Back for the thrid time with virtually no swallowing

[Flashster]

Hi All,
I posted some time ago about my swallowing issues.
I have been liquids for 2 years. Recently I had to go to thin liquids, and the past few days I am aspirating.

I've had 5 EMG's & NCS's, CT scan of head, oesophageal manometry, Nerve hyperexcitability test.

The diagnosis has so far (all over the last 12 months) been:
Voltage Gated Potassium Anti-bodies positive
Possible Elhers Danlos Syndrome
Cramp fasiculation syndrome
Pharyngeal Dysphagia

A oesophageal manomtery revealed that my oesophagus had regular failed perystalsis, but that the upper and lower sphincter were relaxing ok. This led them to believe that my oesophageal issues at least were down to Elher Danlos, but that still leave the rather serious (now that I am aspirating the few fluids I live on) pharyngeal issues.

The Elhers Danlos specialist admits that although they may be some with upper throat issues, he has not come across any like me.

Equally, those with voltage gate potassium anti-bodies and CFS (or even Isaacs) have not come across anyone with swallowing problems as bad as me.

The neuro says my nerves are fine and that I don't need to be tested again for motor neurone disease as I should be a lot worse (this was before I started aspirating).

I've had a head scan about 12 months ago to rule out MS.

Yet it seems to my uneducated eye, that only ALS and MS folk have swallowing issues as severe (or more so) than mine.

I asked the neuro if you can test the nerves from the throat to the brain, and he said "yes but I don't need to because your voice is ok".


My questions are:

Could they have missed something?
Any ideas on where to go from here?
Anything that may help me?

I'm in a real mess now that I can't even drink, so any suggestions most gratefully received.

 

[ottawa girl]

So sorry you are still left feeling adrift.

It's my understanding that thin liquids are the choking hazards for PALS; in fact, thickeners are recommended. Since you can handle thin liquids, I believe, this points away from ALS. Also, clear speech is inconsistent with bulbar ALS.

My other thought is that since you've had issues for the last 2 years, if it is ALS, you would, by now, surely be having other obvious symptoms, not only swallowing problems.

I do hope you can get the diagnosis and solution you need ASAP.
Don't give up, the answer is surely out there!

 

[Flashster]

Thanks. I have fasiculations and cramps also (everywhere including the tongue), but they've put this down to benign cramp fasciculation syndrome. I feel some weakness in my hands and right leg, but this was not significant during any examination.

I feel tight/loose (sorry hard to describe) muscles around my neck/throat, which feels very obvious to me.

The last few EMG's were quite brief as they seemed to disbelieve it could be a motor neuron issue at my age (early 40's). They've never done a bulbar one (at least I don't think so)

I've literally looked everywhere for someone with my issues.

 

[ottawa girl]

Oh my. I just read your previous threads. I should have done that before replying to you today.

Our beloved, TrFogey said it best back in December, 2011


" Trust me -- you won't feel better after your EMG tomorrow, regardless of the results. You'll still have swallowing difficulties and you'll still be obstinately believing that you have bulbar ALS. This post is simply preparing the ground for your next argument, which we've heard here a thousand times before -- the EMG wasn't done correctly/at the right time/in the right place.

Why is that? Because you've convinced yourself that you have bulbar ALS and you are now looking for any reason to keep believing it in spite of any medical evidence to to the contrary -- of which there is plenty, but you refuse to see it or even consider it.

So I'm calling bullshyte on that argument today. Don't bother to bring it here. We've answered that question hundreds of times here. Come up with something new and original, like a story of how UMN symptoms affect your daily life, before you try to tell us that you are the exception whose ALS didn't show up on the EMG."


Have you had a psychiatric assessment? It's imperative you rule out everything.


Good luck,

 

[Flashster]

HI Elaine,

Its not psychological. I'm not trying to convince myself I have ALS. The neuro actually told me that 99.99% of people with my symptoms do actually have ALS, but, presumably because my nerves haven't shown up as abnormal in the EMG's he said he believes I have two conditions.

The tests show that I have no peristalsis in my gullet.

Neither condition explains why my swallowing is just about non existent and has been getting that way for 2 years. I now choke on my own saliva.

I got some good advice from TrFogey, but he was wrong there. I hope others reading this believe that as I could really do with some advice.

 

[vickim]

It seems to me you have a diagnosis. As for solutions to your problems with swallowing maybe a feeding tube. I would listen to your drs as they seem to be on top of things. I don't think there is much we can help with other than moral support. Only time will tell how things progress but it sounds like you have enough to contend with. I wish you peace.

 

[jpsteeler99]

It really drives me crazy reading these hypochondriac posts. For God's sake, you are not sick. Move on!

 

[Uptown]

Curious but have you had any injury to your neck, chest or abdomin? Your symptoms point to vagus nerve issues. By chance ever have a Fundoplication? Any chronic cervical spine issues could affect cranial nerves including swallow issues and gastropareses. Not that it really matters what it is called since regardless of the label you still have to manage the symptoms. If you can't swallow or digest then you need a nutrition input strategy. Manage the symptoms and comfort comes with that.

 

[kiara]

Hi, I read that probably you have Ehler danlos syndrome. I know that this syndrome in some patients causes severe problems of impaired swallowing and gastroparesis, some people with Ehler danlos have to be fed by G-tube or by intravenous cath for the whole life. Ehler Danlos is a very complicated syndrome so maybe you can see a specialist in connettive tissute disorders and ask him if all your symptoms are in some way related to this syndrome.

 

[Flashster]

Re: Back for the third time with virtually no swallowing

I hope the doctors are. No one seems to have explained why I cannot swallow.

I asked my family doctor about a tube yesterday but, despite me sitting there spitting into a bottle, he said "that would be a last resort".

I've not said it to them, but I did feel new fasciculation's on the back (i.e. down the throat) of the tongue in the week leading up to this latest worsening. As they have been putting these down to the benign CFS I haven't mentioned it.

I know, due to comments here, that some think I am trying to fit this into ALS - I probably was initially, but not now. I really cannot swallow, not even my own saliva now, and have been having major and increasing issues for 2 years (on liquids only during throughout this).

The good thing is I can still talk, between wretching up my saliva.

 

[ottawa girl]

You must surely be extremely thin if you have been unable to swallow properly for two years.

Didn't your doctor notice that?

 

[Flashster]

Unfortunately I am a skinny guy anyway, but yes I am quite underweight. The past year I added a load of olive oil to anything I managed to swallow to keep my weight up.

The weight will drop off now, if I manage to keep myself hydrated.

I really get the impression that they don't realise how bad it is. I get a lot of "we'll see how things go", which make me feel like I've no hope if it gets worse, which it has.

 

[vickim]

Have you had a swallow study done? You may need to drink the supplement drinks like ensure or boost to keep your calories and nutrition up.

 

[Flashster]

I had it done way back (20 months ago or more) when things started and they saw nothing (it was done with liquids only as that's all I could swallow). That's when some doubt about my being genuine came in I think. Some months later a separate hospital did an oesophageal manometry test and found that I had no peristalsis in my gullet. Although this test did not look at the pharyngeal area, it at least showed some that I had major problems.

However, that feeling of something positive coming out of the tests was short lived as it just got worse and worse.

 

[olly]

Hi flashster,so sorry your having such a hard time and getting the run around with the doc's.
I feel its not mnd,after 2yrs with bulbar problems you would have some speech problems also as well as positive emg's on limbs.
Sounds like something specific effecting your swallowing, you should really get the swallowing study done again.
I do feel that even though we are blessed with the nhs,our treatment is soley upto the doctors......we can't ask for a test and get it like a private patient.
You need to be more proactive,put your foot down and tell them you have had enough,you can't carry on like this......they wont like you making noise but who cares lol.