I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!
Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)
Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV
Post Edited (White Beard) : 4/6/2009 12:23:09 PM (GMT-6)
Post Edited (Pamela Neckpain) : 4/6/2009 4:18:28 PM (GMT-6)
Pamela & kttn251977
This new neurologist I have when I seen him the end of December, he done a thorough exam the first thing he did was he had me sit down in a chair with my arm and hands at my sides and then he sat down right in front of me knees to knees and he put his hands palms down on my thighs and just quietly ( he told me to relax and no talking or movement) sat there for several minutes, then he did the same thing with his hands on my arms, then he started the regular exam. He told me that I vibrate, he said that my muscles are constantly twitching or vibrating! OK ??? he also said he didn't think I had Parkinsons and he sent me to the Rush movement disorder clinic in Chicago, they specialize in Parkinsons and they agreed they don't think I have it either and I have been weaned off of the Senemet and Lodosyn that I had been taking 4 times a day for the past two years! This wasn't the only thing my old neurologist was wrong about! He had also screwed up on my Sleep Apnea treatment! But that is another story! That neurologist is nolonger my Doctor!
Anyway, I have balance problems, and swallowing problems, along with losing some movements, I will get periods when I will have a bunch of wierd symptoms, numbness and tingling in my extremitities and balance and walking problems and also swallowing difficulities, and some other things, they will last from days to sometimes weeks and then they will go away, ( but they always come back, some times weeks later other times months later or longer) but when they go away I will often be left with a deficit, of some type, as an example I can nolonger hold my arms straight out in front of me with my palms up, in fact I cant hold my arm straight out at all. I used to love doing sculpture, I cant do it any more because I can't hold my arms out to do the work! Also I get spasms, I get them in my hands, in my feet I get them everywhere, the insides of my thighs is a killer! That is why I take 25mg of Baclofen every 8 hours to keep the spasms under control! And of course the pain. When I have a bout with these symptoms, my pain increases unbelievably!
When I went to the ER a couple of weeks ago and they thought it was my kidneys, the test came back negative and they then said it was probably my back, but during this time I have also been having intense numbness an tingling in my feet, and swallowing and gagging problems and some of the other symptoms I get, and my pain in my back has been unreal, I have been taking allot more percocet for break through. Is it all connected or related???? I don't know, but the symptoms are starting to go away!
A number of years ago (8 or 9 maybe more) I had a MRI of my brain, the MRI folks said I had possibly had some mini strokes my nero psyc Doctor said the same, but my neurologist at that time said he didn't agree! But he said he didn't know what those three spots were, but he was sure they were not important! I found out a week or so ago from Gretchen the moderator over on the MS forum that they told her that the spots on her first MRI was also mini strokes but it really was MS, now I am not saying that, that is what mine is, but it does make me wonder a bit???? I have allot of the same symptoms and I have had allot of abnormal test and allot of different Doctors have mentioned MS over allot of years!
Over the years I have gotten worse, I now walk with a cane, bent over, if I ever got pulled over driving and was asked to walk a straight line with one foot in front of the other,.....well.......I can not do it! nor can do the finger to nose thing!, I can't do either of them! I will go to jail for sure! ( but not realy funny! ) It kind of scares me because I am not that old, I will be 58 in June, (I know my beard makes me look older,) but I have seen the changes in me and it scares me! and I really worry, I worry that since I have changed this much, in the last 10 or so years,........what I will be like in the future??? I don't know!!! As of now no one has ever connected the dots and have came up with a firm diagnoses! They do know I have degenerative Disc disease and arthritis, and Chronic Pain, and a couple of Doctors also say I also have Fibromyalgia, and a couple of other things! But no firm answers for this other stuff! One of my past PCP's said quite a while ago, "what difference does it make? Most neuro degenerative diseases are not curable anyway!" Well maybe he is right! But I would still like to know!
Post Edited (White Beard) : 4/6/2009 8:06:52 PM (GMT-6)
I wanted to pop in and write this post to you. A few years ago a friend of mine started having many different problems with things like balance, gait, tremors and other stuff. But the biggy was her vision was coming and going. She was referred to nearly every kind of specialist known to man in both Fort Worth and Dallas. One thing we are not short of here is drs. She went over to UT Southwestern in Dallas which is a big teaching facility. By this time her vision was totally gone for long periods of time. Well, after seeing tons and tons of drs no one could tell her what was wrong. Her Mother insisted her husband bring her to Tampa, Florida where she lived, she wanted her seen by a group down there that specialized in MS. Sure enough, she has MS, they were able to get her on the proper treatment and medication program and over time she got her sight back and she has done well. Oh, she may have a day or two of a little fuzziness, but that is much better than no sight at all. The drs down there found her a local dr here in Ft. Worth that communicates back and forth for follow-up care. She was seen by nearly 100 drs here, all specialist.
From what she was told MS is a very difficult disease to diagnose and can be missed so many times by drs. If you get to the point that you don't think you are satisfied and getting the answers you need, I will be glad to get you the name of the facility in Florida. I do know my friend had pure hell for one year with all the different drs and everyone standing around tapping their toes and scratching their butts, meanwhile she was blind as a bat at times.
I disagree totally with the dr and Pam about what we need to know when it comes to our health. We need to know these things and what is going on with our bodies, whether or not there is a treatment available or not. I am not one to settle for guesses or half witted opinions on whether or not I have a disease or an illness. When a dr starts telling me crap like that, that tells me he has no idea what is wrong or he is guessing. I much more respect for a dr that will admit something is out of his area or he does not know and have him send me to someone that does. That has happened several times to me and I appreciate my dr being honest with me. We can never know too much as far as I am concerned. We have to be responsible for getting the proper care we need because sometimes the drs have no clue........Susie
straydog any info you can provide I will gladly accept! E-mail meif you want. One thing I like about this new neurologist I have is he admits when he doesn't know something, the last time I saw him and he sent me to Rush in Chicago, he told that my condition was way beyond his area of knowledge, but he also said, but I he wasn't afraid to refer me to the people that do have the knowledge! So that give me some hope! You know a long time ago I used to have vision problems with my vision going dim, and it was often just on one side! That was back when I was still in the Air Force and that is when I was first told that it might be MS, but back then nobody ever followed up on it, and they didn't have MRI available like they do today! I still have the visual disturbances, ( Jagged curved flashing lines in the upper right quadrant of my vision) I had two of them last week, they last anywhere from a minute or two to 10 or 20 minutes) I get them every now and then, but they do seem to happen more when I have all those other symptoms! but the Docs have always told me they are migraines without the head ache???
skeye I thought I seen your post over in the MS forum?
I thought that was you skeye I read your post, I have also posted over there and the folks over there were very kind and helpful! I do hope you can get some answers! This medical Limbo land is the pits!