Doctor thinks I have als?

[Jwh1]

Hello and thank you for your time in advance. This all started 2 years ago, pain, weakness and atrophy in upper left arm. Went to va doctor, he ordered cervical MRI and emg. MRI showed a problem at c5 C6 in the spine emg showed nerve damage.This was from a very old injury that never gave me any real problems. They said the injury should be affecting the right side not the left. The said a spinal fusion should be performed, this should take care of the problem. So I agreed. There was no benefit to the surgery as nothing changed. Surgery was one year after onset of problems, I started having problems with left leg right after surgery and they said it should slowly start getting better as it takes time to heel. So I waited and things did not get better, left arm has severe atrophy and have very limited use of hand. Left leg is very weak and have problems walking and periodic twitching in both limbs. About 6 months after surgery I started having problems in my right arm similar to the way they started in my left arm. My pcp sent me back to neurosurgical for follow up. They ordered an MRI of the c spine and brain, as well as another emg of left and right arm, (not leg I don't know why) MRI came back normal except for the surgical hardware the emg showed continued denervation in the left and right arm. They could not find any cause for the continued problems. So he had a neuro consult ordered ( his notes stated he was concerned about als). I just saw the va neurologist last week and said I have probable als (I do not know what this means) he was rather vague, and said he was going to have me see an outside neurologist that deals with als patients all the time. He courtesy copied me the letter that he sent to the specialist, letter is referral requesting evaluation and treatment for probable als patient(there it is again probable)have not seen specialist yet, also scheduled pulmonary function and speech therapist. Started having a little bit of a problem swallowing lately(I don't know why I need a speech therapist for that). Well that's the basic history, I never worried about any of this until just recently, (I thought it was from the spine at would level out) I still do not thank this is als, it does not feel right. I guess I am just seeking some thoughts and if I should be as worried as I am becoming. Any thoughts on my situation would be gratefully appreciated. Thank you so much for your time and consideration. I am very sorry anybody has to deal with this horrible thing called als.

 

[Danielson]

Hi Jwh1
Sorry to hear about your frustrating journey. I am on much the same path. Weakness in both arms and was diagnosed with herniated discs at C-5 and C-6. This was in June and my weakness is slightly worse and I have muscle twitching everywhere.

I have much anxiety about it being a muscle-related disease. At first they said my disc problem would only cause weakness in one arm. Then they said I was a rare case where it involved both arms. I'm hopeful but not convinced. Bed rest has not helped, especially with the fasciculations. They are much worse.

I hope your case ends up being all from your spinal issues. From what I've read disc problems can cause a myriad of symptoms.
There are a few of us here with disc issues. I am trying to follow each of them. It does explain the weakness but not the twitching.
My weakened area is my arms but my twitches are everywhere.

I want someone to say "you do not have als for sure" but it just hasn't happened.
It's such a rare disease that I know I most likely do not have it, but the mind can be a really irrational place.

Best of luck to you.

 

[ottawa girl]

Glad you found us - sorry you have reason to.

I'm not an expert by any means, but I'm guessing the doctor wrote "probable ALS", because he's not absolutely 100% certain. As you know, diagnosing ALS is the last item on the menu and one which a physician is reluctant to make quickly. Sometimes the doctor refers to another for confirmation and sometimes you are simply asked to return in a few months at which time a final determination is made as to ALS. (This was my own experience).

Speech therapists do help with swallowing issues and so much more. I was surprised to learn that too. Who knew?

I hope and pray that your preliminary diagnosis is incorrect. Many other curable diseases and conditions can mimic ALS.

 

[Uptown]

Spine problems definitely can cause fasciculations just as they can cause muscle spasticity. Many upper motor neuron deficits present the same as spinal cord injuries. Any reduction in blood flow or nerve impingement can cause atrophy. Keep diligent with follow ups while filling life up with meaningful activities. Should your limitations now develop into ALS, you want to make sure you don't waste a lot of time worrying if you get bad news later.

 

[Jwh1]

Just received rilutek in the mail from va, prescribed by neuro. Do they this as a precaution? Had pulmonary function test today, still waiting to see speech therapist and als specialist.

 

[Barbie]

try to stay calm until you see the ALS specialist. they may be just being cautious with the script, but please study the Rilutek before you begin taking it. Many ALS patients do not take it--it is a personal decision not a given. I hope your appointment is at an ALS clinic--if you look on the ALSA website you will find a list of them. The clinics have all the specialists under one roof, so you only go to one big appt and see them all at one time instead of running around town seeing doctors . I hope so much that they are wrong with the probable diagnosis...please let us know.

And Danielson, for gosh sake--you are not on the same path! your doctor told you he is 99% sure you do NOT have ALS!

 

[Nighthawk]

@Jwh1:

Doctors may..."think" whatever they want to. They are not God nor infallible.
They too make mistakes and misdiagnose people. It happens every day across the country.

Until you don't hear a: "You have ALS" phrase coming out of the mouth of a Physician, you can't claim you have it even if he/she says: "I think you have it".
I "THINK" and I'm "SURE" are very different ways to say something.

Even with a diagnosis of any illness we always seek for a second or even a third opinion from other Physicians, don't we?


Good luck to you.

 

[Danielson]

Thanks Barbie....that is true. I just really related to the C-5, C-6 involvement, fasciculations and arm weakness.
I hope your problem is all in your spine Jwh1.
When the doctor told me he is 99% sure I don't have ALS, what I heard was there is a slight chance you could have it. That's how scary this disease is.

 

[adozi]

Take the rilutek as a precaution. The sooner you take it, the sooner it potentially starts working JUST IN CASE you have it. I am not trying to worry you. I really hope you don't have it. But rilutek is the only drug proven to slow the process of ALS, so why not take it until you find out for sure? Just my two cents. Hope everything works out for the best! Ashley

 

[Jwh1]

If rilutek is the only Rx that has potential to help, why would others choose not to take out? (Are there severe side affects or something I'm not getting from the prescription literature). Just wondering.

 

[Nighthawk]

Take the rilutek as a precaution. The sooner you take it, the sooner it potentially starts working JUST IN CASE you have it. I am not trying to worry you. I really hope you don't have it. But rilutek is the only drug proven to slow the process of ALS, so why not take it until you find out for sure? Just my two cents. Hope everything works out for the best! Ashley

Ashley,

I might be either mistaken or I misunderstood or misread your post.
If "Jwh1" still doesn't have an official ALS/MND diagnosis made by a Neuro, why would they prescribe him Rilutek so early without an official diagnosis yet? He's not going to be sold Rilutek at a Drug store without a prescription.

It's like somebody going to a Doctor's office and the Doctor telling that person he suspects this person might have Cancer but he's still unsure until further tests are performed but...this person is advised by another to undergo Chemotherapy..."just in case".

Regards,

 

[Jwh1]

Barbie, he sending me to als association center of excellence in San Antonio, to a dr. Carlayne Jackson i am not sure if thats a all in one center or not. No confirmed appt. yet, still waiting on va voucher, just want to get this over with. And I would like to think everybody for there input, time and concern. I never you all have your own problems and don't need to listen to mine, so a heart felt thank you.

 

[adozi]

Ashley,

I might be either mistaken or I misunderstood or misread your post.
If "Jwh1" still doesn't have an official ALS/MND diagnosis made by a Neuro, why would they prescribe him Rilutek so early without an official diagnosis yet? He's not going to be sold Rilutek at a Drug....,

He received it in the mail, so clearly the doctor suspects he has it. I'm not one to take what doctors say for granted (any more) but i think he should consider taking it.

 

[R9L13026]

I had read somewhere that it is thought to be most effective if taken as early in the progression of ALS. Take it now you can always change your mind later.

You may decide not to take it since it doesn't seem to help much. I did read one post where the person taking the drug felt it helped them. I think it was just the positive mindset, but make your own decision.

 

[Barbie]

for some the cost of the drug out weighs the small benefits, and I have heard of liver damage too. I have also heard that it is generic now so the cost has come down . you can find alot of post here on Rituluek.