Status
Not open for further replies.

[email protected]

New member
Joined
Feb 15, 2007
Messages
8
Reason
PALS
Country
IN
State
Haryana
City
Gurgaon
My father got diagnosed with ALS in sept 06 and since then we have consulted almost all the top neurosurgeons and neurophysicians in New Delhi, India (That's where I live) for the same.
He is already on Rilutor since Sept.
His current symptoms are: Right arm and hand completly wasted, Right Leg and Left hand (Partial wasting), speech slurring and a bit of problem in swallowing.
Till now, I was sure that it was ALS and hence we were working towards it.
2 months back, I met another Neurophysician who has confirmed it to me that it is not ALS but Syringomlyelia.
Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, can expand and elongate over time, destroying the spinal cord. Since the spinal cord connects the brain to nerves in the extremities, this damage may result in pain, weakness, and stiffness in the back, shoulders, arms, or legs. Other symptoms may include headaches and a loss of the ability to feel extremes of hot or cold, especially in the hands.

I am confused between ALS and Syringomyelia now and honestly don't know who to believe. My heart obviously says go with the new doc (cos Syringo is curable and ALS isn't) but going by the facts, all the other docs couldn't be wrong...

Is there anyone out there who has faced similar situation and could help me in suggesting next steps.

In distress...
Gary..
 

ltr

Senior member
Joined
Feb 11, 2007
Messages
690
Country
US
State
NY
City
Elmira
Hi Gary - I certainly can understand that you want to have some hope and I would also want everything else ruled out before giving in to a diagnosis of als. Is it possible the neuro who suggested syringomyelia could show you the lesion on MRI or other studies? I haven't researched syringomyelia myself, but there must be a basis for his diagnosis and if he could prove it to you, then you could consult the others about it. Good luck~Leslie
 

[email protected]

New member
Joined
Feb 15, 2007
Messages
8
Reason
PALS
Country
IN
State
Haryana
City
Gurgaon
Hi Leslie,
Thanks for your reply.
The problem is that my Dad had a brain surgery in 1976 wherein metal clips were placed in his head and hence I cannot get an MRI done for his head or spine.
Its too dangerous as told to me by the docs.
Another option is CT Milo but that may / may not help in clearning the confusion.

I am meeting another Neurodoc on Saturday to get more clarity between ALS and Syringomyelia.
Lets see what happens.
Will keep u posted.

Thanks.
G.
 

hboyajian

Distinguished member
Joined
Oct 31, 2006
Messages
267
Reason
Lost a loved one
Country
US
State
Washington
City
Vashon
This sounds like a confusing situation. If there is any chance for a diagnosis other than ALS, I think it is a good idea to search for it, especially if there is a possible treatment or cure available for another condition. What is the treatment for syringomyelia? If it is surgical, would the CT milo (is that similar to a CT scan?) be necessary to locate the cyst? If there is medicinal treatment, it might be worth trying to see if there is positive effect, which might indicate the illness is not ALS and further searching for the cause of symptoms should be continued.
When I was 9 years old, my family was in southern India (Alway, Kerala) for several months. My father was teaching a Biology workshop for high school teachers at the university. He has since died of ALS last year. Holly
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Gary. Has anyone done a spinal tap to check on this cyst. Would it also cause a rise in spinal fluid pressure that could be measured?
AL.
 

[email protected]

New member
Joined
Feb 15, 2007
Messages
8
Reason
PALS
Country
IN
State
Haryana
City
Gurgaon
Al said:
Hi Gary. Has anyone done a spinal tap to check on this cyst. Would it also cause a rise in spinal fluid pressure that could be measured?
AL.

Hi Al,
I am not sure what Spinal Tapping you are talking about.
Please do tell..
Will do the needful.
Thanks..
G :)
 

[email protected]

New member
Joined
Feb 15, 2007
Messages
8
Reason
PALS
Country
IN
State
Haryana
City
Gurgaon
hboyajian said:
This sounds like a confusing situation. If there is any chance for a diagnosis other than ALS, I think it is a good idea to search for it, especially if there is a possible treatment or cure available for another condition. What is the treatment for syringomyelia? If it is surgical, would the CT milo (is that similar to a CT scan?) be necessary to locate the cyst? If there is medicinal treatment, it might be worth trying to see if there is positive effect, which might indicate the illness is not ALS and further searching for the cause of symptoms should be continued.
When I was 9 years old, my family was in southern India (Alway, Kerala) for several months. My father was teaching a Biology workshop for high school teachers at the university. He has since died of ALS last year. Holly
Hi Holly,
CT Milo may / may not help but nevertheless, I think I may consult the doc and get it done..
Worth a shot huh. Thanks a tun..
Sorry bt ur DAD.
I live with the fear on a daily basis....:-(
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Sometimes called lumbar puncture. They put a needle into spinal cord to take fluid for analysis.
AL.
 

[email protected]

New member
Joined
Feb 15, 2007
Messages
8
Reason
PALS
Country
IN
State
Haryana
City
Gurgaon
Lumber puncture is the technique for Syringomyelia. I am aware of that.
Will def discuss it with the doc tomorrow.
Thanks Al.
Apreciate it.

Btw, on the othr hand, we are going to start a 14 day residential program for him on the school of Ayurveda and Herbal medicine and therapies. Not a cure but will provide symptomatic relief I am told. India has these hidden pockets of treatments that the rest of the world is not aware of.
Lets see.
Will keep u updated.
Ciao..
 

tmasters

Senior member
Joined
Feb 19, 2008
Messages
531
Reason
PALS
Diagnosis
08/2008
Country
US
State
California
City
Anaheim
Will keep u updated.
Ciao..

I was considering Ayurveda and emailed [email protected] for an update.
Here's the response he sent me and gave me permission to publish to the forum:

email from gjain said:
Hello Tom,

We did try the Ayurveda and herbal remedies.
Both claim to cure it when you talk to them initially but somehow that advocacy changes to " We can help in prolonging the disease".

I took Dad to this hospital where we stayed for almost 15 days, took ayurvedic treatments, medicines and massages which did give him very good symptomatic results (clarity in voice, less stifness in neck and back, glow on face and skin) but that didn't last very long. We went to another hospital after 2 months wherein we stayed for alost 10 days but did not get any result.

Moreoever, some meds also gave him allergies which completely depends on person to person and how accustomed your body gets to the treatment.

As of now, there is no sur shot claim in Ayurveda and Herbal meds....
Sorry to give you the bad news...
U can however try Yoga, it gives good results in giving you overall peace of mind and keeps your limbs moving.

My Dad passed away last month after staying in comma for almost 4 months. He had a cardio respiratory attack in Dec and couldn't recover from it.

You can post my views on the forum.

Keep in touch...
G...

Ciao..
 
Status
Not open for further replies.
Top