MS? 60 lesions vertibular problem head shaking

[Meriann64]

This has been a very supportive forum and now I am going to join rather than just read.  I have ear fullness and gait issues- can't walk straight-veer to the right.  I have intermittent "yes" head shaking that gets worse with tightness in my shoulders, being upset, looking down and for some reason getting up from the toilet (ie. looking down?).  I am exhausted and can take 3 naps a day.  Sometimes just lying down for 15 minutes helps and I can keep functioning.  Been to an ENT and everything is normal, he says need neurologist.  Had MRI with contrast and it shows 60 lesions.  Never had typical migraines- maybe 3 in my life.  Unfortunately have diabetes, gestational that never went away.  I took the last week off from work, but am going to see how I do on Monday.  
From all that I have read- 60 lesions is a huge number.  I also have a "coil" into my affected ear, but my MRI couldn't really see if it was impinging on my ear nerve nor visualize the nerve.
So... neurologist on Thursday.  I like to be prepared and am in the health care field.  
Any thoughts?

[Meriann64]

Thanks for the advice.  The neurologist also said the spots are not in the right area for MS.   But I'll keep in mind she could be the wrong neurologist to see.
I have had such bad neck pain now that I am off the steroids.  I went to phys tx and she thinks the discs below and maybe above my fusion (2002) are bad.  She said to call now to see a neurosurgeon or orth surgeon.  She said that cervical spine can cause the head shaking and the balance problems/ear fullness.
I'm going to explore this route.
I will update you when I can- thanks so much for responding.

[immisceo]

If a neurologist ever says 'too old for MS'...

it's time for a new neurologist. I know it can be exhausting to change horses mid-stream, but they just flat-out have their facts wrong. Of course, we can't say if you are dealing with MS or something else, but a statement like that is a huge red flag to me.

[essdipity]

Your neuro said you're too old for MS? Or am I misunderstanding you? But if that's what was said, I urge you to fire that neuro forthwith and find someone competent. There is no upper age for MS--many people in their 60s and beyond have been diagnosed, and there is good scientific data demonstrating that.

I don't at all know that you have MS, but you have enough MS-like symptoms that you should be checked out by a neuro specializing in MS. If you're a reasonably large metro area this shouldn't be too hard. Try your local chapter of the Nat'l MS Society for suggestions. Good luck.

ess

[Meriann64]

Well the neurologist thinks the radiologist over reported.  Still have the lesions but too old for MS she says.  Still have the yes head tremors my neck is killing me and I'm still overwhelmed with fatigue.  I have physical therapy tomorrow and waiting for vestibular testing.  Off steroids and follow up after testing done. I have a job that uses my hands and arms and the computer and these things and looking down make the head shaking really bad.  Light duty for now...  Thx

[kwarendorf]

Hi M -

Here are my thoughts on your neuro appointment. Let he/she do the work. They should take a thorough history. I would focus on the top 3-4 symotoms as relates to quality of life. If they want more they should ask. Try not to suggest diagagnoses. They hate that, and you're liable to end up in their "nut" group :-)

Keep us posted.

Kyle

[HVAC]

It is good to have a timeline of symptoms or list 5 symptoms which bother you the most. Of course keep it brief. I let the neurologist do his thing then when he is finished I ask questions.

Alex

[supermum_ms]

Hi and welcome,

There are numerous non demyelination related conditions that also cause brain lesions, diabetes as far as i'm aware is actually associated with vascular lesions and potentially could be the explanation but you'll have a better idea of what your dealing with after you've seen the neurologist on Thursday. Let us know how you get on...

Cheers........JJ

[ConfirmedRachel]

Hi fm64

You're in the right place to get support nod to vent if you need. It's hard to tell from what you've said so far as so many different things have the symptoms you describe.

Good luck with your appt on Thurs, write down some questions you might want to ask in case you forget at the time, have a list of symptoms and any causes of flare ups as that can be useful for the doc as they put the picture together.

I suspect you won't get immediate answers as they'll want/need to do some tests etc to help them see what is going on for you.

Let us know what they have to say and I'm sure the medical peeps on the forum will chip in with their opinions - which are usually pretty helpful.

Nx

[bbassel]

Just wanted to say welcome and you have come to the right place. I have to head out now or I would type more, but just wanted to say hello.

All the best,
Barb