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Mr-Tumble
26th October 2011, 14:09
I just received a letter from my hospital from one consultant to another

Its a second opinion even though i did not ask for one !!!

My normal consultant was thinking positive and thought i might have the same as my family members of the PLS variant which i suppose is the best to have but none would be the very best

But after reading the letter the consultant agrees with his findings and with the test results that i have ALS and not PLS :(

It's a bit of a shock as i was hoping a longer life but i guess my time will come to an end quicker than planned :(

Dave

angnmick
26th October 2011, 14:42
Hi Dave
Glad to see your neuro is double checking everything at his end, but sorry for the disappointing news as you said " None would have been the very best" xx Ang

Mr-Tumble
26th October 2011, 16:27
Hi angnmick. (Ang)

Yes i am now under Kings college London and there team is so fantastic

The Neuro team are in my eyes the best around and are very quick at sorting anything out even though i did not ask for a second opinion but still got one !!!

for myself and all others with MND no matter the variant, the best one IS NO MND ..

Dave x

indiesue
26th October 2011, 20:20
Hi Dave,
Sorry to hear that you have ALS and not PLS, but as you say no mnd is the best result. I remember when i was diagnosed with ALS it felt like the end of the world, and although i have had some dark times,i feel very much more positive now and try to do as many things with family and friends as i can, and who knows with all recent research they may have answers for us very soon.
Hope you go on ok you will be in my thoughts.
Sue x

Mr-Tumble
26th October 2011, 20:50
Hi Sue,

It was not a shock as such as i expected i had MND but did not know which one i had

It was looking very promising that it was PLS but now i know its ALS but even now im told its very very slow moving

2 years in one arm and can use the arm well but hand loses its grip

I have a hand splint and now i can use my hand

its still looking good :)

And im booked in for more gene test for the chromozome 9 variant tomorrow as my MND is very very slow moving.

Dave

indiesue
30th October 2011, 20:03
Hi Dave,
Mine started in my right leg, 2 years ago i did a lot of Ultra running races and i started tripping, but over the last 2 years i now cannot walk very far or unaided,but i am determined to keep on walking as long as i can. My progression has been slow to and it has just started to creep into my right arm, its not bad seems a little stiff and if i do a lot of lifting it fatigues more easily then my grip and dexterity is poor. Can you tell me how does the splint work, and help if that's not a stupid question.
Thanks Sue

Mr-Tumble
30th October 2011, 22:46
Hello Sue

I think we have got the same but the other way around!!

I am the same as when i do any heavy lifting it fatigues very quickly and the grip is pretty useless for a while but sort of comes back to a sense of use.

I got the thumb restrictor splint from my hospital OT and now i can grip very well with confidence so yes you should ask for one, there are many types and im sure one of them will help.
Even though i have just been told i have ALS im pleased its a very slow progression so it gives me more time to do all i can before i get much worse.
At the moment i have been told that my reflexes are absent in all 4 limbs but so far my legs are fine and i can continue to walk very well for long distances without any aids but its my arms that are starting to show weakness.
Take care
Dave

Jeannie
31st October 2011, 09:06
John,

You might want to question the absent of reflexes because usually in ALS patients they have abnormally active (brisk) reflexes.



At the moment i have been told that my reflexes are absent in all 4 limbs

indiesue
2nd November 2011, 18:26
Hi Dave ,
I agree with John, my reflexes are very brisk in all of my limbs, and from what i understood from my diagnosis this was one thing that happens with mnd patients but as we know it is a very complex disease and we all differ.
Thanks for the info on splints i will certainly ask about them.
Take care Sue x

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