What's Next?

[ka217]

Hi everyone!

Well, since the last time I wrote, I have seen my MS neuro, my PCP, neurosurgery, and an ENT.  

I have had a nerve conduction study, lyme (ELISA) blood test repeat, free T4, west nile titer, audiogram, and vitamind d level check.  All came back "normal" except for the vitamin d.  My level was at 16.  They put me on 50,000 IU per week for 8 weeks with another blood draw to follow.  

I was sent to neurosurgery by my PCP who noticed that I had a "slightly" bulged disc in my neck.  Needless to say, he doesn't think this is causing my symptoms of headaches and dizziness/lighteheadedness.  I can also hear my pulse in my right ear.

So, that's when I saw the ENT.  He said I was too young to have "iscemic changes" on my MRI (which is what my last neuro left me with).  He ran me through the audiogram, west nile titer, and free T4.  All of which were normal.  So, I received a call from his office yesterday saying they were going to put me on a 7 day dose of oral prednisone to see if that helped with any of my symptoms.

I guess my questions are this:

Can low vitamin d levels cause these symptoms that I am having?  I have taken 4 of the 8 weeks of the high dose and have felt no relief.

What will the prednisone prove?  Any ideas what he is looking for by putting me on this med?

Kelly

[ka217]

Thank you for the response.  I am going to call my ENT, who prescribed the medication and see what he thinks I should do.  

What types of tests are you going through now?  I am looking for things to ask about next...

Kelly

[illinwithoutacause]

dear kelly,

i don't know what the indication is from prednisone worsening your symptoms, but i just wanted to chime in since i am also in limboland and i had the same problem when i was put on IV steroids in early february.  i haven't been the same since--everything, i mean *everything* is much worse.  all i have heard so far from my docs is "that is not the expected outcome," but i am undergoing more tests which will hopefully help us understand why that happened to me.

hope you are feeling better soon!

binx

[ka217]

Just an update...I am on day 3 of the prednisone and my symptoms are much worse.  Do you know if this indicates anything?  Keep in mind that I am not diagnosed with anything yet...

Thank you!

[Quixotic1]

Vertigo can be from an inflammatory process in the inner ear and this is even more likely to respond to oral prednisone.  Just because we have MS we are still vulnerable to the non-MS causes of vertigo, too.

Quix

[ka217]

I have only taken my first dose of the prednisone.  I have 6 1/2 days left!  I am hoping this will do something.  I was just curious as to why my ENT decided to try this and what he was looking for.  

I just wish I could get some answers and move on with my life!!!

Thanks again for your response!

[jensequitur]

When I was on oral prednisone, I noticed instant relief.  I had begun to have problems with vertigo, started a 7-day course of prednisone, and the vertigo went away.  Then I ran out, and the vertigo returned x 10, plus cog fog and prickles and a whole bunch of other stuff I don't really remember!  So I called up the doc and got more prednisone, and after a couple of doses, I was back to being able to function - not well, but better.

So I think that the fact that you're not reacting to the prednisone is an indication that your problem isn't  inflammation of the brain.

[ka217]

Thank you for the quick response!

I am still in limbo land...no doctor that I have seen thinks that I have MS.  

The ENT did mention that it was interesting that I was good all summer last year and then once it got cold and couldn't open windows and be outside that my symptoms flared up again.  He mentioned something about chemicals, so he is going to watch to see if I am better again in a few months when the cold weather is gone.

I guess we'll see what the prednisone does and then try to figure out where to go from there!

Kelly

[Quixotic1]

Actually, we don't have evidence that low Vitamin D causes neurologic symptoms in the was the Vit B12 causes them.  Vitamin D is implicated as one of the causative factors/risks in "developing" MS in the first place.

I will say that replacing Vita D in large doses sure helps some people feel better.  Many people have reported that here on the forum.  Of course you might explain it by the placebo effect, but for me I don't think so.

I began replacing Vit D with about 6000 IU per day for the overall health of my brain.  I DID NOT expect it to help with the day-to-day stuff.  But, I began noticing that suddenly, when I would forget my supplements for a few days, I would feel less well (more fatigued) and then when I would start it again I felt subtly more "peppy" - not that "peppy" is ever a word that I would spontaneously use to describe my cat-like habits (ie. sleeping 14 hours a day).

But, no one expects that neuro symptoms will improve.

You Vit D is very low.  We are looking to keep levels well above 35.  If low Vitamin D may be partially to blame for causing MS, then it can't be good for someone with MS to have very low levels.

Now, there are some researchers and some research that believe that high doses of vitamin D might be beneficial in actually treating MS.  One study I have mentioned before used 14,000 IU daily for more than a year and did see some improvement in the underlying variables like relapses and lesions.  this study needs to be verified with a larger group to be validated.  They also did not see any Vit D toxicity.  Currently microbiological science feels that the highest dose that can generally be accepted as safe is 10,000 IU per day. (data from the Linus Pauling Institute for Micronutrient Research at OHSU).

Remember that reducing relapses and new lesion formation does not necessarily translate into an improvement in current symptoms.  Current symptoms are caused by lesions that have already formed.

If the tinnitus is caused by any measure of inflammation, it might improve on the prednisone.  I don't think the ENT is trying to prove anything.  He is just trying to help you.  A course of prednisone improves all sort of middle ear and inner ear stuff.

I hope this helps.

Quix