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Barefoot John
9th October 2011, 18:14
Firstly i really do think i need to change my GP as i have been getting extreme cramps and muscle spasms in both my arms.

Very bad pains in my left should and right arm between the should and elbow.

I told my GP through a call back and he has given me co-codamol lol, something is telling me that this GP really aint got a clue what im experiencing with the cramps and pains.

also im getting bad insomnia.

So before i go back to him. i am asking you guys for some urgent input regarding meds for this.

Also is their a form of data base that can tell me where GP's with very good knowledge of people with MND as i really am getting fed up with the one i have now.

Thank you.

John

Countyboy
9th October 2011, 18:37
Hi John, Try drinking the old fashion type of tonic water, this contains quinine and should help to relieve muscle cramps.
All the best,
CB.

computatec
9th October 2011, 20:15
Hi John,

The usual medication for cramps is Quinine tablets. I am not sure if this is a prescription only medicine or not, but you could check with a pharmacy.

Clive

Madbird
10th October 2011, 10:27
hi John

hmmm, sounds as if this gp has no idea! dont take more meds if u can help it. do u have any physio or massage? i have PLS and i cld not manage without both even though the nhs won't pay for either. i take tizanidine n diazepam and i do yoga and stretching every day, which is sometimes a hassle but really beneficial.

good luck

Louise

sarahezekiel
11th October 2011, 22:11
Hi John

I advise you to see a hospice doctor. They know much more about pain relief and normally have experience of treating people with mnd. Apparently, most GP's never get to meet people with mnd, so have no idea how to manage our condition.

I also had insomnia after diagnosis. If I could get up and read or watch TV, I wouldn't mind. Saying that, it's very important to get enough sleep with mnd. I take Clonazepam, which keeps me asleep for 8 hours. I don't have any side effects from it and couldn't cope without it now.

I agree with Louise that exercise is good, if you can manage it.

Hope that you find the right doctor.

All the best

Sarah

Barefoot John
11th October 2011, 23:16
Hi Sarah, the GP has put me on Pregabalim which some how i dont think its going to works as you are very correct in the case of my GP,

Everything related to MND he consults his computer to get advice,

I dont know if the hospice can prescribe medication or do i have to wait to i see my consultant in a few weeks time?

I have been told as im still in early stages, everything im experiencing is only the start so they dont want me on meds too early lol

Again its when i am in desperate need then i will get,

Well excuse me, i think that not getting enough sleep and then have to look after my two very young boys is not a good enough reason then what is?

i will keep you informed about it as and when i get some help

And to think having MND was cruel enough but not given any thing to help with the crap that comes with it, what else am i supposed to do

take care.

John

sarahezekiel
11th October 2011, 23:40
Hi John

Your hospice should have doctors that you can see. They can prescribe anything that you need. I only see my hospice doctor now. No consultants or GPs. It's made my life much easier. Can you find out whether you can see a doctor at your hospice? Your best hope is your hospice. My doctor is very happy to prescribe drugs! Hospices are used to managing terminal illness.

In my opinion, the key to managing mnd, is adequate nutrition and sleep. I know how difficult it is to care for young children. I was getting up at night to feed my baby and progressed rapidly. You need all the help that you can get. I would ask children's services to give you some help with your children, so that you can rest. Or even someone to help with the housework or shopping. You can't be expected to do everything alone. Try to get some help in place now. It will really help you to cope.

Best wishes

Sarah

luce
12th October 2011, 00:15
i know my mum drank tonic water when her cramps were around

think all the response are very wise- and it seems that you need to find someone (either a professional or a friend) to start advocating and pushing for services to be put in place, anticipatory not too late as it will only make it a nightmare for you and your children

all the best
Lucy

john
12th October 2011, 00:50
My wife Irene had cramps in the early stages of her illness. The doctor prescribed Quinine Sulphate tablets which cured the pain straightaway. Only returned the one night she forgot to take one. He said you would need 200 Gin & Tonics to get the same amount of quinine. This was a less expensive alternative. Can't help on the sleeping as Irene never has a problem.
For more advice try patientslikeme- they have a community of 5 or 6000 and are very friendly and helpful. If you want some hope of a cure try als tdi. Look at the thread on oral sodium chlorite.

John

soniamm
12th October 2011, 03:06
Hi barefoot John,

Baclofen for pain and quinine for cramps, both work well, I agree with John above that quinine has a real impact and yes you would need an awful lot of tonic to match the medication.

icingoncake
12th October 2011, 11:03
John,

I would try the tonic water... bt maybe put some gin in it, too!

I would maybe suggest your gp rings the MNDA. i know they help health professional peolpe too. we spoke to them about my husbands gp and i think they sent out a pack to the gp surgery but i might be confused about that as a lot was going on at that time - i knw you understand about that!!!. I suppose mnd isnt something the gp will see every day thank god.

I will keep my fingers crossed for you that you get someone you have confidence in - that is the main thing that you trust the people who will be looking after you

Barefoot John
12th October 2011, 14:26
Thank you all for your advice but i just had a visit from my MND nurse and she was so concerned to what has been happening to me recently that she reported back to my consultant in Kings college hospital.

He was "alarmed" at the stress levels i have experienced regards to getting help both physical, emotional and financially that he does no longer what to see me on the 27th of this month.

Instead he wants to see me 9.30am TOMORROW!!!! at kings.

I think i need to be concerned as its a bit short notice, but i have been for many weeks trying to get all the support but have had to refer etc all by myself as no one really cares in the end and im sorry i do get that impression that no one really gives a toss about me or my little boys,

Due to all the extra very unnessersary stress i have been put through recently that my MND which has stayed very dormant for 2 years in one arm has now accelerated so fast that its in 3/4 of my right arm now and my legs are feeling wobbley now.

I can say that action is going to be taken against those who did not offer the help when it was required.

putting very bluntly I AM SO P**SED OF WITH SO MANY PEOPLE NOW.

Crazy girl
12th October 2011, 17:55
John,

I'm so sorry to hear everything that's been happening with you but glad that your consultant is concerned enough to see you. I would try and see it that at least he cares and will hopefully help you out as much as he can.

I really hope that things start to get better for you and I can't imagine how angry you are at it all.

Please take care,
Tracy

Barefoot John
12th October 2011, 19:21
Thank you Tracy,

yes it seams the only people who do really care are you guys on the forum, my new very fast acting social worker, my MND co-ordinator (she's a diamond) and yes my very concerned consultant professor Shaw (top man).

I might now get the help ive needed for so long..

John

soniamm
13th October 2011, 08:23
Hi John

Kings are brilliant, the neuro team are just so accommodating, you will find they will fight your corner; don't be concerned at the short notice this is typical of the care they provide.

Barefoot John
13th October 2011, 14:14
Hi all,

Yes Kings are the best in my eyes as yes you were right it was just as i asked for help and they and the rest of the neuro team saw me the very next mornig,

I got to see a professor as i still have to see my own professor Shaw on the 27th of this month,

He has agreed that my MND which has stayed dormant for nearly 2 years has now moved in to my right arm and signs of it in the top half oif both legs but hes not too concerned about my legs at the moment.

I also saw the physio and they gave me some hand braces to help me grip which i find hard and it works very well, im impressed about such a simple glove thing can do so much.

I saw my MND nurse who will introduce me to the community side of MND nurses and team.

The professor does agree i should either be on Beclafen or Riluzole (sorry about the spelling) but he will wait to i see my own professor later this month to prescribe either one.

And to top it all i will get my DLA form signed and also sent in with a DS1500 as he said im entilited to it now and should get what other MND people are getting now, so im extreamley pleased now as at last things are looking and getting better apart from my MND

Crazy girl
13th October 2011, 21:02
John,

How wonderful that you are finally getting help!

I am truly truly appalled with the fact that you have had to struggle so much just after being diagnosed.

Really pleased things are getting sorted now.

One question though - Why do you need to wait for riluzole, if you have been officially diagnosed with mnd you need to get it now?

Tracy

Barefoot John
13th October 2011, 22:10
Hi Tracy,

The reason why he wants me to wait as the GP already prescribed a nerve pain relief med, but he would rather wait till my own professor sees me rather than give me the one that my professor might not give me.

Its a matter of not trying to tread on each others toes etc and i am happy to wait for the meds as the one im on is working quite well.

Oh and i was told that Riluzole is normally used for people with ALS and this professor thinks i dont have the ALS variant but more the same as my mother had (PLS) but he would rather leave the diagnosis to my own professor.

So all is looking a lot better now.

Cant wait for my DLA and back dated payments as then i can really spoil my kids at christmas.

John

Toppers
13th October 2011, 22:11
Hi John
Glad to see you are now getting the help you so much needed and this will help you to relax a bit and not get so stressed. I have been following your posts and nice to see you have the fight in you even though you have had it rough over the last year or so.

Pete

Barefoot John
13th October 2011, 22:43
Thanks Pete, i never give up fighting , thats the ex solider in me lol,

I am a firm believer in getting and fighting for whats rightfully mine or for others.

Im a typical gemini, we dont rest till its sorted and no matter who or what we take down, we always win in the end lol

But otherwise, i am getting so much more relaxed as the hard work has paid of but maybe accelerated my MND but we will leave that to a coincidence there !!!!

John

miranda
14th October 2011, 13:10
Was thinking of you yesterday and wondering how you were getting on., You sound so relieved now that there is some positive action, hopefully some of the stress is reduced.

Barefoot John
14th October 2011, 13:19
Hi Miranda,

Thank you as i said before and will say it again, its the people living with MND that care the most.

Yes my stress levels have dropped dramatically now that things are moving.

I got a new social worker and in less than 2 days she got my home monitoring alarm system installed in my home, keysafe to follow on monday.

Medically, things are not going too well but all was expected there.

But the cherry on the top was the extreamly positive and productive meeting i had this morning, so not wanting to say to much or give us (the unfortunate) false promises, it went so good i did not believe it really happened,

But otherwise im doing ok and my kids and i are happy :)

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