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Pupkin55
9th April 2018, 19:55
Hi my story is quite long sorry , I started visiting my doctor in June 2017 with pins n needles in leg, no action taken.
This has continued until now, with pain and pain in left shoulder n I noticed the grip on left hand very unusual. I also have pins n needles in right foot n ankle pain.
I feel my chewing is difficult , I have been to the doctors at least 15 times got diagnosed with anxiety , I'm a reasonably intelligent woman I'm 46 and I know when something is wrong, I have finally been given a nureolgy appointment for June but I'm doubting at the moment I will get that far .
I know it's dramatic I've been to a/e 3times but no one takes me seriously n I look on line and I think it could be mind.
I have a left hand foot shake when trying to drive can't hold foot on clutch.
I'm feeling quite desperate sorry if I upset anyone who thinks I'm crazy .

John Mc
9th April 2018, 20:05
Hi pumpkin, your certainly not crazy but getting diagnosed with MND can make you feel that way and worse, you may not have MND so I would try and put that to the back of your mind for the time being, I pray you don’t have this dreadful disease, I hope you get some other diagnosis.
Best wishes, John x

Pupkin55
9th April 2018, 20:42
Thank you for replying , it's very kind of you. It's hard not to worry.

Barry52
10th April 2018, 09:51
Hi Pupkin and welcome to the forum.

What you describe may not be MND however many of us have experienced the frustration of delays in the method of confirming the illness. There is no biomarker for MND so the medics have to rule out all other possibilities first.

I hope you get a good result and remember that June is not far away. Stay safe and best wishes.

Barry

Pupkin55
10th April 2018, 10:21
Thank You, it's just a very scary lonely place to be and I feel the doctors have only just started to listen now I can't drive my car. Thank You , it's very kind of you to reply.

MNDConnect
10th April 2018, 10:58
Hi Pupkin

I'm sorry to hear that you have symptoms which are worrying you. Pins and needles aren't usually a symptom of motor neurone disease (MND) as they are caused by the sensory nerves which aren't affected by MND.

If your GP has diagnosed anxiety, have they suggested any treatment or coping strategies to try to help to improve this?

Please do feel free to give us a call here at the helpline to discuss your concerns. Sometimes it can be really helpful to talk through your worries. We are available on 0808 802 6262 which a Freephone number from both landlines and mobile phones.

Best Wishes

Rachel

Terry
10th April 2018, 11:46
Hi Pupkin;

As others have said, your symptoms could fit a number of different ailments and diseases. It is quite unlikely to be \Mnd and I hope you are only a temporary member hear.

It is awfall just waiting for an appointment 10 weeks away.

Best wishes, Terry

Pupkin55
10th April 2018, 13:45
I got given some anti depressants that's all really, I'm sorry if I'm in the wrong place it just all seems to fit into place when I think what it could be. But you are all very kind for replying it means a lot to me.

chebs
11th April 2018, 12:27
Hi Pupkin,
Do not apologise for your concerns, its not about being in the "wrong place" its trying to understand whats going on... I have been there and now I've been diagnosed, in a strange way its given me something to fight. Knowing I,m not going mad or having the feeling that your wasting peoples time (A&E, Doctors)
But this condition is very hard to diagnose...
With me, I was working within the NHS, when they thought I had hydrocephalus (water on the brain) they said have shunt all sorted!! May 2016. After numerous tests,MRI,Dat Scans,bloods, Lumber puncture they diagnosed me with FTLD in December 2017. Later in March 2018 neurologist said wasn't sure about the FTLD, possibly another form of Dementia, but I have been diagnosed with MND and waiting on results for other Dementia??? in April.
So as you can see, things are never straight forward, it all takes time unfortunately. I really hope that you don't have this condition and it could be anything with those symptoms.
June isn't too far away, I would write down a list of everything that's troubling you, give it to the neurologist and be guided by him.
Hopefully. you'll get some answers.
Sorry for going on, but hope it helps..
" Look up to the stars, not down at your feet" Stephen Hawkins...
Take care
Chebs x

Pupkin55
11th April 2018, 13:39
That's very thoughtful of you to reply to me as you have Cleary a lot going on there and you must be strong to deal with all that I know you don't have any choice but I'm sure it's tough. Well I have asked for my appointment to be arranged quicker but they won't budge so I guess I will have to stick it out for now. I will write my concerns down Thank you that is a good idea. Best wishes to you too xx

chebs
11th April 2018, 19:27
Hi Pupkin,
Good luck and keep your chin up.... Let us know the outcome, hopefully you won't have to join us MND sufferers! fingers crossedX
best wishes
Chebsx

Pupkin55
12th April 2018, 16:16
Thank you all for your kindness , yes I will do that let u know , I wish all of you lots of love and best wishes and Thank you all for taking the time to reply .

chebs
17th April 2018, 19:33
Hi Pupkin,
Just a quick thought might be worth asking to go on the "cancellation list" ?? most clinics have them. It costs the hospital if appointments are missed, so they'd rather fill them. (I use to work within the hospital environment)
It may mean any day or time,but worth an ask... Just a thought:)
Take care
Chebs xx

Pupkin55
21st April 2018, 08:55
Hi I've got my appointment for this weds at the hospital I had doctors appointment yesterday as I'm really struggling with my feet last few days and all about given up with my driving I find it too much hard work , so we did some new motor skill tests and he said my co ordination isn't quite right when walking so hopefully I can find out something or at least start the process alot quicker now, best wishes to everyone xx

Terry
21st April 2018, 11:22
Hi Pupkin;

Sorry to hear about your continuing problems and the driving but it's good that you are have a hospital appointment on Wednesday.

Love Terry

chebs
23rd April 2018, 16:57
Hi Pupkin,
Great news about the hospital appointment!!
I too have a important appointment on Tuesday with consultant etc to see what else is going on with me?? Also, get to meet a Doctor of MND too.
Just another thought,maybe see about getting an automatic car, so you stay mobile...:)
Keep us informed!!!
Take care
Chebsx

chebs
25th April 2018, 18:15
Hi anyone,
I'm feeling so alone, husband great and family, but went to my meeting expecting results of all the tests, instead was broken, crying and very upset...feel like a fraud...
Having firstly told by one neurology consuItant I have Dementia(FTLD) then told by another not sure it's that type. Also, was told likely PLS form of MND,Now told possible MND, maybe something else!! 4 years!!! I can't take much more, I know it could be better outcome though the pains,crasps, stiffness,balance,drooling and fatigue, then on top short term memory.
I went to a coffee morning today, didnt want to go, but was quite informative, they have advised me to go for a second opinion??
Sorry, but all I hear is Cancer!!! what about us!! MND (maybe suffers)
I'm fed up of keep telling my medical history, feel like I should carry a plaquard with details round my neck ( not practical at mo, too painful) Oh well, maybe this rant will help, but tired and numb from it all today, just want to stay home and let the world go by.
Regards from
" A deflated Chebs" x

Tim-griffiths
25th April 2018, 19:51
Hi pumpkin
I hope and pray that you have this horrible disease and you need to go through all the test, get the results first then you will know what you are dealing with and can act accordingly, I have my fingers crossed and will pray that the results come back as something simple like trapped nerves, but with the symptoms you describe it could be anything. Get the results and then hopefully that will free your mind of worry
Thinking about you
Tim

Terry
25th April 2018, 20:02
Hi Chebs;

Tiredness and bad news days do make us deflated.

Since christmas my Mnd seams to have progressed quite a lot probably due to two bad coughs and a virus, plus two quite bad backs for a week each.

Still I have been getting my spirits up until about a week ago my tooth had a great pain and a few days after that I had my toe nail cutting into my toe. Still went to dentist yesterday and he cured the problem, well until half way through my dinner that night.

Been to doctors this morning and he gave us some cream and has forwarded my towards two different specialists.

So a bad year so far, still we have to live and keep going with a smile, I guess.

I know I'm not anywhere as low as you Chebs.

Hugs Terry

Tim-griffiths
25th April 2018, 20:02
Hi Chebs,
You have your rants, believe me I've had a few since the wife was diagnosed with mind In october of last year , as I'm sure everybody on here at one time or another has, to be told you have any form of mind is a hard knock to take, it's a cruel, horrible disease, and there are people on her who will listen and try to help if they can, me included even though I'm really still learning myself, you get to much information to process it all, this site helps there too.
Have all the rants you want, it sort of relieves a little of the release of the mixture of emotions you are going through and hubby is probably suffering as much as you are at the moment.
Take care and visit here when you need a rant or advise always someone who can help
Tim

chebs
25th April 2018, 22:00
Hi Terry,
Oh toothache, not nice.. hopefully your sorted now and carry on enjoying your dinners.
Its nice to have this forum to rant and to know we can support each other. I know this is a long process just hard to keep repeating myself especially when I have trouble with my speech, then when I leave appointment I remember something else thats been happening.
Anyway, nice to talk again
Chebs xx

chebs
25th April 2018, 22:11
Hi Tim,
so sorry to hear it's your wife that is suffering. As you say my husband is trying to deal with me and also his emotions. This is not easy but at least we have each other and we can support each other..
It was about the same time as yourselves that we were told I had Dementia, and told to do my bucket list!! Then early this year possible form of MND as well... still ongoing prods and pokes, it is draining...
Anyway, thank you for answering my blog and hopefully we can support each other
Regards to you both
Chebs x

Terry
25th April 2018, 22:33
Hi Chebs;

I always list or write the things that I want to ask people, it takes the pressure off of talking etc. One thing is, if you give a A4 sheet to most people to read, they scan it and don't answer most of your important points, so I fold the sheet up and stick to one point before I let them see the next or print several sheets with separate points on them.

It would be probably good for you to take a recording device in with you to record everything. You will have to say to them why etc.

Love Terry

PS:- Dentist appointment 21st May unless I can't eat or it is painful

Tim-griffiths
26th April 2018, 06:21
Hi Chebs,
Having each other, especially now is so important, are you suffering from emotional liability too ?, Only ask because the wife suffered badly, crying at the least little thing and was given citalopalm which has worked wonders for her .
I hated doing Mary's bucket list, it seemed to make everything become real instead of just a bad nightmare that you wake up from, for me personally it was when she said she didn't want to be resuscitated that this nightmare of a disease really hit home . Have you had a peg or rig fitted yet ? Whenever I'm here will always listen or chat and try to help as much as I can. Be strong and do all you can together while you are still able to function
Best wishes and support
Tim

raymond
26th April 2018, 09:29
Hi Terry
You certainly are going through a bad time , but we know this disease is no picnic ! One thing after another it is relentless and I am only about a year into it .
You seem to have a great attitude and are very positive outlook, and help everyone on this forum .
I wish you all the best and hope the latest things soon get resolved.
Keep smiling and take care
Love Chris

Terry
26th April 2018, 12:17
Thanks Chris;

There are so many things that Mnd affects, most directly but some indirectly.

I could not control the speed and pressure of my bit reaction and sometimes they would just snap shut and damage the teeth.

I have been sliding my feet along for years and I can't stop my right foot angling out and the big toe sticks down a little. All this and the fact that I tend to bear a lot of pressure on it when balancing and that I've lost the toes size etc means that problems are likely.

Just two of many things that I have that would seem unrelated.

Still toe feels better but I have not used it, shoes soon and then gym. Fingers crossed, well that's another thing with hand cramps, my fingers would rearrange themselves into shapes that normal people could never do.

Love Terry

chebs
27th April 2018, 14:34
Hi Terry,
I think I might try your idea... as I do seem to suffer with short term memory...
Sorry to hear about your teething problems, I hate dentists!! so I will be thinking of you on the 21st:( though I must admit to some tooth ache myself..husband gave me some chocolate and I had some pain in back molar!!! (his fault) not rushing to the dentist yet!!!!!!
Well take care and talk soon, at the moment just having contact with people here as feeling delicate at moment..
Regards Chebs xx

chebs
27th April 2018, 14:54
Hi Tim and Mary,
I think I'm suffering with my emotions at the moment, look in the mirror and don't know that person staring back, I seem older and fatter, husband Alan says I'm still beautiful and the same woman he married.
I know at the moment its all "up in the air" with more dignosis, so Ive decided to take a day at a time, Yesterdays gone and tomorrow's promised to no one, so live for today....
I too mentioned resuscitation to my doctor in front of Alan, he felt the same, realisation of this disease. I had my neurology nurse mention peg feeds?? which she said, we could talk about in a few months I must admit it came as a shock to me.
apparently better to do when your well, than waiting for problem with swallowing..
Give Mary my love and tell her to stay positive, sometimes being the patient can be very difficult, I know I hate asking!! for help, been independant up till now
Like you Tim, always here for rant, chat or to listen
Take care of each other
Chebs xx

Pupkin55
2nd May 2018, 17:18
Hi , just been reading your posts, I'm so sorry you feel so low , I think you are a very brave lady and you have taken the time to message me even when you have got so much to deal with yourself, I didn't get any answers at my appointment I haven't replied as just having a think about where I go from here as still have all the symptoms , they may give me a mri scan but it's unlikely , I wonder if I didn't explain myself very well because i have a body that's not the same as it was last year n I feel quite sad that I'm seem to be the only one who can tell , driving is still useless , I hate doctors n hospitals I'm not an attention seeker so I think why do they think I enjoy going to the doctors so much , Thank you all for your thoughts I wish you all the very best and love , I think I prob came out the hospital disappointed really .

Tim-griffiths
2nd May 2018, 18:56
Hi Chebs and Alan.
It's best to have the peg fitted while the body can still take the operation, I have to clean it, twist it and flush it every day even though she not being fed through it as yet, being able to swallow liquids, she was diagnosed in October last year and the peg was fitted this January, about 4 months after diagnosis.
I think I know what your saying about looking in the mirror, Mary was the same and had started pushing me away when I went to give her a hug or a kiss, and cry over the slightest thing, but she has changed a lot since taking the citalopram, accepting hugs and kisses, I tell her everyday I love her and together we will fight this terrible disease, even if there's not really anything I can do to help except give her all my love and attention.
She took a fall on Sunday and had to have 5 stitches above her right eye, I must confess this scared both of us, Mary because she finally realised that she's not 100 % steady on her legs now, although she still has mobility, needing frequent rests, but she refuses to give in and me because of the amount of blood and her uncontrollable shaking.
Mary and myself have, like yourselves, have never asked for help, maybe just the odd tenner until payday, we soon found out you have to ask because nobody is free with the information required, I found out on this forum what to ask and who to ask, which after the initial embarrassment asking gradually become easier, mainly through necessity.
At the moment we have a wonderful support team looking after Mary ( and myself ) from the cns, dietitian ect to the carewatch team, even the council have said they will do all they can to help ( not holding my breath on that one though
listen to Alan when he tells you that you are still beautiful, he is telling the truth, take care and all our best wishes
Tim and Mary

Lynne K
2nd May 2018, 19:39
Hi Pupkin. Sorry for my very late reply. I only just found your message. As a woman it erks me that there has always been a percentage of the medical proffession who treat woman who come before them with undiagnosed symptoms ie back ache as being neurotic. Happily the numbers of doctors thinking like that have declined. However if you have real symptoms that are causing you stress wouldn't it have been more useful for your doctors to find a cause and maybe in the meantime set up talking therapy for you where you can offload about your fears instead of the doctor doling out sweeties (anti-depressants). Ok, this is just my humble, a little feminist own opinion. But keep talking here and elsewhere. It cannot do any harm and it ought be very good for you. Good luck for your June appointment. Lynne

chebs
7th May 2018, 19:33
Hi Tim and Mary,
Sorry to hear about Mary's fall.. I too have problems with my balance so I have to walk with a stick.. lately seem to get out of breath just walking, now have to have regular breaks.. Also seem to have muscle wastage in my face (double chin going:))
I'm still waiting to see my neurologists, recently been given some information that my cousins granddaughter has been diagnosed with SMA Atrophy Type 2, she's only young.. but apprentley its genetic and type 4 is an adult form which can cause MND?? rather interesting..
Will let you know outcome.
Well, take care of each other
love
Chebs and Alan

chebs
22nd May 2018, 19:13
Hi Pupkin,
sorry for the delay in answering you..
Anyone can ask for a second opinion, also, a MRI may assist them in finding reasons for your problems... Don't give up, have a break then go back into battle!! the answers are out there,it just takes time.
take care
Chebs x

chebs
22nd May 2018, 19:26
Hi Terry,
how did it go at the dentist, all sorted now??
I think it won't be long till I have to go!!! causing me some pain, (back Molar) plus not much room for movement!!
Oh well, I'm tired again, this gets annoying need to plan more, at moment suffering with some sort of infection??? temp up, stiffness in my neck and dry eyes, feeling quite poorly tomorrows day 3 so i'm hoping it will leave me soon, if not it will be docs, Ive been given access to my GP any time after her appointments... really helps as no need to book!!
well, take care Terry
Chebs xx

Terry
22nd May 2018, 21:09
Hi Chebs;

I didn't bother with injections because I thought the nerve had been taken out, WRONG again. I have a couple of sensitive teeth but hopefully special tooth paste will lessen them. They do feel a lot better.

Off having an ingrowing toe opp at 9 am tomorrow, I might just stay in bed! LOL.

I've had a couple of viruses this year that really knocked me to say the least, I hope you soon feel better and have loads of energy.

Love Terry

Love Terry

Pupkin55
25th May 2018, 16:35
Hi All, I'm still here I had my diagnosis as functioning neuropathy disorder, but I don't believe it as I'm struggling , not sure what to do really, I don't like to tell my family as I know they want me to believe the diagnosis n it upsets them if I question it. Hope you are all doing good and keeping as well as you can xx

njm
25th May 2018, 19:51
You should be heartily relieved.
What does that diagnosis mean?
A slow, non-life shortening neuropathy?
I would take that.

Charles

Pupkin55
3rd August 2018, 13:53
Hello , I'm still here awaiting a 2nd opinion my doctor is sending me to a different hospital for it.

marge
3rd August 2018, 14:49
Hi Pupkin

This info maybe of some help.
https://patient.info/health/functional-neurological-disorder

Pupkin55
19th October 2018, 17:53
Thankyou , I have read up on this .

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