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View Full Version : MESTINON.......someones on??



Alienista606
19th May 2014, 14:41
hi
i sow on EU some people whit MND receive this.....
how is in UK???


http://www.netdoctor.co.uk/aches-and-pains/medicines/mestinon.html

pete
19th May 2014, 16:14
Hi Max,

Yes it's available in the uk ,it's primarily to treat myasthenia gravis , which I was being treated for until the powers that be promoted me to the biggy !!!, and I know of others taking it as myasthenia is similar To MND , in many respects it's another suck and see job , as there is little else available why not take it,if it helps all the better.

Pete

john
19th May 2014, 22:50
Hi Pete,
That is maybe why you are a slow progressor!

John

pete
20th May 2014, 12:33
Hi John,

Just wished I knew , originally to be told you have a condition you had never heard of ,then after two years of what seemed that very little other than my speech affected it seemed to me as if Mestinon was working ,however I was never told exactly why they decided it wasn't MG and now MND but I remain very sceptical if they really do know for certain what I have , if you last longer than the forecasted time your said to be lucky !!! If you pass away they say it was as expected, either way don't make a lot of difference to the Doctors, just another one for the statistics .

Pete

john
20th May 2014, 16:30
Do you still take the Mestinon?
Thought you were moving today!
John

pete
20th May 2014, 17:16
Hi John,
No the big move day is the 20th next month , the wet-room and other bits are being done before we move ,so fingers crossed, yes I have been taking the Mestinon nothing to loose by trying ,as for if it's doing anything ,how can you know apart from when you wake up in the morning !!!

Pete

jenbuckfin
22nd May 2014, 16:12
Hello,

Do you take this as well as rizole or instead of?

Thank you

Jen

john
22nd May 2014, 17:04
Hi Pete,
Given that you have bulbar onset which has the worst prognosis in terms of life expectancy either you were misdiagnosed or something is making a difference. Maybe is the Mestinon. I wonder if it has ever been trialled. Do you get it by prescription?

John

pete
22nd May 2014, 17:13
Hello Jen,

Well I take it with Riluzole ,as it comes under the heading of not prescribed drug for MND it's down to you and if your doctor will prescribe it ,I tend to think that because I took it for some time before ,it had no side effects in my case, but you will need to be monitored by blood tests initially also follow the staged dose age if you have not taken this before to prevent any issues, good luck if you do try it ,it's no magic pill but as there's nothing available at the moment ,I guess anything is worth trying .

Pete

pete
22nd May 2014, 17:39
Hi John,

Yes it is prescription , after a chat with the doc , given that I was taking it before for very very similar symptoms and after I was taken off it and given Riluzole things did progress but as both MG and MND are progressive it's difficult knowing exactly what if anything works as the changes are slow and difficult to say if it's down to either drugs or just the disease doing what it does , as you say my diagnosis and being told max two years, now nearly six ?? So a bit reluctant to think anything really just thankful I got to see my granddaughter enter our lives and two years of the best memories I could wish for , so whatever it's down too just hope it continues at this pace or me being greedy stop !! , but that is very much wishful thinking.

Barry52
22nd May 2014, 19:05
Nothing wrong with wishful thinking Pete. It's what gets us all through day by day.
I have just spent 3 hours with friends collecting for MNDA at an Asda store and although my bum is sore through sitting on a hard chair I feel great.

Best wishes to all forumites.

Barry

Joan
22nd May 2014, 19:36
I also take Mestinon four times a day because, like Pete, it was prescribed when it was thought I had myaesthenia gravis. But then, lucky me, they decided MND. I find more help from Mestinon than Riluzole, the two don't mix for me, so rightly or wrongly I left Riluzole off. Who knows what's best? Joan

pete
22nd May 2014, 20:39
Hi Barry,

Yes I know the feeling well ,I don't have much padding down there anymore so sitting on any hard surface can be really painful,good for you doing the collection bit , I used to spend hours in the Asda stores looking after the Alarm systems happy days and met some nice people and some really awful customers any shop workers deserve medals for putting up with some customers, hope the pains gone !!!

Pete

pete
22nd May 2014, 20:47
I also take Mestinon four times a day because, like Pete, it was prescribed when it was thought I had myaesthenia gravis. But then, lucky me, they decided MND. I find more help from Mestinon than Riluzole, the two don't mix for me, so rightly or wrongly I left Riluzole off. Who knows what's best? Joan

Like you say Joan ,who knows what's right or wrong ,I hope it continues working for you , pretty much certain it won't harm you as for Riluzole that's another area ,who knows what it does,and if it works for some all the better ,all I do know Mestinon did something for me so will keep taking it , take good care of yourself.

Pete

john
23rd May 2014, 00:09
Hi Pete,
I did a search for a link to mnd trials and they don't seem to have been any. Seems amazing as MG and mnd seem to be similar illnesses and obviously your doctors were confused between the two. If it helps with one it must be worth seeing if it helps with the other or is that just my simple mind. Looking as if it was trialled for other conditions in the late eighties.

John

ccinjersey
23rd May 2014, 01:28
Maybe Doctors are still confused Pete, and made mistake in your favor! Wouldn't be the first time these clowns got it wrong! I work with them on a daily basis they are often baffled and confused. Can't tell you how many times they have to find the answers on the internet off their cell phones.

I actually watched two of these clowns with their heads down so involved in their cell phones looking for the answers they collided into each other head on! It was hilarous to watch I must admit, because I saw it coming but refused to warn them! LMAO!!

Always hoping for the very best for you and all :)
CC xoxo

pete
23rd May 2014, 13:29
Hi John,
While I was waiting for the referral to the QE ,my neuro at the time admitted MND wasnt her specialised field hence the need for a second opinion , why she thought it may be something other than MG was never explained ,not that I would have understood the jargon ,but just thinking as a layman ,considering Mestinon has been around for fifty years or so and it does work in MG I couldn't understand why it wasn't tried in MND patients as Both MG and MND have very much similar symptoms more so with the speech ,swallowing problems ,that Riluzole seems to do nothing positive , I tend to go on the advice of specialists, but being honest in my opinion No one really knows what to do ,so they do nothing !!!, now not sure if that's just litigation worries or just not willing to try treatments because of costs or some other reasons, I just think it's despicable that they would let folk die rather than try drugs that exist ,maybe non will work ,but if one did just one would justify the effort from them, meanwhile all the symposiums,meetings,endless new leaflets,advice and, good will, in the end mean very little if your unlucky enough to have this disease.
Anyway you have a good day and stay safe.

Pete

pete
23rd May 2014, 14:14
Hi CC,

What you say really don't surprise me , what all my dealings with Hospitals over the last few years has taught me is above all else you really don't want to ever be ill, !!!! Far from my previous thoughts that whatever life may throw at us ,we can always rely on the Medical Profession to fix us , Luckily only ever been into Hospitals in the last five years or so , and they have failed dismally to put me back to health, I have however gained a totally numb left side of my face and neck ,can't turn my head to the left without pain, a partially blocked artery is now completely blocked after surgery, not content with that they then told me I had MND just for good measure, thinking back up till now never been ill, and the only good thing to happen was to be used by four female student nurses as a practice patient for catheter change ,the smile disappeared shortly after as they removed two surgery Drain tubes from my neck ,to this day I can say never felt a feeling like that since and never want too again.
As for our Doctors ,they seem to gather at the foot of your bed ,never really look at you, but huddle and whisper looking over their shoulders just to see who is watching, then slope off without a word !!!, to the next poor soul , and worse still is none look old enough to be out on their own ,let alone be responsible for your life.

PeteXXX

john
23rd May 2014, 14:37
Pete,
I so agree. Most patients with mnd would be glad of any visible effort to extend their life but instead all that is offered is nothing. Such a depressing diagnosis.
Alstdi believe that the only success will come from a cocktail of supplements and drugs. They further feel that different types of mnd will need different cocktails targeting the main areas affected. It just seems incredible that all they seem to offer patients is Riluzole after all these years and all these millions.
Hope you have a good day and the builders are getting on with the job. Another group who seem to over promise and over deliver.
John

ccinjersey
23rd May 2014, 18:43
Must agree as well, all so very true. The last place an ill patient would want to be is in a hospital ! Really don’t mean to offend this profession, they do remarkable life saving procedures, and for the most part out to do good. Although they often seem to forget the person behind the illness, and up against mnd quite clearly have been failing miserably for an awfully long time.

Pretty much the same scenario here as well in our hospitals Pete. A group of young babies at the foot of a patient’s bed, chatting in their medical language, and then off they go. Leaving the patient just as confused bewildered, anxious and scared as before.

What I find also find a little puzzling with this illness and the medical profession is their do ’nothing’ approach as John said. After given diagnosis from two top doctors both specializing in als, my friend was told to follow up with team in three months. That’s it!! See ya in three months! ? Meanwhile further progression of illness is happening while my dear friend is trying to adjust mentally, emotionally and physically while also trying to accommodate her lifestyle to these changes. I’m not exactly sure what the medical profession should be doing to assist with all this, but is certainly seems like ‘nothing’ is not the right approach.

This makes me think of this great movie called ‘Patch Adams’ with Robin Williams (so of course some hilarious moments) if never seen it before it’s worth renting. True story about a man who wants to become a doctor, yet can’t stand the practices of the establishment. Therefore creates his own unique style of practicing medicine. Very enjoyable :)

CC xox

Joan
23rd May 2014, 19:17
I have just received a routine appointment with the neuro. It will be the same as thè others., write a morning off, load up and get there, struggle to park, wait ages to see him. He will note the deterioration, tell me to do what I can while I can and rest. Back out, rob a bank to pay hospital parking and home tired and irritated. I wish someone would pay me his salary to mouth platitudes. Me, cynical? Never! Joan

pete
23rd May 2014, 19:37
Evening Joan,

Sounds very familiar , just very much like mine , the one change that's supposed to make you feel better is when they say you can leave it six months till your next appointment !!! How you view that one will prove if your a true cynic , for me I take it as it don't really matter how often you go ,it's always the same whenever you go.

Pete

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