ALS after treating ALL

[keithx]

Hello.21 years old diagnosed with ALL(Acute lymphocytic leukemia (all)
2 years ago.Used to have chemotherapy(vincristine,asparaginase) and Now I'm receiving it too.Couple months ago strange symphtoms appeared.Muscle fatigue,weaknessWeakness,vertigo,pins and needles and numbness in fingers and in hands,pain in muscles.Also there were fasciculations and one or two cramps,trouble swallowing.Pain in fingers,back,neck.I did EMG which found increasing capacity of motor unts and their range.Also there were fasciculations in some areas.But no fibrilations and positive sharp waves.Doctor said that this can be caused by toxic effects of drugs(polyneuropathy) and she did not see any motor neuron troubles and it's not clearly an ALS.In fact all doctors i ve talked said that it might be CIPN(chemo induced peripheral neuropathy) and there can be such signs as ALS has.
Can it be so?Should i worry about possibility of als or not?Thanks for the answer.I ve read about some patiens who were suffered from LPD(lymphoma,lymphotic leukemia) and who then diagnosed with MND so i m really dont know what to do now.

 

[limegreenphysicist]

Keith let me assure you. This is very common among those with cancer who receive chemotherapy. Alot of cancer patients i know cram themselves into the natural medicine clinic to get high dose Vitamins to prevent this. It is very real and happens very often with chemo. And yes your doctor is right it is chemo induced Peripheral Neuropathy. Your EMG doesnt show denervation so there is no active degeneration which is great. Just dropped by to assure you this happens alot and I would worry about fighting cancer and not worry about ALS.

Hope this helps!

 

[AndyDJX]

Hey Keith--

Sorry to hear about what you're going through. I'm a survivor of lymphoma and my fiance is a survivor of leukemia; I know that sh** is not fun at all. But really don't worry about ALS on top of everything else in your brain. As limegreen said, this stuff is VERY common with patients going through chemo. Several of your symptoms point away from ALS and towards CIPN (pins and needles, vertigo, numbness, etc.)

Best of luck with your treatments. Your body will throw you a million curveballs with that stuff, you can pretty much chalk it all up to the crazyness of cancer and chemo, not an additional problem like ALS.

Cheers,

Andy

 

[wright]

Hello Keith

I wanted to also reassure you that your symptoms, your EMG results and your overall story point directly to a neuropathy due to your chemo drugs.

Your symptoms of pins and needles and numbness and pain are classic symptoms of a sensory neuropathy. Those types of symptoms point away from ALS, by the way.

Your EMG results showed no active denervation (i.e. there were no fibrillations or positive sharp waves) . . . and with ALS . . . the EMG would certainly show active denervation. That means the damage that occurred to your motor nerves has stopped and that those nerves are beginning to heal. You did indicate that there were large motor unit potentials, but this would be expected with a neuropathy that has done its damage to the nerves innervating your muscles with subsequent healing of those nerves. That damage has caused some weakness as well, which is what would be expected.

The bad news is that there has clearly been damage to both your sensory and motor nerves. The good news is that it appears the damage to those nerves is no longer happening. Now you must be patient and wait for those damaged nerves to fully heal.

I wish you the best. Take care.

 

[keithx]

Hello Keith

I wanted to also reassure you that your symptoms, your EMG results and your overall story point directly to a neuropathy due to your chemo drugs.

Your symptoms of pins and needles and numbness and pain are classic symptoms of a sensory neuropathy. Those types of symptoms point away from ALS, by the way.

Your EMG results showed no active denervation (i.e. there were no fibrillations or positive sharp waves) . . . and with ALS . . . the EMG would certainly show active denervation. That means the damage that occurred to your motor nerves has stopped and that those nerves are beginning to heal. You did indicate that there were large motor unit potentials, but this would be expected with a neuropathy that has done its damage to the nerves innervating your muscles with subsequent healing of those nerves. That damage has caused some weakness as well, which is what would be expected.

The bad news is that there has clearly been damage to both your sensory and motor nerves. The good news is that it appears the damage to those nerves is no longer happening. Now you must be patient and wait for those damaged nerves to fully heal.

I wish you the best. Take care.

Does ALS always show active denervation?I mean can it be mnd without certain emg finding?Or Emg must show some active process?
Also I heard from the doctor that fasics cant take place without fibs in neuronal process.and they cant appear before denervation.Firstly appear fibs and then fasics.Is it right?

 

[ktmj]

Be careful with jumping on any kind of pattern that you read about here. I have fascics, or twitches - for years - and many perfectly normal EMG's. So clinically, I don't even have fascics.

But my twitches are noticeable all my waking life - I think a classic case of BFS.

 

[ktmj]

Oh, and you've now heard from two of the most clinically knowledgeable people here, the difference being one is much better looking than the other.

I think it is key that you have had past damage from treatments with your other illness, that is not ongoing and active. Fight the good fight on the other, and best wishes...

 

[keithx]

When it's necessary to repeat emg?After half a year,year or maybe month or two?

 

[Alyoop]

That's a decision for your treating Dr. Not one that you need to worry about.they will repeat it when they feel it's necessary.

Aly

 

[limegreenphysicist]

There is always an active denervating process with ALS/MND. It nevers stops. Your nerves will continue to sprout and reconnect which will cause the fascics. Take this as it is because there is much more detail, probably a paragraph of an explanation behind that sad excuse for medical jargon lol..There is a lot of miss information out there even when it come to general practice of neurology. The way the pathological process works suggests for there to be "malignant" fascics there must be a denervating and renervating process. You are not actively denervating therefore ALS would not be your problem.

Repeating an EMG is pointless unless your doctor requires it. If I was your general neuro, I would ask to see you for a clinical check up in six months and no followup EMG being I did not find active denervation.

You dont have it so go play, quit worrying Hugzzz

Kelly

 

[keithx]

Sorry for asking but i find an intresting article and want you to comment

We studied 26 patients with both motor neuron disease and lymphoproliferative disease (LPD). Twenty-three patients had definite or probable upper motor neuron signs; none had electrophysiologic evidence of motor neuropathy. LPD syndromes comprised Waldenström's macroglobulinemia, multiple myeloma, chronic lymphocytic leukemia, follicular cell lymphoma, and Hodgkin's disease. In all but one patient, the cause of disability or death was neurologic. LPD was confined to bone marrow in 14 patients; eight of 14 had monoclonal paraproteinemia. One patient had LPD discovered at autopsy. Treatment of LPD in 20 patients resulted in neurologic improvement in 1 patient and arrest in another; both had progressive spinal muscular atrophy. Eleven patients were worse and 13 died. At least 30 cases have been reported from other centers, bringing the total to 56. Among the unusual reported concomitants were POEMS (polyneuropathy, organomegaly, endocrinopathy, myeloma, and skin changes) syndrome of myeloma and angiotropic lymphoma.


What does it mean none of them did not have electrophysiologic evidence of motor neuropathy?Means that there were a certain neuronal damage,registred on emg or it was a clean emg(?).

LPD was confined to bone marrow in 14 patients
So other had remission or not?

Thanks for answers and comments

 

[limegreenphysicist]

I'm going to shoot this too your straight. I believe I have read this study before but do not feel like doing the research to get the exact study so as to read in its entirety. Motor Neuron Disease at this time includes ALS, PLS, and PMA. ALS in the scope of LPD is not considered a paraneoplastic. ALS has not been found to be linked to any kind of cancer or its treatments. The existence of Upper Motor Neuron disease has been linked to women with breast cancer and is the only one of the three that is close to being considered of paraneoplastic origin.

The selection you were in question about is comparing LPD with Upper Motor Neuron Disease in which they found no electrophysiological evidence of motor neuropathy of which they wouldnt give that an EMG is clean in PLS.

You are trying to get medical enlightenment from articles of which you do not understand given that you are taking bits and pieces to try to justify your fear of ALS.

I cannot tell you that you will never develop ALS just like I cannot tell you that you will not die in a car accident 10 years from now but at this time, you are not denervating which means your current problems are not a consequences of ALS.

Stay off Dr. Giggles you are going down a dangerous road of heightened fear due to assumed medical knowledge. Leave the diagnostic process to those with the years of study, if you could get an MD off Dr. Giggles believe me everyone on earth would be a doctor.

 

[keithx]

I'm going to shoot this too your straight. I believe I have read this study before but do not feel like doing the research to get the exact study so as to read in its entirety. Motor Neuron Disease at this time includes ALS, PLS, and PMA. ALS in the scope of LPD is not considered a paraneoplastic. ALS has not been found to be linked to any kind of cancer or its treatments. The existence of Upper Motor Neuron disease has been linked to women with breast cancer and is the only one of the three that is close to being considered of paraneoplastic origin.

The selection you were in question about is comparing LPD with Upper Motor Neuron Disease in which they found no electrophysiological evidence of motor neuropathy of which they wouldnt give that an EMG is clean in PLS.

You are trying to get medical enlightenment from articles of which you do not understand given that you are taking bits and pieces to try to justify your fear of ALS.

I cannot tell you that you will never develop ALS just like I cannot tell you that you will not die in a car accident 10 years from now but at this time, you are not denervating which means your current problems are not a consequences of ALS.

Stay off Dr. Giggles you are going down a dangerous road of heightened fear due to assumed medical knowledge. Leave the diagnostic process to those with the years of study, if you could get an MD off Dr. Giggles believe me everyone on earth would be a doctor.

Thanks for shooting my fears)I met the doctor yesterday.She didnt find any problems in neurological status as a few months ago/ENMG showed motor-sensory axonal-demielin polyneuropathy.It s necessary to repeat it straight after 3 months to see changes.Hope it ll be fine

 

[Alyoop]

I am really glad that you are heading in the right direction , away from ALS. No doubt you will have some challenges ahead with the polyneuropathy. I wish you the best and hope you will be fine,
Aly

 

[Bad Balance]

Many opinions here.

I suggest that you take some time with your doctor to discuss these issues. Either a neurologist or other.