Sorry to be back

[Flashster]

Hi All,

Very sorry to come back here again. I've tried my best not to. I realise much of this may seem petty to what many here are going through.

I posted here some weeks ago about progressive dysphagia which started in May 2011. It started with solids and now I'm on with thin liquids only.

I am now seeing a new neurologist who is currently doing some blood tests (a load for MG, Lupus etc etc); I also have a ct scan of neck and chest due and another EMG (this time a repetitive single fibre one which apparently I did't have last time). He did do a quick physical exam (didn't spend much time looking at my mouth).

I asked about motor neurone and he asnwer wasn't clear, but seemed to imply that it would be obvious by now if things started in May last year.

Symptoms seem to progress monthly and its the last few that concern me (as if I wasn't already majorily concerned!).

- I've noticed 'ditches' apearing in the tongue towards the centre;
- My tongue never feels at rest and I've feel twitches in all areas of it continually;
- In the last few days I've noticed a increase in saliva production and pooling of it in my throat which I cannot seem to clear and makes me feel like I'm choking.

My first EMG was about 1.5 months ago (I'm confused as to which sort of EMG it was), and was clear apart from some benine fasiculations in my left leg and foot.

I guess my message is to appeal to anyones experience in this area as to what the heck I can do and what it might be?

 

[Kathylund]

You could ask your doc for a modified barium swallow which could show problems with your swallowing, I had one done and it's a pretty quick test, good luck, kathy

 

[Flashster]

I had that much several months ago. As I refused solids (I know, bad move) they said it showed no issues with liquids. If I had another one they'd definately see pooling in my throat of liquids, but I don't supposed I will.

 

[Alyoop]

You need another swallow test. They should give you another chance. The only way they will be able to tell if it's inorganic or not, is to see what's actually happening in your throat as you swallow.

 

[Flashster]

Just had a letter from the neurologist (who I don't think looked at the tongue for more than a second or so). He said he is investigating me for the following:

Neuromuscular junction disorder;
Primary muscle disease;
Structural disorders of the oropharynx.

As mentioned, he is doing a repetitive single fibre emg, nerve conduction study, ct scan of neck and chest, and is in the progress of a load of blood tests.

I've had:
MRi of head and neck;
Modified barium swallow when I refused solids;
Scope down nose by ent;

On his radar seems to be MG, oropharangeal dystrpophy, cancer(?) (I've assumed the former and latter based on the blood tests and what the radialolgist told me).
He doesn't mention any form of motor neurone that I recognise - would that be under one of those headings?

When I asked him about motor neurone at the examination, he dismissed it as 'already been looked at by others'.

If I understand correctly, he seems to suggest that oropharangeal dystrpophy would be rare possibility but can present this way, and that if all tests come back negative, there are a few things they do not have names for that would not be a bad thing to have (i.e. they go away).

He seems to have assumed I have a swallowing issue and moved on - he doesn't mention getting another swallowing study done. I wonder if the amout of radiation is an issue there (ctscan + xray of chest + modifed barium within 3 months).

 

[Flashster]

All my neurologists blood tests came back. All were normal (except a vitamin D level of 100!), except the voltage gated potassium antibody, which was at 122 (normal range is 0-100).

They want to do another EMG & Nerve Conduction Study.

Not quite sure that this means, but something called Isaacs Syndrome has been mentioned.

 

[kmendsley]

First, the radiation in all of these things is not that much anymore for the tests...believe me. I have had 25+ different tests that have radiation in the past year...asked about it every couple of times and they said there was no problem with that any more.

Vitmin D and Potassium specifically can mess up your muscles big time....even in your throat. This could really be causing all your symptoms...get those in check Immediately.

Neuros run a bunch of tests...they have to rule out everything. If you sit there and look at each one individually that they are running on you, you are going to scare yourself silly. Just let them run the tests, don't look them up unless something come from them. If you follow every lead and wonder if you have it...you will make yourself crazy.

You need that swallow test again. Demand it. Take the solids. You couldn't be in a safer place when they do the test so if you do choke they are able to figure out what is going wrong with your throat, and they will save you of course. If you are there for a swallow test they already assume there might be some choking going on...go past your comfort zone and do what is asked of you.

Don't know why you are getting another EMG since the other one was normal but take it anyway so you can be doubly sure you are fine there.

Good luck to you.

 

[notgivnup]

Flashster, Sounds like the docs are doing their job with getting more tests. Try to be patient they will get to the bottom of it. It may take awhile. Hang in there.

 

[trfogey]

Not quite sure that this means, but something called Isaacs Syndrome has been mentioned.

You didn't G o o g l e Isaac's Syndrome already? That would be a step of progress.

 

[Flashster]

Hi All,

I did the EMG and it was a lot more thorough than the last one - took two hours.
He held the needle in for around two minutes in many areas, and even did the electrocution test on my face, which was rather weird.

Apart from my jaw muscle, I think he did the SFEMG just about everywhere.

He said he saw no obvious signs of MND (as before), but wanted to look a little closer at Isaacs and Pompeii disease.

No I haven't g o o g l e d them! (actually I did with Isaacs, but information is scarce and some conflicting).

The Neuro seems to think Isaacs isn't a bad thing to end up with (if there is such a thing).

Interesting you should mention Vitamin D. This all started when I took 1000IU vitamin D tablets at the request of my Doctor.

The Voltage Gated Potassium anti-body is present when your immune systems is attacking areas of nerves I think. As I say, my levels were above normal (122, normal range 0-100), but not too high. I gather the symptoms are fasciulations and muscles which don't easily untighten. It can affect the throat also I think.

I hear the advice about the swallowing test. I can honestly say that there is absolutely no chance I could swallow solids. I'm not sure if immediately choking will show them anything?

The Neurophysiologist did ask if I was seeing a Gastroenterologist to have a good look at my throat. At the moment, the neuro seems to think he's onto something and has said that I need the planned endoscopy, but there's no immediate hurry at the moment.

I think he may be looking at further tests to isolate Isaacs, but will know more nest week.

Thank you everyone. Does anyone know if Rose is ok by the way?

 

[Flashster]

I forgot to say that he did find fasciulations (in at least my legs) but didn't seem very concerned about them. He did say I was the third person that day with them.

As I've said I do now have them in my tongue, but not sure if that showed up.

 

[kmendsley]

Rose? She was on yesterday.

 

[Ms. Pie]

Rose has just been busy with her life. All is well!

 

[Flashster]

Thanks. As long as she's ok. Was just checking.