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21 Oct 2017 at 2:36 pm

#15

Tubby5

Hi is there anyone out there that can give me some advice please. Will have to give you a bit of background first. I am 64 diagnosed 24 years ago and luckily mobile but with MS usual symptoms which are manageable. I hadn’t seen a neurologist for years and years but new doctor thought it would be advisable as I have had trouble, choking, not daily but now and again. Endoscopy was clear. Saw neurologist last week, asked a few questions and dismissed it as not MS related as it was only food causing it and said it was globus, go to ENT. I was very distressed at this having not seen a neurologist or years, didn’t ask what other problems I had and didn’t even give me the name of the MS nurse should I need advice, all the advice I have had in recent years has been of the Internet. What should I do, losing a lot of sleep over this.

Firstly, never, ever use Dr Google. You can convince your self you have ebola by doing that!

2nd phone the hospital and ask the name of the MS nurse. Find out where your local branch of the MS Society is and link up with fellow sufferers, or victims or whatever you want to call us.

3rd - your 64 and it may well be not MS related. Believe me, I’m 60 and got sick of the GP saying “its your age”…thought I might deck him there and then…BUT sadly its true, our bodies start to ail in other ways (tell me about it!). Often MS AGGRAVATES a problem. Like I have painful knees: not MS apparently but because the MS cause muscle weakness, I’m not walking right and that makes it worse!

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This is the reason i do not see a neuro anymore theres just no point because every time i told my neuro that i was having a new MS symptom he told me it was nothing to do with my MS when i knew it was.I used to come away feeling more and more frustrated with them.I used to see a really good one he was old school and had a lot of knowledge i felt that he listened and was on the ball he told me i had moved on to secondary progressive and i had already thought i had and now the new MS specialist…says i have benign MS now … ???

So who is right…that is what i would like to know.I know which one i believe.I do not have any confidence in them at all,I have had to become my OWN expert in MY MS.

I would ask to be referd to a speech and language therapist as they deal with swallowing issues as well.I have had problems with swallowing from the start of my MS,and can only eat little and often and easy to swallow foods too,i can not eat things that take a lot of chewing like steak and i can not have any distractions when i am eating either.BUT according to the new neuro this is not caused by my MS !!!

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well alleluliah it appears you’ve been cured.

PIP assessors told me i was cured.

so let’s party!

carole x

Hiya

I too suffer with choking and swallowing problems and yes you should be referred to speech and language.

My neuro referred me and they have been so helpful. I have both swallowing and speech probs.

With the swallowing she advised me that my larynx wasn’t working well enough and so when I swallow I have to swallow hard to make the food/drink go down. This has helped so much and also with the speech thing I have to take a deep breath in before talking and this seems to be helping too.

You may be given different advice as it depends which part of you is affected by the MS so it is important that you are referred.

I hope you get help soon.

Shazzie xx

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