Surprise visit to Vanderbilt Neuro today.

[Sailorsong]

My VA Neuro has a Vanderbilt Neuro doing my treatment for MS /  Sjogren's on a fee based referrals. 3 months ago my VA neuro had put in for one of the referrals which was denied so I wasn't expecting it to be approved when he put in for the referral again a couple of weeks ago.  So I was very surprised when they called yesterday at 3 PM to set up an appointment. Of course since I have been planning a trip out to Oregon to see my brother this month they wanted to schedule it right in the middle of the time I would be gone. When I explained that I was going away right after Memorial day the receptionist scheduled me to come in the next day at 3 PM ( today).  Needless to say I was shocked and probably could have been holding my breath all along waiting to this appointment. LOL

I had brought along my copy of the Neuro Psych testing report for the Vanderbilt Neuro to see. The first thing he did was read the report and it took him only about 5 minutes to read all 10 pages. I could tell by watching his eyes that he was actually reading it and that got me a little bit down because it took me  an hour to read the same 10 pages. :(

I then got another shock. The last time I saw this Neuro he said after looking at my latest MRI that the lesions are not typical of MS but he could not rule out MS. So he was still on the fence about my having MS. Today he asked me how I was tolerating my CellCept that he has me on to treat my MS.  There was no possible or probable in his statement, definite MS. I wonder now if the Neuro Psych testing report is what pushed him over to my having MS as it stated the problems I have are typical of MS.

After going over my list of issues he recommends that I get a brace for my left foot as I am starting to develop foot drop on it now too ( I think I'll try to get a different kind of brace if I am going to have them on both feet now.) He is also recommending a sleep study be done to try and figure out what may to keeping me from getting a restful sleep. I kind of suspect it is the daily hiccups I have developed lately since that is also when my sleeping seems to have gotten bad.

Dennis

[Sailorsong]

A quick PS

The VA had already officially switched me to a dual DX of both Sjogren' syndrome and MS. Aren't I lucky?

Dennis

[Sailorsong]

When I first got the daily hiccups a couple of months ago I googled it to see what I could find out. The hiccups weren't bad, Just a few of them with 15 minutes to 2 hours between sets. I was just really curious about the hiccups.

What I read about them was kind of interesting and made sense to me.

Hiccups are a fluttering of the diaphragm caused by muscle spasms ( as if we don't know about them! ).  One site I was reading about this said that a MS lesion in the brain stem can cause hiccups. But I have not been able to find that quote again for some reason. But another just said they can be caused by problems in the CNS. Interestingly at the same time as the hiccups started I was also feeling a fluttering of the muscles in my stomach area. Hmmmm. Those have since stopped but the hiccups continue.

When going to the VA you don't get any real options when it comes to braces. When I got the one for my right foot I could have gotten a hinged one or one without a hinge. They opted for me to get the non-hinged because of my leg weakness as I would be less likely to fall because of that. But the offset is that when I sit down I basically fall part of the way because I can't bend my ankle. And then to get up I have to use my left arm pressing on my left lag to get up enough to start using my right leg to support myself. With two non-hinged braces I don't think I would be able to do that so will probably have to go for them to be both hinged.

I have had a sleep study in the past done which indicated that I do not snore and I only stopped breathing for very short period a couple of times during the night. I know that when I am awake and experience a sharp pain I will hold my breath for a short period and I suspect that was what was going on during that sleep study.  I suspect if they do another sleep study one of the following will be the result.

1) Hiccups are disturbing my sleep.
2) Low O2 levels ( I have been having more trouble lately with shortness of breath )
3) no REM cycles due to not being able to stop thinking.

Dennis'

[grannyhotwheels]

Yeah Dennis..

Just maybe you are finally getting somewhere... At least that's what it sounds like to me... During the times I'm able to walk I have braces that I wear... They where made from a company called hangers and they are actually not that bad... They can put some pretty cool designs on them too...

I get the hiccups a lot myself but I never associated it with the MS... Is it a symptom?  I had never really thought about that until you said that you get them on a daily basis also... A sleep study would probably do a lot of good...

I would like to know if one of the reasons I sleep so restless is that maybe I'm having spasms during my sleep thus not allowing me to really rest... I wake up a lot and my legs will feel like I have been running a marathon... I'm like what's up with this... I'm sure there are several more on here that do that too...

I wish you the best and please keep us updated...

I'll be praying,
Carol