Help - newly diagnosed

[gboyea]

I'm a bit lost - finally third neurologist confirmed I have ALS. I am using walker now - wondering if I should go ahead and purchase a used wheel chair on Craig's List. Also - in a great deal of pain at night - horrible cramps - given muscle relaxers - still little help. They tell me ALS is not painful - my pain is so bad I pray to die. Any advice would be greatly appreciated. Gail

 

[Nikki J]

A fair number of people buy a wherlchair like that as a temporary measure often to use when out with family but ultimately you need a power chair and should discuss that with your clinic. It can take several months to get.

Your pain is from cramps? If it is refractory to magnesium, pickle juice, mustard and tonic water ask about mexilitine. It is a heart medication but it has been found to help ALS cramping significantly. Stretches at bedtime are also good to do

 

[LSARIOL]

My sister is on Baclofin and CBD oil for muscle spasms/cramps. The combination helped but one without the other only lessened symptoms.

 

[Clearwater AL]

Gail,

You mentioned your sister... are you FALS? Does your sister have ALS too?

Maybe share some of your story with us...

 

[dldugan]

I was able to get a loaner PWC from the ALS group in Illinois. Mine has been ordered. Insurance will cover the cost.

 

[ReginaS]

You might know this already. Usually insurances cover 1 wheelchair/scooter every 5 years. We stayed away from a scooter for that reason though it might have been fun. It might have been useless by now.

PALS has an Permobil M3 - we have very tight turns in the house - it works.
He first used a cane, walker, and a transport wheelchair when we wanted to enjoy the weather and go for a walk.

Once the pwc arrived he used it right away and found it rather helpful. We simply went with the recommendation of the local ALS chapter as we had no idea what features were available and which ones he would need. My head felt like it was constantly spinning there were so many things to adjust to and we had no experience. It all worked out.

PT suggested to still walk some so that he would not lose is muscles even sooner. He did some of that but then it was not safe any longer.

 

[KarenNWendyn]

Sorry to have to welcome you , but welcome to this forum. It’s a great place for information and support.

The main rules are to stay safe and avoid falls. Falls speed up ALS progression. You also want to conserve energy. And you want to try to anticipate needs ahead of time.

So if you feel safe with a walker and short walks don’t wear you out, then stay with that for now. But get a DMV permit so you don’t have to walk too far if you go out.

And if you’re using a walker, a wheelchair is the next step. I agree with others to start the process early of ordering a power wheelchair, and using one from your ALS loaner closet while you’re waiting. You could also borrow a transport wheelchair from the loaner closet. I wouldn’t bother with buying one, since eventually you’ll need a power wheelchair, and insurance will cover that.

Agree with Baclofen plus CBD oil for pain. Also physical therapy to show you and a caregiver range of motion exercises.

Best of luck!

 

[gboyea]

Thanks to all for the information. I will contact my local ALS Chapter and see if they can help with a wheel chair selection. Gail Boyea

 

[plcare]

I have recently been diagnosed as well and I also experience bad leg cramps, especially at night. I have found that medical marijuana helps relieve the cramps and also helps to allow me to sleep a little better.

 

[KimT]

Baclofen is usually effective for spasticity. I'm lower motor neuron dominant and all it did was make me feel weak.

I'm also in a lot of pain. Medical cannabis, lots of magnesium, and Valium help me. I take a lot of CBD and a small amount of THC at bedtime. If I forget the Valium, my feet cramp so badly I can't sleep. There is a slight risk in taking benzos but it is one I'm willing to take.

I also use THC topical cream and it definitely helps. Also magnesium oil seems to help my feet and heat relieves the cramps.

I had to try different combinations. If I overdo, I use a very small amount of Oxy for breakthrough pain but only early in the day.

I have a very good pain management neurologist and he has helped me with pain.

 

[Vernbev]

My husband was diagnosed in March of 2018 and suffered unbelievably with leg spasms keeping us both up most of the night. The doctors at the ALS Clinic put him on various meds with little to no results. We finally settled on a combination of Gabapentin and TiZANidine with a very small amount of relief. The doctors never suggested magnesium however a friend of ours who is a doctor suggested topical magnesium which did nothing to alleviate the symptoms. I did my homework and read oral Magnesium worked for many with RLS so we tried it. The first dosage stopped the spasms and he has been able to sleep every night since he began taking it months ago. There is one particular brand I order from Amazon, MagOx 400 pharmaceutical grade that is recommended by most physicians and pharmacists.

 

[nona]

I have been on Mexilitene for about three years and it greatly reduced muscle cramping.