Am I close?

[dbaxter56]

I was diagnosed with ALS 2 weeks ago. I had been taking Neurontin for 9 years for Bi-Polar. I know the two are connected somehow. Just 2 months after stopping neurontin I started showing signs for ALS. It has been less than one year since the symptoms started. I can barely walk, have a difficult time breathing, I get tried very easily, hard time speaking to where people can understand me and I definitely have no use of my hands. Does this disease take over this fast? Is this normal? How long do I have? Very Concerned

 

[Al]

Welcome but sorry for your diagnosis. Sorry to say but this disease can move incredibly fast in some. I was diagnosed in 2003 so it can be slow. No one knows the cause yet and does it really matter much once you have it. I wouldn't dwell on it. No one can say how much time you have left. Try to live each day to the fullest. ALS sometimes plateaus where you'll stop progressing for a while. Hopefully you will.

AL.

 

[trfogey]

I was diagnosed with ALS 2 weeks ago. I had been taking Neurontin for 9 years for Bi-Polar. I know the two are connected somehow. Just 2 months after stopping neurontin I started showing signs for ALS.

Sorry to hear about your diagnosis, but I doubt that Neurontin (also known as gabapentin) caused your illness. Gabapentin is commonly prescribed to ALS patients to treat various sensory problems that can can occur in later-stage ALS and has even been put through extensive clinical trials for treatment of ALS because it is a glutamate-inhibiting medication. Unfortunately, it didn't prove effective against ALS, but there's no evidence that it caused anyone's ALS to get worse.

The ALS Newsletter 4-5 | MDA

Of course, if you have some evidence to the contrary, you are certainly welcome to present it to us, so we can get the word out to our members who are using it.

It has been less than one year since the symptoms started. I can barely walk, have a difficult time breathing, I get tried very easily, hard time speaking to where people can understand me and I definitely have no use of my hands. Does this disease take over this fast? Is this normal?

There really isn't anything about ALS progression that can be called normal. There is a large variance in progression. What you describe as your condition is not unusual at the one year mark, though it would be classified as faster progression than the mean.

How long do I have? Very Concerned

No one can really answer that question for you. The speed of your progression is one factor. Your willingness to use properly various life-extending measures that are available to you, such as non-invasive ventilation, PEG feeding, and tracheostomy/invasive ventilation will also be a crucial factor in the length and quality of your life.

You may also be fortunate enough, as a recent diagnosee, to qualify for clinical trials of new medications that might be helpful to you.

If you have not yet been referred to an ALSA- or MDA-certified ALS clinic, get your current doctors to make that referral. The ALS clinics are an invaluable resource for fighting this disease, from cutting edge care and clinical trials to cutting bureaucratic red tape to get basic equipment that you'll need. Additionally, if you're a military veteran, there are many resources available to you through the VA.

Once again, sorry to hear of your diagnosis and welcome to the board.

 

[Will]

I was diagnosed with ALS 2 weeks ago. I had been taking Neurontin for 9 years for Bi-Polar. I know the two are connected somehow. Just 2 months after stopping neurontin I started showing signs for ALS.

You know, our doctors and others keep saying there is no connection between Neurontin and ALS onset, but Neurotin suppresses the neural transmission of pain; And ALS is motor neuron supression. So is there really no connection?

My PALS was and still is on 1800 mg daily of Neurontin for Trigeminal Neuralgia (which it successfully treats).

But I have a worry in the back of my mind that there is a connection.

 

[LizT]

I mean absolutely no disrespect to anyone here, but dont you think if its so easy for one of us to come up with a connection to this disease, that maybe the doctors wouldve caught onto that in the last 70 years of research? They do know more than us.... And of course I speak of the doctors who actually study ALS. Just a thought.

 

[Toto's Dorothy]

I pray there is no connection because two of my children have been on neurontin for two different neurological disorders.

 

[hjlindley]

My mother took gabapentin for 15 years for peripheral neuralgia after Guillan Barre. No side effects, no ALS. I took it for 5 days for post surgical neuralgia and got such incredible anxiety attacks I d/c'd it. Everyone is different. This is why medecine is an art, not an exact science.

 

[momap53]

I've been taking Gabapentin for several months and have found it to be a big help in reducing the muscle spasms associated with ALS. I had never taken it prior to Dx.

 

[ladyrider]

I've been taking Gabapentin for several months and have found it to be a big help in reducing the muscle spasms associated with ALS. I had never taken it prior to ALS diagnosis.

at my last clinic visit I was given this med but have not taken any it. Does it really help with muscle spasm? I already take a muscle relaxer. Don't like taking meds afraid to mix them. Have been having much more cramps lately.

 

[Toto's Dorothy]

Deb, does gabapentin/neurontin work better than baclofen? I'm getting no relief from baclofen or flexeril.

 

[momap53]

Everybody's different. Baclofen didn't do much for me, the gabapentin helps. Ask your Neuro. Let him know that your current combo isn't working.