Follow up appointment for the vertigo/steroids update.

[lovemy6monkeys]

The appointment started off and threw me for a loop.

The physicians assistant came in first and asked how the steroid treatment worked. I told him the vertigo got better each day and was gone within a week, but does come back briefly if I get overtired or overheated. It does not last long in either instance. He then started talking about the DMD and that the doctor will most likely want to start me on one right now if I'm comfortable with that. That is the part that threw me for a loop LOL He said that though I've only had the one clinically isolated attack, I've been having issues for a while, and they prefer to start DMD as early as they can.

Well, then my doctor came in and he said that because my MRI back at the end of March was clear (radiologist noted very, very subtle lesions...which my doctor could not even see when he went over the images) and because vertigo can be caused by many things, he doesn't want to start me on a DMD at this point. When the vertigo started at the end of April they sent in a request for another MRI. Insurance has denied it. So, he is ordering an MRI for November. Until then, he says he wants to see me, right away no appointment needed, if I have any new issues, or if the vertigo comes back like I had last week (not just briefly from being overheated or tired) then he wants to see me.

So, we are still playing the "wait and see" game. I forgot to bring up the hand tremor, but that is so infrequent I'm not sure it is much of anything. If it gets worse I guess I'll let him know.
~Jess

[Lulu54]

Thanks for letting me know it was useful.  A lot of times I wonder if the recommendations we give for other sites are actually followed! LOL

That site has more stuff on balance and dizziness than we could possibly need to know.  And if you write the doctor an email using that link, he will actually respond.  At least he did to me when I wrote thanking him for all the useful information there.

BTW - be sure to check out his Tai Chi exercises - he did a study for balance using Tai Chi and was able to show it improved balance.  

enjoy the day, L

[lovemy6monkeys]

Thank you for the link to that site! It was very interesting to me!

In looking around on there, I learned a lot more about the type of nystagmus I have (downbeat) and it lead me to understand more of why my doctor said the vertigo was CNS caused and not caused by the ear...also why he hasn't offered to send me to see an ENT.

I found this interesting "Ear disorders rarely cause DBN (at least sitting up)" and also "If downbeating nystagmus cannot be seen during fixation, it is unlikely to reflect a serious pathology."

The nystagmus (both when I only had it in one eye, and when the vertigo hit and it was in both eyes) was seen clearly by the doctor as I was siting upright on the exam table and he was in front of me. When he examined me when the vertigo hit, he had a med student with him, and he was telling her that the nystagmus was seen even better when the light was off, I covered one eye and he looked in the other eye with the light. He told her that doing that caused me to have to focus on the light, with no other points of reference to look at.

I also had to LOL that one of the medicines used for nystagmus, gabapentin, I've been on for a couple months now. I guess it's not overly helpful for me :-)

Anyway, sorry to be so chatty! I guess my morning coffee was a bit strong today :-) Thanks again for the link! I bookmarked it, I think it will be very helpful for me!
~Jess

[Lulu54]

If you are interested, at this page you will find the links to the nystagmus film examples on the site ....

http://www.dizziness-and-balance.com/practice/nystagmus/nystagmus.html

[Lulu54]

Jess,
Kudos to you for being rather calm and pragmatic about your progress toward a diagnosis.  

Wobbly's idea about the ENT is a good thought - you want to rule out any inner ear involvement.  Nystagmus can and does occur with ENT problems.  

A good site to look at is http://www.dizziness-and-balance.com

Buried somewhere on that site is good information on nystagmus.  

my best to you and the monkeys,
Lulu

[lovemy6monkeys]

Thanks Wobbly!

I have not seen an ENT. I think because at the time I saw my neuro for the vertigo I had nystagmus in both eyes he was pretty sure it was a neurological issue.

I have had all the blood tests to rule out mimics.

I'm just going to be patient, which is not my strong suit! My doctor has said that he is "looking forward" to how I do over this summer, he thinks he will learn a lot about what is causing my issues. At the very least, even if I do not have any problems, then I will be having another MRI in about 5 months. Hopefully that will give some results.
~Jess

[Wobbly]

Jess, I know how you feel, I've been there and back again.. it can take quite awhile for the Neuro to get the Dx.. they need to see changes in the MRI, Neuro exams. and symptoms.

please start a timeline if you haven't already and record all your symptoms, like hand tremor even if it's infrequent.. also when you get the tests done ask for copies of the MRI and reports...for your records, also have you had bloodtests done to rule out mimics?  

Have you seen an ENT for inner ear problems re: Vertigo.. just wondering.. I have vertigo alot and have gone through all that..

hope things go well and call the Neuro if you have any other symptoms or the vertigo starts up again
take care
wobbly
dx