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Eggy
01-03-11, 10:17
After another wasted visit to my GP today i have lost faith in my GP, I feel it's time to leave the practice and go elsewhere.

After having daily headaches for the past 6-8 weeks and increasing pins and needles in my feet and much more tingling and twitching i again asked today for a referral to a Neurologist but again it was rejected.

Then they turn round and say i have a nasally sounding voice, Nice one! That's going to help with my MND worries isn't it when that's one of the symptoms involved in the Mouth/Throat onset of the disease!

They also seem to think that my tonsils aren't that big which is baffling considering every time i see a different GP at the walk-in centre or when i see different dentists they always comment on how big they are.

Also told my GP about my constant sore throats and persistent tonsil stones that i keep getting but again no help nothing.

Also mentioned the fact that i am getting widespread pain and more stiffness but again nothing.

Think i might get more help from elsewhere! I am really angry today.

sandy40
01-03-11, 10:19
I have no faith in my gp's Eggy so you are not alone..i moved GPs last year as they were usless now im feel my new practise are the same,theres one thats good and listens and doesnt rush you out the door but hes hard to get...no wonder...x

Mogwog
01-03-11, 13:24
Hope you manage to find a GP that understands you Eggy.

Laura.xxxx

shinderuko
01-03-11, 13:33
I'm sorry to hear you've had such a rubbish time with your GP Eggy but maybe a change would be helpful. After the awful way the receptionists at my surgery spoke to me yesterday I've decided to change practitioners once my new lot of tests are over and done with. The new GP I will be moving to is also a drop-in centre which I have been to before so I'm quite confident I will be happy there. It's nearer to my house too which is useful!
Good luck with whatever you decide.

suzy-sue
01-03-11, 18:41
Did your DR say what was causing those symtoms Eggy ? He might have appeared" rubbish "if you were just expecting to be sent to yet another specialist .After all you are still waiting for the results of your MRI SCAN and the appointment at the ENT clinic .They dont send you to specialists just to keep you happy and put your mind at ease .If however he did think you were presenting symptoms of MND he would have reffered you .Wait until you have seen the Gastro about your Scan before you change Drs .You may find it hard to get another Dr if you are awaiting results and possible expensive treatment .A new practice wont want to spend money on a new patient with ongoing problems if they can possibly help it .Most of your problems can be a symptom of anxiety as you well know .Its a shame he didnt offer you any help for your HA .Do I remember correctly that you are awaiting CBT ? T/c sue x

uk23
01-03-11, 19:46
I have had headaches, widespread aches and pain for months now, near constant pins and needles, throat pain, etc.

I have seen a couple of GP's about it, they both say its nothing so I put it down to anxiety.

mtatum4496
01-03-11, 19:50
I understand your frustration. I had to go through a couple of different doctors before I found my own current gem of a GP. Being able to feel as if your doctor really hears what you are saying can make all the difference in the world.

tinycritter
01-03-11, 22:00
I sympathise Eggy, I have no faith in my GP eitherl and I've not had much luck with other doctors at the same practice, I'm going to change as soon as I can. Regardless of whether or not a person has HA it's vital that they have confidence in their doctor, if not then what's the point? Good luck, I hope you find a doc you can trust x

macc noodle
01-03-11, 22:06
One thing that always worries me when I see a doc (and I must say that although I suffer from HA, I am not a typical HA person who visits the doc regularly requiring more tests and seeking reassurance about my symptoms because I also suffer huge anxiety about the docs/hospitals etc) and that is as soon as they scroll down your record on the computer, they automatically assume that every symptom you have is down to anxiety and I have a huge huge fear that one day I will has something really serious and they will dismiss me (and even more worrying is that I will dismiss it too and not seek the help I need)..................... :weep:

scaredstiff695
01-03-11, 22:13
hi
i dont like my gps neither but thats because i hate being told i have anxiety lol
i am however reassured by the fact they dont eve want to send me for tests.
if doctors really believed there was something wrong with you then you would have been reffereed. doctors can get struck off for misdiagnoising, your gp probably does no its nothing bad hun
try to stay relaxed im sure its nothing to worr about,

Eggy
01-03-11, 23:16
Did your DR say what was causing those symtoms Eggy ? He might have appeared" rubbish "if you were just expecting to be sent to yet another specialist .After all you are still waiting for the results of your MRI SCAN and the appointment at the ENT clinic .They dont send you to specialists just to keep you happy and put your mind at ease .If however he did think you were presenting symptoms of MND he would have reffered you .Wait until you have seen the Gastro about your Scan before you change Drs .You may find it hard to get another Dr if you are awaiting results and possible expensive treatment .A new practice wont want to spend money on a new patient with ongoing problems if they can possibly help it .Most of your problems can be a symptom of anxiety as you well know .Its a shame he didnt offer you any help for your HA .Do I remember correctly that you are awaiting CBT ? T/c sue x

I got my MRI results today they were fine, After I have had my B12 injection tomorrow I am walking to the other surgery to register with them. My tonsils are causing me massive problems now, I have had a sore throat for the past 7 weeks and I get pain as well, I have bad neck and ear pain, constant tonsil stones, I woke up gasping last night as I feel like they are obstructing my airway at night and even in the daytime.

I haven't been referred for CBT and the doctor never said what was causing my symptoms.

Eggy
01-03-11, 23:19
One thing that always worries me when I see a doc (and I must say that although I suffer from HA, I am not a typical HA person who visits the doc regularly requiring more tests and seeking reassurance about my symptoms because I also suffer huge anxiety about the docs/hospitals etc) and that is as soon as they scroll down your record on the computer, they automatically assume that every symptom you have is down to anxiety and I have a huge huge fear that one day I will has something really serious and they will dismiss me (and even more worrying is that I will dismiss it too and not seek the help I need)..................... :weep:

I understand that and its one of my worries too, Doctors always seem to blame everything on anxiety

macc noodle
01-03-11, 23:24
I understand that and its one of my worries too, Doctors always seem to blame everything on anxiety

Yep - damn clever this little devil called anxiety isn't it??????

:wacko:

suzy-sue
01-03-11, 23:26
Well thats good news Eggy .What did they say was wrong ? I thought they said they thought it was Chrohns ?..Its important to have a Dr you can talk to .I hope you have better luck nexttime .Please ask him / for some CBT for your health anxiety .Im suprised the other Dr didnt refer you .Its obvious you are extremely anxious about your health .I always think its important for a Dr to take some time to explain things and why you feel the way you do .But sadly time is a Factor, and a bad bedside manner doesnt help either .When is your E.N.T Appointment I forget ? Best of luck with it ..Sue x

Eggy
01-03-11, 23:31
Well thats good news Eggy .What did they say was wrong ? I thought they said they thought it was Chrohns ?..Its important to have a Dr you can talk to .I hope you have better luck nexttime .Please ask him / for some CBT for your health anxiety .Im suprised the other Dr didnt refer you .Its obvious you are extremely anxious about your health .I always think its important for a Dr to take some time to explain things and why you feel the way you do .But sadly time is a Factor, and a bad bedside manner doesnt help either .When is your E.N.T Appointment I forget ? Best of luck with it ..Sue x

ENT appointment is Friday morning and it cant come quick enough, I am just worried about being fobbed off again, I hope they say they will remove my tonsils.

I wont know what is wrong with my stomach until I see the Gastro again April hopefully its just irritable bowel syndrome but I have been having problems with my stools again lately.

nomorepanic
02-03-11, 00:20
So it isn't Crohn's then ?

I don't think they will remove your tonsils unless they really have to Eggy - think of the risks of the op at your age?

Have you looked into this moving docs? You can't just walk in and sign up - I am sure paperwork and transfers need doing.

Eggy
02-03-11, 00:39
So it isn't Crohn's then ?

I don't think they will remove your tonsils unless they really have to Eggy - think of the risks of the op at your age?

Have you looked into this moving docs? You can't just walk in and sign up - I am sure paperwork and transfers need doing.

Well my doctor didnt say I haven't got crohns but I presume I haven't got it, My doctor did tell me to mention sleep apnea to the ENT because I snore very loudly and sleep with my mouth open and apparently that's a classic symptom so if I have it then they will have no choice but to remove them.

I know the risks and its worth the risk I am prepared to go through with it.

I have found a new GP Surgery that I can register with, I walked in and signed up with my current GP.

suzy-sue
02-03-11, 19:02
How do you know you snore if you live on your own ? Or is there something you havnt told us :winks::blush:Not everyone that snores has sleep apnea..My hubby snores like a wilderbeast at times ,does that mean he has sleep apnea too ? :shrug: When the Dr told you your results were back for the MRI what did he say exactly ? sue x

Eggy
02-03-11, 21:40
How do you know you snore if you live on your own ? Or is there something you havnt told us :winks::blush:Not everyone that snores has sleep apnea..My hubby snores like a wilderbeast at times ,does that mean he has sleep apnea too ? :shrug: When the Dr told you your results were back for the MRI what did he say exactly ? sue x

My parents came over at the weekend and i asked them to come up and watch me sleeping for a while and they said i was snoring very loud and my mouth was wide open as well.

My Doctor just said that there was no Inflammation shown on the Bowel but to discuss it more with the Gastro in April when i see him again.

ladybird64
02-03-11, 21:46
You will need a sleep study to confirm the diagnosis of Apnoea, it isn't a case of whether you snore or not!

Seeing as you now have a new GP maybe he can refer you for a study.

You are misguided when you insist ENT HAVE to remove your tonsils..they don't.

Eggy
02-03-11, 22:10
You will need a sleep study to confirm the diagnosis of Apnoea, it isn't a case of whether you snore or not!

Seeing as you now have a new GP maybe he can refer you for a study.

You are misguided when you insist ENT HAVE to remove your tonsils..they don't.

My GP (Previous GP) has suspected Sleep Apnea but wanted me to get someone to watch me so i did what they asked me to do.

IF and only if i did happen to have it then the Tonsils would be the cause because with them being constantly enlarged they can obstruct you're airway so in a nutshell the ENT would have to remove them for my health and safety seeming though Sleep Apnea can be deadly if left untreated.

ladybird64
02-03-11, 22:16
Eggy, with the greatest respect, please don't try and quote facts to me on Apnoea which I know are not true.

You may well have enlarged tonsils but if your ENT does not agree that there is a problem they will not take them out..health and safety does not come into it.

If they think tonsils are a cause for the as yet undiagnosed apnoea they will remove them, if not, and if you have a proper diagnosis of apnoea you will be treated at home with a CPAP machine.

You cannot get an offical diagnosis without a sleep study so you need to ask for a referral for that before you can move forward.

Eggy
02-03-11, 22:20
Eggy, with the greatest respect, please don't try and quote facts to me on Apnoea which I know are not true.

You may well have enlarged tonsils but if your ENT does not agree that there is a problem they will not take them out..health and safety does not come into it.

If they think tonsils are a cause for the as yet undiagnosed apnoea they will remove them, if not, and if you have a proper diagnosis of apnoea you will be treated at home with a CPAP machine.

You cannot get an offical diagnosis without a sleep study so you need to ask for a referral for that before you can move forward.

My Doctor even said to me not long ago that if my tonsils are the cause i won't need a CPAP machine because as soon as the tonsils are removed the Apnea will stop and they told me to talk to my ENT about the Apnea as well.

People who have Sleep Apnea that isn't caused by enlarged tonsils are treated with a CPAP machine and this comes from my own doctor.

ladybird64
02-03-11, 22:22
Which is what I just said to you above. :shrug:

You are putting the cart before the horse though..you need the diagnosis of Apnoea first and the possible tonsillectomy after that.

It doesn't work the other way around!

nomorepanic
02-03-11, 22:28
Eggy - your doc sounds ok to me - he is suggesting the correct things, sending you for tests etc yet you want to ditch him cos he is useless :shrug:

diane07
02-03-11, 22:39
Sleep apnoea is when you have trouble breathing in your sleep, so how do know you are having trouble breathing??

I know quite a few people who have this badly and had to be tested in hospital for many weeks.

blueangel
03-03-11, 09:25
My ex-husband has sleep apnoea, and he falls into the "very severe" category. When they did a sleep study on him he stopped breathing an average of 30 times an hour! As his was so severe they called him back after two days and issued him with a CPAP machine immediately.

However, nobody has suggested removing his tonsils - usually sleep apnoea is connected with the tissues of the throat becoming floppy and less responsive during sleep, which is what interferes with breathing. However, as we are programmed to keep breathing (good job really!), the brain overrides the pause in breathing and makes us start again. The classic symptoms are snoring (which can be really severe) and pauses of up to a minute without breathing, and then gasping for breath. I know the sound of this really well as I heard it every night for years.

Don't wish yourself into having your tonsils out, Eggy - it can be a pretty unpleasant procedure for adults.

Eggy
03-03-11, 12:44
Well..........................I had a phone call this morning around 8.45am asking if i wanted to go in today instead of tomorrow due to a cancellation so i said ok.

I got an appointment at 11.15am and was only in there 10-15 minutes and i have just got back.

I am having a Tonsillectomy done soon, I got what i wanted, He advised me to have one before i even said anything because he felt that i have Tonsillitis too much and he said that they could be obstructing my airway and that was before i mentioned Sleep Apnea but i mentioned it to him and he agreed that they could be causing some problems in that regard.

But as i keep getting throat pain and sore throats and ear pain as well and they fact that he said they were an impressive size along with the persistent Tonsillitis i keep getting he recommended that they come out and i agreed and i said that i think they are the cause of my problems and he said i agree with you and i said i was gonna ask you to remove them anyway!

Eggy
03-03-11, 13:07
And again it proves my GP is useless for saying my Tonsils are an average size, The ENT'S words were "They are an impressive size".

nomorepanic
03-03-11, 13:36
And again it proves my GP is useless for saying my Tonsils are an average size, The ENT'S words were "They are an impressive size".

Doesn't it more specifically say that in your opinion then the previous ENT specialist was useless?

How can you now trust this one - who is right and who is wrong?

Eggy
03-03-11, 14:01
This ENT seemed more senior than the last one and straight to the point no messing around, He also had 3 medical students in with him who had a look as well and they all agreed that they needed to be removed.

And yes i was skeptical of the last ENT's diagnosis and rightly so, After being on Lansoprazole for 2 months it didn't help in the slightest and never helped with the pain either, I have had problems with my Tonsils for 3-4 years now and i'm happy to finally say goodbye to them as they have made my life unpleasant for along time and i will be so glad when they aren't in there anymore.

Not looking forward to the operation but it will be worth it and i am prepared to go through with it as i believe it will benefit me in the long term.

PoppyC
03-03-11, 14:26
My brothers wife was concerned about his breathing during sleep, and eventually he was properly monitored in hospital whilst sleeping, whilst tests were run on him. This is in the USA, and I think he has to now use some breathing type apparatus whilst he sleeps (I think)
How can anyone say you have sleep apnea, if you have not been properly monitored, Eggy?
One thing is certain, at least you get in to see your gps and consultants. I have to wait ages before getting an appointment to be seen by my gp!

Eggy
03-03-11, 14:34
My brothers wife was concerned about his breathing during sleep, and eventually he was properly monitored in hospital whilst sleeping, whilst tests were run on him. This is in the USA, and I think he has to now use some breathing type apparatus whilst he sleeps (I think)
How can anyone say you have sleep apnea, if you have not been properly monitored, Eggy?
One thing is certain, at least you get in to see your gps and consultants. I have to wait ages before getting an appointment to be seen by my gp!

No one has said i have Sleep Apnea it is suspected by me, My GP, 2 Senior Dentists and even the ENT said there's a possibility because my Tonsils are so large that they could be obstructing my airway.

But i knew my Tonsils needed to go and i was right i didn't need to say anything to the ENT he recommended it before i went on to talk about all the problems they are causing.

nomorepanic
03-03-11, 15:36
Well goodbye tonsils :D

I am now wondering what ailment is going to come up next though :wacko:

Katie6
03-03-11, 16:17
I had my tonsils out, and it was a very good descision for me, i had many bouts of tonsilitus, and they always hurt, even when they were not infected, they were large, so large that they did actually touch one another. Since having them out, i have had very few sore throats, and they are always short lived and never severe so for me it was a great descision.
After the proceedure it hurt like hell, but i still say was definately worth it, in the long run. so good luck with the op, and i hope you benefit from it as much as i have.

Have they said how long you are likely to wait before the operation will take place?

Eggy
03-03-11, 17:04
Thanks.

Sounds the same as me, Mine hurt all the time whether they are infected or not and when the are infected it's even worse and now i am getting more and more tonsil stones in them aswell so i think it will be a good decision for me too in the long term, Mine aren't as large as your's were but they are still constantly enlarged and don't ever go down.

They haven't given me a timeframe, They just said they will contact me a week before so that i can go in to be assessed before the operation.

Clairalou
03-03-11, 18:00
Hey Eggy great news on getting the agreement to have your tonsills out.

Would just like to let you know that if you are overweight even slightly when you go for your pre op check they might prospone the tonsillectomy until you are at the correct BMI due to the dangers of the general anesthetic!

claire xx

Eggy
03-03-11, 18:06
I'm not near my BMI but that nothing was mentioned by the ENT about that, I have had General Anesthetic a few times before when not near my BMI so hopefully it shouldn't a problem, I am not massively overweight only slightly so i think it will be ok.

Think mine is 28.5.

Clairalou
03-03-11, 18:21
I just know that our hospital trust were posponing non urgent elective surgery until patients were at a desirable BMI! It wouldn't be the ENT it will be the anethatist at the hospital that decides!

You might find yours don't have the same policy as ours! I just know that they won't take any risks these days!

Claire xx

Eggy
03-03-11, 18:26
If i was really fat i could understand it but i'm not so hopefully my Hospital will be ok with it.

daisycake
03-03-11, 18:40
Hey Eggy great news on getting the agreement to have your tonsills out.

Would just like to let you know that if you are overweight even slightly when you go for your pre op check they might prospone the tonsillectomy until you are at the correct BMI due to the dangers of the general anesthetic!

claire xx

I have been wondering that too, I'm away to discuss non urgent surgery with consultant next week and I reckon she'll tell me they won't do it til I'm a good weight. I'm size sixteen/eighteen at the moment so... But then my Gp said the trick is to keep walking, eat only what you need (no snacks) and not to get overly obsessed... Takes forever though - it took me a year when I was 15 to lose a stone and then I put it all back on :(

suzy-sue
03-03-11, 18:44
[QUOTE=Eggy;

I am having a Tonsillectomy done soon, I got what i wanted, He advised me to have one before i even said anything because he felt that i have Tonsillitis too much and he said that they could be obstructing my airway and that was before i mentioned Sleep Apnea but i mentioned it to him and he agreed that they could be causing some problems in that regard.

But as i keep getting throat pain and sore throats and ear pain as well and they fact that he said they were an impressive size along with the persistent Tonsillitis i keep getting he recommended that they come out and i agreed and i said that i think they are the cause of my problems and he said i agree with you and i said i was gonna ask you to remove them anyway![/QUOTE]


I hope it stops the symptoms Eggy .Does this mean you no longer think these symptoms are Early signs of M.N.D? Sue .x

Eggy
03-03-11, 19:07
I hope it stops the symptoms Eggy .Does this mean you no longer think these symptoms are Early signs of M.N.D? Sue .x

We will have to see if i'm still having problems when they are gone, If the problems go away i'll know that the tonsils were definitely the problem so i'm hoping that will be the case.

KK77
03-03-11, 19:18
What's tonsils got to do with MND? Are you saying that you suspect your tonsils were causing all your facial pain, swallowing problems etc?

What about all your other bodily symptoms Eggy? Surely your tonsils weren't causing all these problems too?

I'm somewhat bemused.

Eggy
03-03-11, 21:00
What's tonsils got to do with MND? Are you saying that you suspect your tonsils were causing all your facial pain, swallowing problems etc?

What about all your other bodily symptoms Eggy? Surely your tonsils weren't causing all these problems too?

I'm somewhat bemused.

NO, I said a while back that something was causing my problems swallowing and it's either my tonsils or something else that's why i said i'll know once they are removed if i'm still having problems swallowing when they are removed then i'll be fearing the worst!

Why would i think my tonsils were causing my facial pain and other bodily symptoms? you're post baffled me, The only thing my tonsils could be responsible for is my sore throats/throat pain and difficulty swallowing nothing else, You must have got lost somewhere, Sue was saying that now i am getting my tonsils removed do i no longer think that my symptoms were down to MND and i said we will have to wait and see what happens once i have the tonsils removed.

The other problems need addressing aswell i'll leave that down to my new GP.

KK77
03-03-11, 21:15
Well I'm not an ENT specialist, but you had a cluster of facial/neck problems that to me were more consistent with TMJ (compounded by anxiety).

I assume your tonsils didn't grow overnight lol, so why haven't you experienced these problems before? Or have you?

I'm not saying whether your tonsils should/shouldn't be removed but I'm just very sceptical that they're causing all these issues - apart from difficulty swallowing and potential sleep apnea.

nomorepanic
03-03-11, 21:30
I don't think the swallowing problem will go away once the tonsils are removed to be honest as I am pretty sure that is down to anxiety.

How come the ENT guy didn't look down your throat Eggy to do a thorough job of things this time?

Eggy
03-03-11, 21:35
Well I'm not an ENT specialist, but you had a cluster of facial/neck problems that to me were more consistent with TMJ (compounded by anxiety).

I assume your tonsils didn't grow overnight lol, so why haven't you experienced these problems before? Or have you?

I'm not saying whether your tonsils should/shouldn't be removed but I'm just very sceptical that they're causing all these issues - apart from difficulty swallowing and potential sleep apnea.

I remember having some problems in 2008/2009, I first noticed my enlarged tonsils in February 2008, I had some problems with sore throats and other throat problems but they went away and came back in September'2010 only this time i got difficulty swallowing and throat pain as well and it hasn't gone away.

I've got no idea about the facial pain, my dentist says i might suffer from bruxism because i have some wear on my teeth but not substantial wear so maybe that's the cause of the facial pain

Eggy
03-03-11, 21:37
I don't think the swallowing problem will go away once the tonsils are removed to be honest as I am pretty sure that is down to anxiety.

How come the ENT guy didn't look down your throat Eggy to do a thorough job of things this time?

Well there can only be a few explanations for the difficulty swallowing:-

1.Tonils
2.Anxiety
3.MND/Other Neurological Problem.

About the ENT specialist, He probably didn't want to repeat it seeing as it had already been done 3 months ago and seeing as the other ENT's diagnose of Reflux appears to be wrong or even if i have Reflux that isn't the cause of my sore throats/throat pain/difficulty swallowing.

nomorepanic
03-03-11, 21:41
I just think that in a few weeks/months time after the tonsils are out and you still have problems you will start thinking the worst again and you will be no further forward.

Let's hope not but I think you will.

Eggy
03-03-11, 21:56
I just think that in a few weeks/months time after the tonsils are out and you still have problems you will start thinking the worst again and you will be no further forward.

Let's hope not but I think you will.

That depends if the tonsils are the problem, They are definitely the cause of the sore throats and throat pain and the ENT agreed that the regular tonsil stones don't help either and can cause more sore throats and pain.

It depends whether the difficulty swallowing remains after, I would love nothing more than for it to end once they are removed.

I just dread and hate the though of something like MND, I have always said that if i ever got anything like that i would end it because there's no way i would ever go through anything like that and even my parents know that i wouldn't go through something like that, I wouldn't let myself become slowly paralysed until i couldn't move, eat, walk or talk.

nomorepanic
03-03-11, 22:00
Well you thought you had MND back in September last year wasn't it?

We are now 6 months down the line and you are no worse.

Eggy
03-03-11, 22:03
Well you thought you had MND back in September last year wasn't it?

We are now 6 months down the line and you are no worse.

Yes it was September, I have no idea how quickly it progresses sometimes slowly sometimes rapidly i think after all some people live 5-10 years with it or more (Stephen Hawking) springs to mind but most people seem to die in 2-5 years, 6 month-3 years if it's the form that starts in the mouth/throat.

If nothing has changed in the next 6-9 months i will know that it's not that for definite.

PoppyC
03-03-11, 22:06
Eggy

I heard of someone I know, Dad, having been diagnosed with bone cancer, at a young age, tonight.
Why not start worrying about something when it actually happens? when you have been diagnosed? Why worry about MND until you have been diagnosed? until then, try and enjoy life, whilst you have it.
I have anxiety and can worry about everything, but I do actually have anxiety. You obviously have health anxiety, so maybe that explains why you are as you are, in which case I suppose I can understand...

nomorepanic
03-03-11, 22:08
Poppy - cos Eggy googled it and decided he had it!

Eggy
03-03-11, 22:11
Eggy
Why would you think you had MND?

Not sure really probably because of the throat problems, It was this that grabbed my attention in September courtesy of Dr Google:-

"Progressive bulbar palsy (A form of MND) is slow in onset, with symptoms starting in most patients around 50-70 years of age (Merck 2005) although it can start in people much younger and even people over the age of 70. It is debated as to whether PBP is a separate entity or a subtype of amyotrophic lateral sclerosis (ALS). Pure PBP without any EMG or clinical evidence of abnormalities in the legs or arms is possible, albeit extremely rare. Patients with PBP eventually develop the widespread symptoms common of ALS/MND (Swash 2000)."

"Prognosis for PBP patients is poor. Progressive bulbar palsy symptoms can include progressive difficulty with chewing, talking, and swallowing (Merck 2005). Patients can also exhibit reduced gag reflexes, weak palatal movements, fasciculations, and weak movement of the facial muscles and tongue. In advanced cases of PBP, the patient may be unable to protrude their tongue or manipulate food in their mouth (Campbell 2005).
Patients with early cases of PBP have difficulty with pronunciations, particularly lateral consonants (linguals) and velars, and may show problems with drooling saliva. If the corticobulbar tract is affected a pseudobulbar affect with emotional changes may occur (Merck 2005). Because PBP patients have such difficulty swallowing, food and saliva can be inhaled into the lungs. This can cause gagging and choking, and it increases the risk of pneumonia (Merck 2005). Death, which is often from pneumonia, usually occurs 1 to 3 years after the start of the disorder"

Eggy
03-03-11, 22:23
And i found this:-

Difficulty swallowing (dysphagia)

Dysphagia is a medical condition in which an individual has difficulty or discomfort in swallowing. Stroke victims and the elderly are more likely to experience dysphagia. Individuals with the following conditions are also more likely to suffer from dysphagia.

Motor Neurone Disease
Multiple sclerosis
Parkinson's disease
Alzheimer's disease
Head and neck injuries
Cancer of the mouth or throat
Infection or obstruction in the mouth or throat

Swallowing involves 25 muscles and four nerves, and the problem can occur in any stage of the swallowing process. If the difficulty is caused by enlarged tonsils or adenoids, then surgery to remove them may help resolve the problem.
Symptoms of dysphagia include:

Swallowing repeatedly (I get this)
Coughing frequently
Frequent throat-clearing (I get this)
Unusually husky voice
Eating more slowly because it makes swallowing easier

It is important to seek medical attention if you or your loved one experiences difficulty or discomfort in swallowing. Dysphagia can have serious physical side effects, including malnutrition, dehydration, pneumonia and compromised immune function.

Greenman50
03-03-11, 22:33
Hi Eggy

I mean this in a nice way mate , i,m not haveing a go , please please don,t take it the wrong way ....

IMHO its Dr Google that has caused your anxiety about mnd . I did the same with my symtyms and i could match them to most things i googled .
Last year i had throat / oesopagus / lung / bollock cancer and finally lymphoma , all curtosy of Dr google . I can match alot of my symtyms to the text you just pasted (i just read through it quickly so it didn,t mash my head ). I like you had guinuine problems , but then anxiety kicked in causeing swallowing problems , acheing neck , ibs , pins and needles , chest pain etc etc etc .. Then i read to much into them .

I just tell my symptyms to go away in short jerky movements , or ignore them , i,ve had FBC and trust my Doctor and i,m now believeing i am beating this anxiety .

Good luck Eggy

Greenman50
03-03-11, 22:42
I also get the frequent swallowing and throat clearing . Thats because i focus on it , as i thought i had throat cancer 5 months ago . The more i swallow , the harder it becomes , the throat clearing is either acid or the body over produceing mucous . I,m doing it now after reading your post and could feel it all day tommorow if i thought about , but i,m haveing one more beer and forgeting about it .
I,ve been fine with it all day today , because i,ve been to busy to think about it .

Horse
03-03-11, 22:42
"Whatever you think, is the person you become."

Horse.

helz_belz
28-03-11, 11:40
just a quick question, but have you had your vitamin b6 levels checked? I've been having problems with pins and needles, trembling, muscle weakness, aches and pains, twitching, trouble walking and even trouble swallowing. i figured out that i was getting a toxic reaction from b6 in my multivitamin, so stopped it. the walking problem cleared up in about 5 days. am currently going through detox, and all the research indicates that b6 problems are fully recoverable over time. i still have a lot of the symptoms, but as the detox and recovery take a lot of time, i'm doing my best to just carry on. unfortunately doctors dont seem to understand about b6 toxicity, i had to figure this all out myself (got fed up with GPs too, they just kept checking my thyroid over and over). I have Generalised Anxiety Disorder, but the problems the b6 caused felt different somehow...

paula lynne
28-03-11, 12:11
I had a PM last week, Eggy has decided to leave the forum so wont see these messages guys.

nomorepanic
28-03-11, 19:05
Yeah he has moved on again now.

Greenman50
28-03-11, 19:12
I hope he has moved on as in he is feeling better but i have a feeling he will be back .
Just read my post and relised i don,t clear my throat anymore or get excess mucous , i,d forgotten all about it !

blue moon
29-03-11, 00:16
Poor eggy,i do hope he finds peace within himself.
Petra