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alsornot

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hello there....its been awhile....my neurologist still has me coming back every 3 months for a check up....I finally agreed to start medication....he put me on Lyrica...I asked him if he thought I had severe fibromyalgia...he did not answer, I asked him if I should be seeing a rheumatologist instead of him...and he gave me no answer...then he said some times these things take up to 2 years to diagnosis...has anyone been on lyrica for their als? prior to diagnosis ?
 

MaxEidswick

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>hello there....its been awhile....my neurologist still has me coming back every 3 months for a check up....I finally agreed to start medication....he put me on Lyrica.

Take a look at this Google search:

https://www.google.com/search?q=define+lyrica#q=lyrica+als

and then if I were you I would consider seeing a second neurologist, ideally an ALS aware of neurologist
 

GregK

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Hi alsornot,

If your current neurologist does suspect that you have ALS but did NOT suggest a 2nd opinion from another neurologist who is intimately familiar with ALS I suggest you waste no time in getting a 2nd opinion. If your current neurologist gives even the slightest hint that he/she does not like that idea, run to a new one.

Based on that 2nd opinion you should think hard about continuing with your current neurologist: he/she may be spot-on, but you'd better be damn sure of it....

From what I've seen in this and other forums, 3rd opinions are not unheard of.
---
My neurologists mother died from ALS early in her career so she is definitely not a novice, but she (my neurologist) wasted no time in referring me to the regional expert (or 'grey-beard' as he referred to himself) at the University of Colorado Health Center.
 

affected

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Lyrica is a pain medication.

ALS affects motor neurones, not sensory neurones.

Sure go for a second opinion as suggested here, but I wonder if you are convinced this is ALS when neurologists and your own physician husband are not saying this to you. Surely your husband, being a physician, would sit down and talk deeply with you about what is happening and explain all test results to you and assist you to cope with this process?

I would never expect any doctor suspecting ALS and having their patient in the diagnostic stage to prescribe Lyrica. So I think your doctors are suspecting something else.

I hope you can get to the bottom of whatever is going on with you, it is awful to be not knowing just what is wrong.
 

alsornot

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hello affected and everyone...my husband is an Obstetrican/Gynecologist, his definitely suspect a motor neuron on disease...and tells me too accept it as 'ildefined' or idiopathic.
the Lyrica is helping the hand and feet cramps and fasciculations but not the limb weakness, I have been using a cane and walker for a year now, but my hands are getting just as bad...my second opinion neurologist did find slight finding on EMG and Nerve conduction studies in my right calf and right butt...she referred me back to my original neurologist, I hate to go to a third....I will give him till Nov.2014 as it will be a complete 2 years that I would have seen him. really I am at the point what ever it is , I have to learn to live with it, as I have been doing...thanks to all for your support...much lv. tg
 

MaxEidswick

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>From what I've seen in this and other forums, 3rd opinions are not unheard of.

Really this is no joke. I cynically believe that two out of three neurologists are quacks. Drug dispensers. Not unlike shrinks. Of course that is a bit cynical, but regardless when you're talking about a terminal illness as fun as ALS it's pretty important to know the truth.

Lyrica doesn't make much sense from what I've heard and read.there is a high incident for ALS among our northern friends:). There are a large number of Canadians on this forums -- active members. ask around for specialists do you can go and see. Check with your MDA and ALSA local organizations (they probably have different names up there).

Please take this very seriously and tried it drill down to the truth. hopefully it will be something more manageable.

Kind regards,

Max
 

alsornot

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thank you max....I think I will call the ALS association here in Toronto !
 

alsornot

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Re: Stiffness?

hello Dusty...in February 2012 through the fall of 2012 I had left knee weakness and right foot/leg drag...my first neurologist appointment was November 2012.....I had all the test, MRI, blood test, EMG, Nerve conduction ....which they found slight findings in my right calf and right butt....the dr. put me on gabapentin and amytriplene ...I went off it after a month as from side effects..ive had the tongue fasciculations, right calf fasc. with noticeable wormy muscles, I have had had right ankle weakness all along, long story short its moving to hand and feet cramps, fasc. in back and left leg now and I am walking with a wheelchair....last month I asked my neuro. if I had a severe case of fibromyalgia and he didn't answer, then I asked if I should see a rheumatologist and he didn't answer just kept witing in my file, and said just come back in 3 months, I relented and am now trying Lyrica reluctantly...it is helping with hand cramps only...I am so frustrated...should I seek out a ALS clinic and get a definite yes or no answer ? thanks a bunch, I hope you are having goods and peace of mind in your journey.
 

affected

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are you kidding us?

Why would you even ask if you should seek an ALS clinic when you have been repeatedly told to get a second opinion from an ALS specialist. (don't answer, that was rhetorical)

You have had 'symptoms' for 2 years, your husband is a doctor, and yet you keep coming here saying you think you have ALS.

Get to an ALS clinic, and get back to us afterwards. Really we have done and suggested all we can, you need to rely on the medical profession. I feel fairly certain, that if your husband is any kind of a decent person, and he feels you may actually have ALS, he would already have taken you personally to the best specialists and got this sorted after 2 years.
 

alsornot

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no need here really to reply..but...my cousins husband took 3 years to diagnose and it has been 9 years since his diagnosis...his suggestion just wait..don't talk to me again.
 

affected

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my husband was dead within 11 months ...


Do you realise living 9 years post diagnosis is extremely rare for actual ALS?


Maybe though the advice you got was correct, just wait ... that means staying off places like this and living your life I would presume.

hope all works out for you
 
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