthodic may be of help or exercise. Any of > you..been there..done that? > > It's beautiful out today...hope it is for all of you. > > Cookie > > **************************** > Man's way leads to a hopeless > end..God's way leads to an endless > hope. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2003 Report Share Posted April 15, 2003 > > Hi Gang, > > Last Thursday I went to my local neuro for a visit. Since I have lots more > clonus, etc. he suggested I start on baclofen. I started last night with 1/4 of > 10 mg. So far so good. > > Yesterday I had a visit with the " super specialist neuro " at Mt. Sinai in NYC. > He spent alot of time examining my eyes. I asked later if he saw something he > was concerned about. He said he looked at the result of my MRI and it said ther > was mild atrophic change in the superior cerebellar vermis. He thought that was > something unusual to go along with PLS. He said it could be, but unusual. So > now he wants me to repeat the MRI and the MR Spectroscopy. I asked him what he > was looking for or what it could represent. He didn't want to go there. So my > big question is, do any of you know what that means..and this MRI was done back > in December and only now he notices this?????? Dang...doctors make me crazy. > > Think of me next Thursday as I go for the breast ultra sound. Maybe they will > find one part of my body that works right. > > Oh yea, he is also wanting to send me to a psydiatrist (special MD who > specializes in PT) to see if an orthodic may be of help or exercise. Any of > you..been there..done that? > > It's beautiful out today...hope it is for all of you. > > Cookie > > **************************** > Man's way leads to a hopeless > end..God's way leads to an endless > hope. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2003 Report Share Posted April 16, 2003 Connie, You sound like you could use a new brace. I am going on my third pair. I have also been working with the same orthotics person for almost 2 years and the same company. When I need an adjustment , I call and make an appointment. She just calls the neuro for a new script when I need a new pair. She makes the decisions on what model I need. I have deteriorated and my legs don't hold me up as well as they did before. I am getting another pair made now. Mark did a very good explanation of how to break in splints (AFO) . If they hurt,,,they aren't adjusted right. If you get a red spot...more adjustment. Sherry Re: that figures Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2003 Report Share Posted April 16, 2003 Thanks Sherry for reply I'll be going to my neuro doc May 2nd. I will ask him what he thinks about a new brace. I doubt if he will even know one way or another. Neuro docs here in New Jersey, stink. I have just about given up on finding a new one. Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2003 Report Share Posted April 16, 2003 Donna, I had a spinal tap to rule out the MS. Remember I ended up in the hospital for four days..they had to do the blood patch..anyway it's not about MS. Cookie **************************** Man's way leads to a hopeless end..God's way leads to an endless hope. > Cookie I'm probably way off base, but when they thought I had MS > they kept checking my eyes. The first place you can find MS is in > the eyes - the nerve in the back of the eye. Other than that, I > have no clue. Keep us posted and call your neuro and flat out ask > him. Let me know what you find out. > Best of luck to you, > Donna > > > > > > Hi Gang, > > > > Last Thursday I went to my local neuro for a visit. Since I have > lots more > > clonus, etc. he suggested I start on baclofen. I started last > night with 1/4 of > > 10 mg. So far so good. > > > > Yesterday I had a visit with the " super specialist neuro " at Mt. > Sinai in NYC. > > He spent alot of time examining my eyes. I asked later if he saw > something he > > was concerned about. He said he looked at the result of my MRI and > it said ther > > was mild atrophic change in the superior cerebellar vermis. He > thought that was > > something unusual to go along with PLS. He said it could be, but > unusual. So > > now he wants me to repeat the MRI and the MR Spectroscopy. I asked > him what he > > was looking for or what it could represent. He didn't want to go > there. So my > > big question is, do any of you know what that means..and this MRI > was done back > > in December and only now he notices this?????? Dang...doctors make > me crazy. > > > > Think of me next Thursday as I go for the breast ultra sound. > Maybe they will > > find one part of my body that works right. > > > > Oh yea, he is also wanting to send me to a psydiatrist (special MD > who > > specializes in PT) to see if an orthodic may be of help or > exercise. Any of > > you..been there..done that? > > > > It's beautiful out today...hope it is for all of you. > > > > Cookie > > > > **************************** > > Man's way leads to a hopeless > > end..God's way leads to an endless > > hope. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2003 Report Share Posted April 16, 2003 Connie...yup that's the way it goes. Physiatrist is supposed to be a specialist in physical therapy, etc., but doesn't do physical therapy. Go figure. Cookie **************************** Man's way leads to a hopeless end..God's way leads to an endless hope. > Cookie, about three/four years ago, my neuro sent me to a physiatrist. I > was sent for a brace for my leg. He gave me an EMG, and sent me off to a > " specialist " who makes braces. I have been wearing it since. It helps. > Lately, I find even with the brace, I am dragging my foot more often. Shoes > are a big problem with the brace. I wear a sneaker with Velcro closures. > Hard to get brace into " tie " shoes. By the way, I recently called his office > and two others for some PT. Guess what??? They all said that they don't do > that!! Now I ask you? > Hope this is a help to you. Connie > > > > Quote Link to comment Share on other sites More sharing options...
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