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Latest Neuro appt. today
Just got home from Nashville and my latest Neuro Appt. (Sorry was too busy to post in the this weeks things or what ever it is called). I wiated 1/2 hour just to get into the exam room and another hour before the doctor came in. As it is most of the time at the VA it a yet another doctor that saw me. She was a very pretty brunette resident but seemed to be up on my medical history. She immediately told me she took so long to see me because she was going over my medical records and test results before seeing me. My records are over 2 inches thick so I imagine it would take quite a while to just read them.
The outside neuro they sent me to a month ago was for some tests which didn't happen as he didn't know why they sent me to see him. The tests were a VEP which I know all about, but there was another one listed next to it that I have no idea of what it is. I was looking at the notes upside down but it looked like STEP. Any ideas of what that is anyone?
It is a good thing that I was not doing a sobreity test as I would have failed completely. By the time I took the second step in the heel to toe I was falling over. Standing on my toes wasn't too bad but standing on my heels had me falling over again. I also have been having some new problems that I reported to her. For years I have been getting tremors in my right arm but over the last couple of weeks I have been getting them in my left arm as well. I have also started getting electric shocks in my right arm and hand. During the pushing back with arms my right arm tremored quite a bit.
From my talk with her it sounds like they are leaning toward MS as my dx but don't want to start me on any treatment at this time because of the side effects of the drugs. My tests are results are sugestive but just not conclusive enough that I have MS. She ordered a new brain MRI w/ contrast and a referral to Vanderbilt University MS clinic to get a second opinion.
Dennis
The outside neuro they sent me to a month ago was for some tests which didn't happen as he didn't know why they sent me to see him. The tests were a VEP which I know all about, but there was another one listed next to it that I have no idea of what it is. I was looking at the notes upside down but it looked like STEP. Any ideas of what that is anyone?
It is a good thing that I was not doing a sobreity test as I would have failed completely. By the time I took the second step in the heel to toe I was falling over. Standing on my toes wasn't too bad but standing on my heels had me falling over again. I also have been having some new problems that I reported to her. For years I have been getting tremors in my right arm but over the last couple of weeks I have been getting them in my left arm as well. I have also started getting electric shocks in my right arm and hand. During the pushing back with arms my right arm tremored quite a bit.
From my talk with her it sounds like they are leaning toward MS as my dx but don't want to start me on any treatment at this time because of the side effects of the drugs. My tests are results are sugestive but just not conclusive enough that I have MS. She ordered a new brain MRI w/ contrast and a referral to Vanderbilt University MS clinic to get a second opinion.
Dennis
After writing the last post I spoted a post on the DMDs, From just a quick scan of what was being said about side effects it sound like most of them can be ruled out for me.
Not only do I have liver and kidney problems (they check that out every 3 months to make sure it isn't getting worse). but I also have thyroid problems. I also am not allowed to take Ibuprofen so I wouldn't be able to fight off side effects of the interferons as some people were taking about.
If you really like George Clooney then would would like some of the doctors I see at Vandy and the VA. I usually don't get the good looking female doctors so today was a nice change. While waiting to be seen I could see all of the doctors working in the Neurology dept today. I was sure based on past experiences I was going to get the really ugy old guy as my doctor today. Actually he wasn't that old or ugly. But he reminded me of how they use to make the mad scientists look in the movies.
A lot of the time in winter if I get up early and go down into my basement I can usualy find 3 or 4 deer standing around in my carport. My carport is 32 feet wide and I only have 1 car so there is lots of room for them. Every time I find them in my carport it makes my day. It took me a while to get the "Wild Turkey" in your post. I guess that is in part due to the fact I have not had a drink in about 25 years. I never was really that big of a drinker.
Dennis
Not only do I have liver and kidney problems (they check that out every 3 months to make sure it isn't getting worse). but I also have thyroid problems. I also am not allowed to take Ibuprofen so I wouldn't be able to fight off side effects of the interferons as some people were taking about.
If you really like George Clooney then would would like some of the doctors I see at Vandy and the VA. I usually don't get the good looking female doctors so today was a nice change. While waiting to be seen I could see all of the doctors working in the Neurology dept today. I was sure based on past experiences I was going to get the really ugy old guy as my doctor today. Actually he wasn't that old or ugly. But he reminded me of how they use to make the mad scientists look in the movies.
A lot of the time in winter if I get up early and go down into my basement I can usualy find 3 or 4 deer standing around in my carport. My carport is 32 feet wide and I only have 1 car so there is lots of room for them. Every time I find them in my carport it makes my day. It took me a while to get the "Wild Turkey" in your post. I guess that is in part due to the fact I have not had a drink in about 25 years. I never was really that big of a drinker.
Dennis
Wildlife drought? well you should have driven through my backyard then - when I came home and looked outside there was a young deer eating my purple phlox. It was right by my house - much closer than they usually come. Wild turkey too --- its stocked in my bar because that's a favorite of a good friend. :-)
You're on a roll with pretty women today - I hope that keeps up for you. It must make the appts. more pleasant. I'm still waiting for George Clooney to be my doctor.
The VA/Vandy connection is ok, I guess. And yes, the interferons do have the possibility of causing liver damage and you have to do blood screenings every 3 months. Copaxone doesn't have that precaution and is not know to cause liver damage.
wishing you the best,
Lulu
You're on a roll with pretty women today - I hope that keeps up for you. It must make the appts. more pleasant. I'm still waiting for George Clooney to be my doctor.
The VA/Vandy connection is ok, I guess. And yes, the interferons do have the possibility of causing liver damage and you have to do blood screenings every 3 months. Copaxone doesn't have that precaution and is not know to cause liver damage.
wishing you the best,
Lulu
There reasoning for wanting to do more tests and the second opinion is that they feel my condition is stable currently.
It really doesn't matter if I go to Vandy or the VA as they are right next to each other. Also the doctor I saw today is actually a Vandy resident as they perform double duty at both Vandy and the VA. She wants to have Vandy do the tests as the scheduling dept at the VA sent me to a useless outside doctor.
So is there some place that lists what the side effects of the DMDs are? Maybe with all of my other health problems they are concerned about the side effects having a bad effect on those other problems. I know that several common treatments for some my health problems are constantly being ruled out due to other health problems (namely kidneys and liver).
I actually spent 5 hours today at the VA as I had to go to the ER due to an ear infection. I usually get a sinus / ear infection with each chnge in seasons so they give me Zithromax each time. I kind of messed up today because the ER doctor asked if I wanted 1 or 2 Zpaks and I told her only one. I should have said 2 as it cost me the same amount if I got only 1 or 2 paks. Then I would have had the meds on hand for my next infection in a few more months. Oh and the ER doc was also a pretty woman. :)
The really bad part of the trip to the VA was that on the Trace (Nachez Track Nation Park) I did not see any wild life. Most of the time I will get to see sveral dozen wild turkeys and half dozen deer. Today the only wild life was one signle crow. What a bummer that was.
Dennis
It really doesn't matter if I go to Vandy or the VA as they are right next to each other. Also the doctor I saw today is actually a Vandy resident as they perform double duty at both Vandy and the VA. She wants to have Vandy do the tests as the scheduling dept at the VA sent me to a useless outside doctor.
So is there some place that lists what the side effects of the DMDs are? Maybe with all of my other health problems they are concerned about the side effects having a bad effect on those other problems. I know that several common treatments for some my health problems are constantly being ruled out due to other health problems (namely kidneys and liver).
I actually spent 5 hours today at the VA as I had to go to the ER due to an ear infection. I usually get a sinus / ear infection with each chnge in seasons so they give me Zithromax each time. I kind of messed up today because the ER doctor asked if I wanted 1 or 2 Zpaks and I told her only one. I should have said 2 as it cost me the same amount if I got only 1 or 2 paks. Then I would have had the meds on hand for my next infection in a few more months. Oh and the ER doc was also a pretty woman. :)
The really bad part of the trip to the VA was that on the Trace (Nachez Track Nation Park) I did not see any wild life. Most of the time I will get to see sveral dozen wild turkeys and half dozen deer. Today the only wild life was one signle crow. What a bummer that was.
Dennis
Side effects of DMD versus the possible ability to slow or alter the course of MS? That's a no-brainer. Continued shame on the VA system for putting off giving you the dx and getting you started on a DMD.
Do they really need a second opinion from Vandy? That's just more travel time for you.
Sorry Dennis, it seems they just keep yanking your chain. I'm glad at least she was a pretty brunette - at least there was one positive here.
I'm not going to be satisfied for you until you get a name for your disease. You've waited too many years in this medical system.........
sorry to rant- I can't help it! After reading about all those vets getting false notification that they had ALS, I am even more distressed about the care you get at their hands.
as always,
Lulu
Do they really need a second opinion from Vandy? That's just more travel time for you.
Sorry Dennis, it seems they just keep yanking your chain. I'm glad at least she was a pretty brunette - at least there was one positive here.
I'm not going to be satisfied for you until you get a name for your disease. You've waited too many years in this medical system.........
sorry to rant- I can't help it! After reading about all those vets getting false notification that they had ALS, I am even more distressed about the care you get at their hands.
as always,
Lulu
The STEP was probably and SSEP. It is an evoked potential that measures the amount of time it takes for stimulus to travel a nerve to the brain. This usually is measured from your wrists and your ankles using attached electrodes. It is painless but can be aggravating.
It sounds like you are on your way to a dx. I hope you get it soon. terry
It sounds like you are on your way to a dx. I hope you get it soon. terry
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