Scared and shaking--please help

[essdipity]

I saw my neuro today and it didn't turn out well. After I told him the symptoms I've been having he did pretty much a full neuro exam again (haven't been there in well over a year). He had told me last year he was testing for MS, so I knew that much. But during the exam and before he even looked at the recent brain MRI he said he doesn't think it is MS and doesn't know what it is, maybe anxiety.

He saw that when my arms are outstretched my hands tremble violently. He also paid attention to my swaying/rocking feeling and did a bunch of walking tests. I told him I can't do the heel to toe thing and I lurched all over the place trying to. At least he agreed that I was indeed moving strangely, and said my legs are shaking, which I couldn't perceive, really. I gather that the rest of the exam was basically normal. (last year was negative for Lyme, VEP and LP.)

Then he did look at the MRI films and agreed with the radiologist that there are more white matter changes. Since I have no idea what part of the brain (no recent spinal MRI) affects what parts of the body or causes what kinds of symptoms, I don't know if he didn't think it all correlates or what. He didn't say much of anything about my tingling or burning sensations or about muscle cramps.

As tactfully as I could I asked about MRIs with a 3T magnet, not the weaker one I'd had. What he said is that it wouldn't do any good, that since it's stronger it would just show more white matter changes but there still would be no way of saying that that's MS. Is this crazy or am I crazy? Maybe it's me.

I guess because of my age and the white matter changes the radiologist called 'most consistent with microvascular ischemic disease,' he ordered an ultrasound of my carotid arteries. I see from the prescription that he wants to find out if there is stenosis, which I think means narrowing of the arteries, which may have caused (???) the white matter changes. My blood pressure was and always has been fine and I've never had a stroke or a TIA.

The scariest part is that he is also ordering blood work, a paraneoplastic panel. He seems to think that my hand and walking symptoms could possibly be caused by deterioration in the cerebellum from cancer somewhere else. My God. Or at least he wants to rule that out.

By the end of the exam he said that although he didn't think a 3T MRI would show anything, if I wanted to choose a further consult at Hopkins by a neuroimmunologist that would be okay and he would cooperate, etc. Then he wrote down the names of 4 neuros there that I could call. I live not far, so that's not a problem. He said they would want the results of the tests he has ordered.

So there I am. That's why I'm scared and shaking. I need your support so much.

ess

[pennst8r]

That certainly did not turn out well - no wonder you're shaking! I would definitely be seeking another opinion and quickly. Not sure whether I'd use his choices or not, as he likely chose them because they think alike. The fact that your legs were shaking and you could not perceive it concerns me. Try not to panic, but absolutley get to another doc. Still go through with current doc's testing, but look for a fresh set of eyes.

Will keep you in my prayers. Hang in there

Penn

[TonkaSpirit]

Hello
Take the further consult he offered to you at Hopkins, and see them as soon as you can.  
You will be fine.....no matter what.  We are all here to support you and lend an ear or a shoulder when you need one.  I have similar symptoms, so his suggestion kinda freaks me out too.  I can only imagine what your mind is going through.  Try to get some sleep tonight, go get a massage tomorrow, and set up an apt.  Please let us know how you do.  We will be here waiting.....
Sincerely, Terrie

[essdipity]

Thank you both so much for your kind words and thoughts. I have told literally no one else about the MRI or the neuro visit, and only one or two know that I've had more symptoms. Not that I couldn't. It would be okay, but I'd like to wait till I know something a bit more definite. Don't want to put people through still more worry when there's nothing I can do about it at this point and no answers. Anyway, in view of this I appreciate all the more my friends at the MS Forum.

I'm doing okay today, all things considered. I've made appointments for the ultrasound and the blood work, and am in the process of trying to hook up with Hopkins. Still hoping it will all just magically go away. It has before, over time.

I hope to get more medical insight here, especially about the paraneoplastic tests. I've looked up what these are about and it's not good. Maybe Quix can help me out.

ess

[Momzilla]

Thinking of you!  At work now!

Hugs,

Zilla*

[sllowe]

Hi Ess,

We've never spoken, but I wanted to say hello, and wish you well. You must feel like you are in complete limbo.  Is your Dr going to line up the appt. at Hopkins for you? Asking this, because I would hope that would speed your appt. date.  I agree with the above responses, w/moving ahead quickly w/the tests, that way you will have a lot of reports to bring w/you to Hopkins.

Wish you the best of outcomes, and some calming times, as you move forward,

SL

[grannyhotwheels]

I just want you to know that I'm thinking of you and saying plenty of prayers for you.  I also think you should consult another neurologist.  This one doesn't sound like he is on the same page as you.  The kind of doctor that will work harder to prove you wrong than to really find out what's wrong.

I'll be praying,
Carol

[essdipity]

Once again, thanks to all.

I've somehow stupidly separated this thread from one called paraneoplastic neurologic syndrome, when they really belong in the same one. Oh well, I can be a compu-klutz sometimes!

ess