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tushar2709

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Hi,

I am from India, and writing this to explain my Father's(51 year Old) symptoms. He started having some problems in his right leg 4 years ago which slowly worsened and finally 3 years ago extensive tests including MRI's, Auto Immune, Blood reports, EMG's and NCG. Everything came out normal except the EMG reports which showed " Chronic Regenerative changes in all muscles" and "Denervation in Bilateral Gastroc". The MRI reports showed some protrusions in spine but the doctor here said they are unlikely to cause the symptoms and wrote a possible MND. After this my Dad went into denial and refused any medicine or treatment. In the last 3 years his condition slowly worsened to a case where he now needs a little support while walking but the problem is still restricted only in his right leg. We finally convinced him to undergo tests and consult doctors again and in the latest EMG report it shows " No spontaneous activity found in any muscles" and "Suggestive of chronic regenerative changes" . There is no denervation in the report this time. Now the doctors here after looking at these reports and his progression over the last 3 years say it might not be MND.

We have some good Neurologists here but none of them specialise in MND/ALS, and there are very few reported cases in India for the same and thus I am not very confident on their analysis. I am unable to attach the reports here. Please provide your guidance as we desperately need some answers. My apologies for the long message but I wanted to be elaborate with his symptoms.

Thanks
 
It does not sound as if the first emg met the criteria for MND although it is a little vague. The second one clearly does not look like MND which is great news.given the EMG I would look elsewhere. Perhaps another MRI?
Best of luck
 
@Nikki J Thanks a ton for such a quick reply. It gives us so much hope. The doctors here have also asked us to undergo some more MRI's. But just wanted to know in case the doctors here are not able to figure out the issue, I am planning to travel with my Father to USA. Could you please or someone else on the forum help us provide a rough estimates of medical costs of diagnosis there( Exclude living, travel and other expenses). Would need to plan as it would be a big financial decision for us.
 
I think it would be very hard to guess costs. I know several years ago someone came from Europe and had only a clinical exam. The initial charge was something in the thousands - a flat fee for overseas person having a diagnosis- but he objected and paid instead for the consult.

If you are thinking of this seriously I would get as many tests as possible done there. For example if you bring high quality mri discs they may only charge a fee to read if the radiologist needs to see them. Blood work may not need to be repeated etc. i would also contact some major centers and see what they say. No one can give you exact numbers but you might get an idea. I have seen somewhere recently a remote diagnosis program- a combination of record review and a tele- consult with patient and their home physician. I rather think this was not for MND. I have been researching specialists for a friend with another issue.

I might consider as well looking at places outside the US- Oxford,Sheffield and Dublin all have leading MND experts. There are certainly others. On the other hand, I do know people travel from all over the world to Mass General where I go and I am quite sure this is so at Hopkins and other big ALS centers.
 
I would not spend the money, as I don't think it would result in a treatment that would slow or end his already slow progression. There are some very slow MNDs, sometimes associated with Indian descent (though usually at a younger age -- did he have any problems as a young man?), but it's an academic exercise to guess. You might ask that his MRI, to consider Hirayama disease, be forwarded to this center, which has published on it:

Arun K Gupta
Department of Radiology, SCTIMST, Trivandrum - 695 011, Kerala
India
 
@Nikki J: Thanks, I was also recommended Mass General in Boston by some other doctors here.Also the remote second opinion if possible for MND can also save significant costs for us.

@Igelb: Thanks. I would contact the doctor mentioned and send my Fathers reports to him. We do not believe he had any problems before as he was very active in sports and played a couple of sport at a good level. One strange thing which happened though is that he was having some Asthma symptoms before but they have completely vanished since he started having this problem.

Once again I would like to thank you guys for taking out the time to answer my queries, it means a lot to me.
 
Dear Tushar

I am from India , the authority for MND in India is Dr Gouri Devi ,she is Ex Vice Chancellor NIMHANS also a world figure
she looks at Sir Gangaram Hospital New Delhi. Next to her is Dr A . Nalini Professor of MND at NIMHANS Bangalore , but it is a govt facility you have to wait for your appointment

Hope fully these information is suitable to you . Dr Gouri Devi is having a very satisfying consultant and final figure in India for opinion & diagnosis .Sabby
 
The MRI's came clean. Doctors again pointing towards MND only. Dissapointed. Have a monday appointment setup with DR Gouri Devi as suggested by Sammy. One question, I read that there a lot of other types of MND also, other than ALS.. How can we know which one he has and is there a possibility his symptoms might not spread very much?
 
The different MNDs are mostly classified by whether the upper motor neurons and/ or the lower motor neurons are affected. This is something the doctor would tell you after exam and testing. There are also MND classifications for disease confined to the bulbar area. Since this speech and swallow this is not your dad.

There are some subtypes as Laurie mentioned but even if the diagnosis is ALS progression can vary greatly among PALS. He has been symptomatic a long time. This is encouraging. Good luck with the appointment. Please let us know
 
Hi Tushar

It is understandable that you are going through very disturbed phase , but as you are going to visit Dr Gouri Devi she will have a proper diagnosis , there EMG doctor is Dr Samhita Panda
she is best equipped with latest facility,We pray God & almighty that he will be kind towards you and your family . Moday is also Ganapati Utshav in India , So you and your father will also be blessed upon by the Lord. please post development post appointment. Sabby
 
Had a checkup with Dr Gouri Devi today morning. She took almost an hour for checkup and observation, and according to her based on the MRI's EMG and mainly the clinical diagnosis it looks like MND. She noticed symptoms in both legs and mentioned there seems to be some signs in arms as well, but predominately it is still the right leg. She has requested a couple more blood tests and another EMG/NCV of some other muscles to check for other possibilities though. Although it looks like a slim chance now but hoping we can find out something which is treatable. She did mention though that there are several variations of MND and it has different rates of progression in different people, and our case looks like a slow progression. The main issue know is how to keep my father hopeful and in the right frame of mind, because even though he does not mention it directly I know he is in a pretty sad state of mind.
 
Dear Tushar

Very sorry to heard the Opinion , please carry on consulting and be positive if some treatable condition came out
 
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