Testing for Difficulty Swallowing

[AndrewB]

Hi all,

I recently posted that ive been having extreme difficulty swallowing and mobility problems with my tongue (my tongue also sometimes tingles, like nerves are moving kind of feeling, hard to explain) all of which started during treatment for a chest infection. (antibiotics).
When it became apparent this problem wasn't going away i went to hospital to get fixed, or so i hoped.
I was seen by the ENT Doctors, one of whom didn't know what M.E even was.
Anyway, aside from that and some blood tests, i had no other testing carried out. No chest X-Ray, no MRI to check my brain, nothing.
I wanted to ask what tests should i be pressing for from my Doctor?
I keep reading that people have had extensive thyroid tests but i don't know what they are called or referred too in order to request the tests.
I personally think it's a bulbar reaction to the antibiotics, but without the correct testing i fear this will be a permanent addition to my already chronic list of problems.
I got used to the crippling fatigue, the headaches, the chest and back pain, the nausea, the chills and night sweats, insomnia, etc etc, but i don't think i can accept not being able to swallow or talk properly.
This would be too much.

 

[Jemal]

I had difficulty swallowing as well, but I did not have any problems with my tongue. Food would be stuck in my throat, it was nasty. The doctors did an endoscopy on me and they found lots of inflammation. I have been prescribed Omeprazole (http://en.wikipedia.org/wiki/Omeprazole) and I don't have this problem anymore.

 

[Little Bluestem]

Have you had a swallow test done by a speech therapist? I don't know that they do anything beyond diagnose, so it might not be worthwhile.

 

[WillowJ]

Hi Andrew, I'm sorry to hear that you are having such a rough time. I hope you get some helpful doctors and see some improvement.

in addition to endoscopy, there is an expensive x-ray test where they have you swallow a barium solution and take x-rays whilst you swallow; I understand this could be indicated if what you are drinking or eating washes back up when you try to swallow, or if you choke while swallowing

how is your breathing? do you cough or wheeze? does it hurt more when you breathe? do your lungs feel sticky? can you walk across your house without getting short of breath? if you can walk at all, how many blocks can you walk without getting short of breath? mention any of this to your doc if the answer seems not right. chest infections are not great.

They would do a chest x-ray mainly if they suspected you continue to have a chest infection, or if they thought your heart might be enlarged for some reason.

Normal thyroid test that any doc will think to run is TSH. This checks only whether your brain is signalling normally for thyroid to be made. If there is some other problem, it will not be caught. A thorough doctor will also check T3 and free T4. These are different forms of the actual thyroid hormone, I believe. There is a new thyroid test, a T7, which I do not know much about. There are also new guidelines for interpreting the levels. There is a little info about that here, but someone else may have a better resource.

If you have any reason to suspect Hashimoto's Thyroiditis, (it runs in families, and it also has an increased prevalence among ME/CFS patients), there is a special antibody test for that. It is more expensive.

Thyroid problems could cause swallowing problems, possibly via a goiter (lump in the neck).

best wishes,
WillowJ

 

[Flashster]

Hi Andrew,

I think an manometry test may help with find out the swallowing issues? But this needs to be organised by a specialist.
I have bulbar symptoms, muscle twitching and can only swallow liquids (had ME for some years).
I have had 3 EMGs to rule out various neurological disorders.

I would suggest that you need to be under a good neurologist (mine organised all of the above).

See the update to my swallowing post here:
http://forums.phoenixrising.me/index.php?threads/swallowing.12346/page-3

 

[Symptomatic]

in addition to endoscopy, there is an expensive x-ray test where they have you swallow a barium solution and take x-rays whilst you swallow; I understand this could be indicated if what you are drinking or eating washes back up when you try to swallow, or if you choke while swallowing

I have done this test, but instead of a barium solution, I had to eat barium in a paste-like form, accompanied by crackers. I have an issue with throat-clearing after eating, my GP suspected GERD. After two different proton pump inhibitors didn't help, I had my nose scoped, "in case" it was allergies (it wasn't). Then on to the swallowing study, "in case" it was an esophageal motility issue - didn't find anything there either. Next up was supposed to be an upper GI, but I drew the line there (didn't do it). That was nearly 15 years ago, and I still have the issue, and nobody has been able to determine why.

 

[snowathlete]

I was reading recently about myositis (muscle inflammation) which is thought in some cases to be an autoimmune disease (or a bunch of similar autoimmune diseases) and of course it has some overlaping symptoms with ME/CFS, but one of the symptoms that is common in myositis is trouble swallowing.

I was looking at it because I had been reading up about, um ...(((((brain fog))))...oh, yes, creatine kinase as my levels are consistantly higher than range. I know Dr Tarello found this in himself and his wife when they had ME/CFS, and said it was common in people with ME/CFS. Anyway, there is a paper from yonks ago which found elevated CK and enterovirus in muscles too for post-viral fatigue people, and this is what got me looking at myositis.

So I dont know if myositis is worth you looking into, probably not unless you have other symptoms - I think it often presents with rashes? Anyway, hope this is of some help.

 

[nanciswell]

One reason for difficulty swallowing is called dysphagia is from the clostridia botulinum bacteria.. I somehow have this in my gut causing me another problem with motor control called dyspraxia.. I am doing quite well treating with homeoatphic clostridia bot.. having also to treat for other bacterial issues.. ie mycoplasma/ ecoli, salmonella to help my gut recover..