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seanoc1

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May 28, 2010
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Learn about ALS
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US
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WA
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Seattle
Sorry for the long post. I need help on what next to do.

I started having tingling and numbness in my left hand and the left side of my face. I called my GP and they sent me to the ER. After 4 hours, a CAT scan and an MRI. They ruled out stroke and tumor. They referred me to a Neurologist.

Two weeks later I met with the Neurologist who performed some tests on me. I was sent to get a Neck MRI. The MRI came out clear. I made an appointment for follow up in 3 weeks.

In that time, I started getting tingling and numbness in my right arm and both legs.

At the appointment, the neurologist did the same tests (keep me from pushing arms etc.) There was noticeable weakness in my left arm. During the test my left hand started trembling. The neurologists ordered another Head MRI.

Now not all MRI machines are created equal. My original MRI was done on a 1.5 Tesla unit. The new MRI was being done on a 3 tesla unit.

The result-the MRI was clear. Next step Spinal Tap.

My symptoms are also getting worse. My forearms and back of the neck are lightly cramping. Muscles are beginning to twitch at very strange times. If I hold anything in my left hand, the trembling is really noticeable.

I get my spinal tap and am bed ridden for a couple of days.

Yesterday, I got my results. My spinal tap is clear. No MS, no Lyme disease, no cancers.

My neurologist is stumped. She said she would not be opposed to a second opinion.

Here is where I need help. What questions should I be asking? What tests should I request to be done?

I know I probably do not have ALS (I hope). From the reading I have done I know it can take a long time to diagnose.

I just do not know where to go from here.

Thanks for reading.

Sean
 
You need a referral to a neuromuscular specialist at a Neuromuscular Clinic. Your neurologist can refer you to the best, closest in your area.

And, for what it's worth you are correct. It does not sound like ALS.
 
Sean did they rule out Guillain-Barre Syndrome? It's an autoimmune disease. Usually an EMG will pick up GBS. Good luck.
Laurel
 
No, they have not. I was thinking about asking for one.
 
Did they do a EMG on you?
 
No, they have not yet. Since this is the 2nd person who asked that question. I know the first question to ask.
 
Also, you'll want to ask about testing for other autoimmune diseases as well as B-12 deficiency. Our neuro said that being deficient in B-12 could actually contribute to the cramps...

Hang in there...this is a tough, frustrating time. Prayers for peace and courage to you!
 
Seanoc1~I, too, had a neuro that did a brain MRI (my 3rd), a spinal MRI (my 2nd), a spinal tap, EMG (my 2nd), a Nerve-Conduction Study (my 2nd), and a number of blood tests, with no diagnosed. She couldn't figure it out so she referred me to the Professor of Neurology at the University of Colorado. After the "dog and pony show" he immediately knew what the diagnosed was, PLS. This after a diagnosed in 1/2005 of something else.
 
Sean
i spent a week in hospital having a mulitude of tests even though i had severve drop foot and weakness in all limbs and fascilations ...the neurologist did a nerve response and weakness test on me and still wouldnt give me a diagnosed ... he then waited 2 mths and did another response test as a comparison and finally gave me my diagnosed... what im trying to say is that because this is a big diagnosed they wont confirm until they are as 100% confident as they can be ... my thoughts are with you while you play the waiting game but stay as positive as you can the imagination can be your worst enemy ... best wishes to ypu ... Karen
 
Sean, I am sorry to hear of all that you are going through. I know it's not easy to have to constantly wait. I'm glad the neuro that you currently have is so willing for a second opinion. Perhaps that in itself is a good sign? Try to breathe deeply and be as patient as is possible in this situation. I would be crawling the walls...fortunately you aren't me, huh? Ask the questions the other members have given you. I will pray for you. Hopefully good news will be coming your way soon. Keep us posted.

Have a blessed day.
 
Sorry you are experiencing all this and have to go through the tests. Are you a diabetic? And could it be a pinched nerve? Did you ever overexercise? I am just interested in knowing more. An EMG is crucial ..... and watching for muscles to vanish.
 
most people with als are lacking in many catorgories of deficiency.like melody said b12 ,and many amino acids arent processing right from the liver causing many problems .i would for sure have an emg done and if that checks out ok i woul go see a specialist that does nuromuscular work .
 
Thank you all for the information. I will be asking for an EMG. It comforts me that I am walking a well worn path. I will have to learn to be patient.

Thanks,

Sean
 
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