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motorbik
19th July 2012, 01:44
i am new to forum hubby dx at beginning of July this year i have some questions and hope you can help although i know none of us have a magic crystal ball (wish i did) your opinions would be appreciated.

What sort of progression does mnd take symptoms wise hubby is als his symptoms started out as weakness in right leg with muscle wasting drop foot came next paralysis leg is numb muscle cramps and muscle twitches all over body he is extremely affected with balance needs walking stick or walker and is fatigued.

I suppose what i am asking is whats next? what should we be looking out for he has had couple of episodes of gagging but has no issues with head or arm or hand movements at this stage .

i appreciate it is different for each of you but we are trying to gather as much info as we can to be prepared and plan ahead second question is how do they or is their a scale to rate the level of progression and its speed?

jules

john
19th July 2012, 10:01
Hi Jules,
You will find no one can answer your question of the speed or direction of your hubby's disease. If you want to do it yourself there is a forum called patients like me. It is US based so the disease is called ALS . If you join you can complete a question and answer part which will give you something called an FRS score. If you put in the date of first symptoms and the current FRS it will chart progress for you. It is a rough and ready indicator if you want one. Some people plateau apparently with months or even years of no advance - look at Stephen Hawkings.

As to direction I don't think anyone can answer that.

It is difficult to plan ahead with the disease and it is really a question of relying on your professional support team to come up with answers to problems as they arise. If you ask them for information they should give you general guidance about hubby's future.

Good luck.

John

motorbik
19th July 2012, 10:17
thank you john do u have a link to that forum ? question what type does stephen hawking have is his spinal atrophy one we do understand everyone is different just trying to get our head around things all very new only got dx two weeks ago but had symptoms for 8/9 months it has been a hell of a journey so far hoping that by gathering info it will make the rest abit smoother

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