Needing input/advice desperately
 

DX'd with ET

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I was dx'd with ET while I was seeing a neuro because I was rear ended 2 yrs ago & have since developed all kinds of neuropathy issues. He noticed my head shaking. I'm taking Gabapentin & wear a 10mg Butrans patch for my neuropathy symptoms. I've noticed that sometimes I get wild jerks (mostly in my legs but they occur in my arms as well) & I thought they were side effects from the Butrans, but reading an earlier post regarding muscle jerks makes me think that it's the ET.
I've also experienced what I believe to be optic neuritis. I'm convinced I have MS, but my CT & MRI's were negative.
I have read that if the MRI isn't given with contrast & thin sliced, it might not show any evidence of MS.
Do any of you suffer from other MS type symptoms??

Thanks for listening.

Leslie

im sorry but I cant remember what ET stands for. Even if I think I know, it may mean something different in your world than mine. Could you tell us what ET is?

Wild jerks can come from many things. Meds, disease, stress, bad mattress, exhaustion, and even foods. Tell us more.

I think ET stands for Essential Termor. :confused:

Hi Jiggered, welcome to our neck of the woods. MS is tricky to DX. An MRI does not tell all, especially in the early onset of MS. ANeuro shouldn't rule it out on 1 MRI. Have you had any other test for MS?

You might want to see a MS specialist Neuro.

:hug::hug:

Hi Leslie,

Have you seen an Opthamologist to rule in or out your belief of have Optic Neuritis? If not you probably should.

There are no symptoms that are unique to MS. Neurological symptoms or Neurological type symptoms can have many causes.

A MRI picks up abnormalties, those abnormalties could be MS related or caused by something else. A normal MRI will not become abnormal due to the use of contrast. A MRI without contrast will still show abnormalties, if there are any. Contrast will "light up" an abnormalty that is currently active.

I have not had any other tests for MS. I didn't know there were MS Neuro's. I will be asking my doc for a referral. I have had blood work done, not sure but I think it was to look for auto immune markers.
I guess I better get my eye's checked. I didn't realize that I could go to the eye doc to rule out optic neuritis.

Thanks very much
Leslie

Yep, ET is essential tremor. It's what Katherine Hepburn had. I believe it's tied in with all my other symtoms.

After the accident I developed Trigeminal Neuralgia & over time started experiencing sharp, burning, stabbing pains in my hands, arms, feet & legs. These pains have worsened over the last 2 yrs.
My doc has put me on many meds. I am currently taking 900mg Gabapentin & wear a 10mg Butrans patch.

I miss alot of work, because of all my pains. When it rains or is cold I'm really buggered up.

I'm so sick & tired of being sick & tired. I just bought a condo & really really need to work!!!

Thanks for your advice.

Leslie

I have not seen an Opthamologist, I didn't realize that they could diagnose ON. Will be making an appt. tomorrow. Thanks very much for that advice.

I had read somewhere that lesions may not show up on a regular MRI. I know that when I saw the pain specialist, he mentioned that maybe I should have a thin slice MRI with contrast.

When he sent his letter to my pcp, he neglected to put that in his letter ?? WTF. I was gobsmacked & very embarrased when I told my pcp that was his suggestion. I'm pretty sure she thought I was making it up.

My pcp doesn't think I have MS, but I'm convinced I do.

I guess my next step is to see the eye guys!! I will go from there.

Thanks again

Leslie

Yes, an Opthamologist can diagnose Optic Neuritis. The eyes are their specialty :)

Let us know how your appointment with the Opthamologist goes. We care :hug:

In my world, ET stands for Essential Thrombocythemia. That's a myeloproliferative syndrome similar to the Polycythemia Vera I have, which makes extra platelets. These CAN cause neuro abnormalities, but most of mine were there before I got Polycythemia Vera, so while i may make things worse, it's not the essential neurological cause. It guess ET in this world (the forum) is Essential Tremor. I do not have that, but the wild jerks I definitely have.
My horrid lately experience is that, while my jerks have been under control with Mag and Calcium, since the fires poisoned my world they came back in full, horrid almost uncontrollable force. I agitated for a shot of Kenalog to reduce inflammation, and it helped, but now I am just worn out and worried about what's next. I can only get Kenalog twice a year, I think, and the fires are going to go all summer. Right now, no smoke....but fires burning heavily and spreading to the south and north.