MS and BPPV

[jmp77]

Back here again with another question for clarification, is BPPV a symptom of MS?

I am still in limbo land as I think I've seen you guys refer to it.

Neurologist said I have MS. Dizziness and vertigo was a major issue last spring. But that he said was BPPV.

Neuro has been very vague and hard to pin down (except for wanting me on meds) on which of my complaints are actually MS symptoms. He has said I have MS with no clinical signs.?????

[jmp77]

neurology office....they said I cannot see the MS specialist because I have already become an established patient of another neuro.

[kwarendorf]

Who is "they" who don't want you to see the local MS neuro? Is it your insurance carrier or your neuro?

[jmp77]

Much of my frustration i think i bring upon myself. For example, i continually get 'lost' online and frustrated knowing I've seen info but cannot find my way back to it.

The reply to my original question, left me trying to remember exactly what was it the DR did say....what did the reports say? I actually do not think that "MS" has been written as a DX....but guess I need to pour through the paperwork again to see.

I did have two days of tests which led to the BPPV and positional therapy to 'fix' that. That test also showed nystagmus.  This was during a 4-6 week period of vertigo, dizziness, loss of balance.

I did have to return for another positional treatment a few weeks later. I have not had 'constant' dizziness or vertigo since, but it does come and go unexpectedly. I guess it is more the fear that it will come and stay.

My neuro did say I should get a 2nd opinion, but then after lots of rigamarole, discovered there is a neuro who specializes in MS in the same practice. They do not want to let me see him for a 2nd opinion. As such, I am waiting to hear back from an MS neuro in a city about 1-1/2 hour drive. Not really convenient....but.

I see others say to 'tell about yourself'. I cannot find 'where' to do that. LOL Then again, often I have trouble finding my way back here. Not a computer genius.

[BubblesRN74]

I too am in Limbo Land...and I suffer from dizziness/vertigo often and feel "off balance" most days. Just today am feeling better after 5 days of actual vertigo...ugh!!  

My PCP finally agreed to refer me to neuro because with this onset of dizziness last Friday, my right foot is all tingly like it's been asleep for days.  He said that vertigo is not a symptom of MS so they probably wouldn't find anything :o/   My last visit in October w/my dizziness, he said even w/my other neuro symptoms I have had no vision changes therefore MS was not a possiblity....nothing about my dizziness.  So I am confused.  

I have an abnormal Rhomberg and been through balance testing 2x (1x in the rotational chair), a VNG, and inner ear MRI's and that testing has been normal even stating in the final report that my symptoms point to the CNS.

LimboLand is very frustrating to say the least.  

[sllowe]

Hi jmp,

Welcome to the forum. RIS (radiologically isolated syndrome) can be suggestive of MS. However, without clinical correlation, I too would definitely get that 2nd opinion before taking any meds for MS.

It's important to leave no stone unturned where a dx of MS is concerned because there are many mimics. There is also a lot one must have (in addition to lesions on the brain) to be dx'd with MS.

That said, feel you are doing the right thing by asking for a 2nd opinion. I'm surprised your doctor did not suggest this to you unless you are seeing an MS specialist already.

L'hermittes can vary from person to person, however, yes, if what you describe is said to be l'hermittes by a doctor, it's triggered from chin to chest movements.

Wishing you well with your next steps :)
Thanks for joining us.
-shell

[jmp77]

Thanks for your reply. I am writing before reading that link to answer your questions. Yes, neurologist says I have MS, from MRI results. As to the 'no clinical signs', for ALL the symptoms that ended me in his office, he wrote off as 'other things'. Find myself thinking, then why treat for MS?

Asked for another opinion before doing any meds...well, that has been a literal circus run around. Very frustrating.

I do not have my records handy now as I write, but yes, I do think that all the things you mention were negative at my visit.

Specifically the L'Hermittes...is that something that occurs every time a person moves their neck and gets that 'shock' for it to be a symptom...or does only the occasional occurrence indicate that being 'positive'?

Will read that link. thanks!

[supermum_ms]

Um I'm a bit confused, if your neuro is saying you have MS, then your actually out of limbo because you've got a dx, oh are you meaning he says you have MS but isn't listing it as your dx?

The "you have MS with no clinical signs" is probably because his neuro tests aren't finding any of the clinical signs of lesion damage eg L'Hermittes, ON, hyperactive reflex, clonus, Romberg sign, Babinski sign etc. which makes me think your MRI must be showing up with lesions regardless.

Vertigo is a common sx of MS, there are various causes, BPPV is not so much the cause in someone with MS although it still can be, BPPV is probably the most common cause of vertigo in the general population who have vertigo. Did you have any tests to determine the cause? Below is a good article about vertigo in MS.....

http://www.mstrust.org.uk/information/opendoor/articles/0802_10_11.jsp

Cheers.........JJ