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worriedude

New member
Joined
Dec 24, 2006
Messages
2
Reason
PALS
Country
IN
State
New Delhi
City
Delhi
Let me start with a brief history about myself.

I am a 23 year old Male.

In April 2005, i was diagnosed with Hodgkin's Lymphoma (A cancer of lymph glands). Radiotherapy and Chemotherapy were given (which included a steroid called Dexona). My post treatment scans were clean and i was declared to be in remission.
Everything was going well, when in July 2006, i got acute ITP (an autoimmune platelet disorder). I was given IVIG and Prednisone (starting with 60mg and then tapered) for 4 months. My blood report came back normal but i had anemia (low rbc count) for which i was given B12 injections.
Now as soon as i finished treatment, i noticed that i had a difficulty in walking. Not much to cause me much trouble in my daily routines, but the difficulty in walking was increasing day by day and i could feel the worsening in muscle strength of legs every single day intervals. That was early november. At about 15th november i visited my hematologist who treated me for ITP, and said that it could be Steroid induced myopathy. But nonetheless, he referred me to a Neurologist.

The neurologist said that he didnt think its steroid induced myopathy, and conducted a NCV (nerve conduction velocity) test, which showed Motor Axonal Peripheral Neuropathy.
I was given vit B12 injections for 10 days, but even after taking 5 injections, there was no improvement but the weakness continued to be worsening day after day as before. Now 5th December onwards, i could not walk without support.

I changed my neurologist, and he recommended redo of NCV and some other tests related to nerve conduction like brain functioning, senses etc. Surprisingly, every single test came back normal, even the NCV which was abnormal a few days ago. The doc said that either it could be because of vit B12 injections that i had, or maybe the previous NCV was not conducted properly. There was less possibility that the 5 injections made per. neuropathy disappear, as my muscle weakness was still increasing. Now i required wheelchair for intra-hospital travel.

The neurologist still diagnosed it as peripheral neuropathy and again given me B12 injections which are slightly stronger. However, there is no improvement in my condition.

So in a nutshell, a weakening of lower limbs which started 1.5 months ago, and woresening every single day, can it be ALS? I know that ALS is difficult to diagnose, but i am surprised my neurologist hasnt even ordered for an EMG test. Also, my weakeness is mainly in lower limbs (both legs) and very slight weakness in hands which is negligible.

Does ALS grow this fast? I mean that within 1.5 months i have come from walking 1/2 kms daily to now using wheelchair and person support to walk and travel. Since my NCV the second time was normal, i am more concerned that it is indeed ALS since i have heard that NCV is normal in ALS. Also, i am just 23 years ago, but i know that ALS can strike at any age, but in 20s is uncommon, specially with men?
 

cartman

Active member
Joined
Sep 21, 2006
Messages
31
Reason
PALS
State
mo
City
nixa
worriedude

i don't have any special knowledge that you have als but i can tell you that when it strck me it was fast. one month i could walk, the next i was in a scooter, i now have weakness in every part of my body, it has been 6 months since i was diagnosed and there has been no let up in the progression

cartman
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi worriedude. Your progression is abnormally fast from what others here have experienced. I would be getting myself referred to an ALS Clinic as soon as possible. It doesn't sound to me like the 2 guys you have seen are looking at the whole picture yet. You may not have ALS but at least they would give you all the tests to rule it out. AL.
 

Meg1

Distinguished member
Joined
Jul 5, 2005
Messages
118
Al's advice is excellent. And the good news is that the docs at an ALS clinic will be much more familiar with the ALS mimics than will general neurologists so that they'll be able to point you in the right direction if they determine it's not ALS (I agree with Al that your case sounds abnormally fast for ALS). Have your docs looked into the possibility of it being another autoimmune problem? Those tend to travel in packs, you know.
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
worriedude said:
Let me start with a brief history about myself.

I am a 23 year old Male.

In April 2005, i was diagnosed with Hodgkin's Lymphoma (A cancer of lymph glands). Radiotherapy and Chemotherapy were given (which included a steroid called Dexona). My post treatment scans were clean and i was declared to be in remission.
Everything was going well, when in July 2006, i got acute ITP (an autoimmune platelet disorder). I was given IVIG and Prednisone (starting with 60mg and then tapered) for 4 months. My blood report came back normal but i had anemia (low rbc count) for which i was given B12 injections.
Now as soon as i finished treatment, i noticed that i had a difficulty in walking. Not much to cause me much trouble in my daily routines, but the difficulty in walking was increasing day by day and i could feel the worsening in muscle strength of legs every single day intervals. That was early november. At about 15th november i visited my hematologist who treated me for ITP, and said that it could be Steroid induced myopathy. But nonetheless, he referred me to a Neurolologist.
The neurologist said that he didnt think its steroid induced myopathy, and conducted a NCV (nerve conduction velocity) test, which showed Motor Axonal Peripheral Neuropathy.
I was given vit B12 injections for 10 days, but even after taking 5 injections, there was no improvement but the weakness continued to be worsening day after day as before. Now 5th December onwards, i could not walk without support.

I changed my neurologist, and he recommended redo of NCV and some other tests related to nerve conduction like brain functioning, senses etc. Surprisingly, every single test came back normal, even the NCV which was abnormal a few days ago. The doc said that either it could be because of vit B12 injections that i had, or maybe the previous NCV was not conducted properly. There was less possibility that the 5 injections made per. neuropathy disappear, as my muscle weakness was still increasing. Now i required wheelchair for intra-hospital travel.

The neurologist still diagnosed it as peripheral neuropathy and again given me B12 injections which are slightly stronger. However, there is no improvement in my condition.

So in a nutshell, a weakening of lower limbs which started 1.5 months ago, and woresening every single day, can it be ALS? I know that ALS is difficult to diagnose, but i am surprised my neurologist hasnt even ordered for an EMG test. Also, my weakeness is mainly in lower limbs (both legs) and very slight weakness in hands which is negligible.

Does ALS grow this fast? I mean that within 1.5 months i have come from walking 1/2 kms daily to now using wheelchair and person support to walk and travel. Since my NCV the second time was normal, i am more concerned that it is indeed ALS since i have heard that NCV is normal in ALS. Also, i am just 23 years ago, but i know that ALS can strike at any age, but in 20s is uncommon, specially with men?
Hi my nephew had non Hogkins and the treatments left him with weakness in his legs and was told it was from the cancer treatment so I guess its not unusual for that ro happen Good Luck I dont thinks its ALS But go see a Neurologist he may be able to help your symptoms Pat
 
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