I cannot move my Tongue and Swallowing is difficult

[taniaaust1]

How horrible for you.. that sounds scary **sending you some hugz if you are accepting of those**

I hope you find out what is wrong but swallowing issues can be a ME symptom.. surprisingly its been put at occuring in 55-60% of ME/CFS patients http://wwcoco.com/cfids/bernesx.html

Issues with swallowing can happen with mitochrondrial diseases too (so maybe it is that side of the ME issues which affects swallowing in ME.. in which case you may want to consider taking things which can help the mito. Many drugs can make mito issues worst so take care.

You may find the following article of diseases in which swallowing is an issue useful http://www.nature.com/gimo/contents/pt1/full/gimo35.html . If I was in your shoes I think I'd be pushing my doctor for a referal to a specialist.. whatever specialist with your other symptoms also being considered, most point towards seeing. be it a mitochrondrial specialist or whatever.

 

[AndrewB]

Ive booked an emergency appointment with a neurologist in a private clinic.
The appointment costs £225 pounds and any testing would cost even more, but i just don't think i have three months to find out via NHS as this is getting worse each day.
Thank you everyone for you replies and i hope to be back here next week with some answers.

 

[maddietod]

Good luck! Are you seeing the neurologist today?

 

[AndrewB]

Change of plan, my GP want's me to go direct to ER so that the testing for M.Gravis can be commenced straight away.
If it turns out that it's not M.Gravis, then i really dont know what i'll do.

 

[Nielk]

Good luck, Andrew and please keep us posted.

 

[warriorseekspeace]

Good luck, Andrew. It's an awful position to be in to have to do much of the thinking for one's doctor, and feel you must push, when you really aren't sure yourself. At least that's how I felt, when I only had MD's who refused to become properly informed about this illness.

 

[taniaaust1]

Change of plan, my GP want's me to go direct to ER so that the testing for M.Gravis can be commenced straight away.
If it turns out that it's not M.Gravis, then i really dont know what i'll do.

Even if it is not M.Gravis... it will be good to have it ruled out.

 

[AndrewB]

Ive just returned from the hospital and i basically wasted my time.
They put a camera up my nose, saw nothing, took a blood test,
said aside from slightly raised white cell count nothing is wrong.
The Dr told me it must be part of the M.E and tried to give me antidepressants,
which i wont take.
So im still struggling to swallow, i can't breathe, and they are quite happy that
im fine. Im so angry right now. The effort it took physically to go there today
only to be told more or less that im imagining it.

 

[Nielk]

I'm sorry about your experience, Andrew. The hope was that they would find what was causing this distressing symptom.
I wish that I can have some constructive advice for you. All I can give you is my sympathy and prayers that this will soon disappear.

 

[Seven7]

Ive just returned from the hospital and i basically wasted my time.
They put a camera up my nose, saw nothing, took a blood test,
said aside from slightly raised white cell count nothing is wrong.
The Dr told me it must be part of the M.E and tried to give me antidepressants,
which i wont take.
So im still struggling to swallow, i can't breathe, and they are quite happy that
im fine. Im so angry right now. The effort it took physically to go there today
only to be told more or less that im imagining it.

I get problems swallowing, to the point I cannot even do my saliva. I got an endoscopy? or something like that, In the swallowing barum (I think is called) when they take the endoscopy while you swallow a VERY disgusting gue, they could see I do have problems swallowing, at the time I had esophagites. And they gave me prevacid 60mg a day. I take it when I can't swallow or have coughing spells, and it does seam to help a few days later. But to be honest with you I think Is part of my OI.

 

[AndrewB]

ive not idea what to do now. should i demand a scan in case this is cranial nerve damage ?
of the 3 years ive had M.E ive never been unable to swallow or had mobility problems with
my tongue.

 

[warriorseekspeace]

Hang in there, Andrew. I'm so sorry you're going through this. Glad you're posting about it, as there are many people on here who care about you.
What about stopping the medication Kina was talking about which lists your problems among possible side effects for that med?
WaSP

 

[AndrewB]

There's an M.E specialist coming out to see me next Monday. After the hospital visit ive now fully relapsed into being completely bed bound, and my throat is getting worse.
My GP was appalled at the Hospital for discharging me so soon but he said not all Dr's accept M.E as a physical illness.
I feel like i should mention the Dr's name who discharged me in such a dismissive manner but i can't recall his name, i'll remember it though because every M.E patient in Manchester is at serious risk of neglect if you have the misfortune of having to see this guy.
As a nurse was taking my details for the paper work, this Dr said

''Don't encourage him there's no physical reason why he cannot swallow and he doesn't need to provide details he's going home now''

As you can imagine this made me so angry. He was mocking in tone and the fact he prescribed me Antidepressants for acute swallowing restrictions goes a long way to explaining how uneducated and dangerous this Dr is to fellow M.E patients.

 

[waiting]

There's an M.E specialist coming out to see me next Monday. After the hospital visit ive now fully relapsed into being completely bed bound, and my throat is getting worse.
My GP was appalled at the Hospital for discharging me so soon but he said not all Dr's accept M.E as a physical illness.
I feel like i should mention the Dr's name who discharged me in such a dismissive manner but i can't recall his name, i'll remember it though because every M.E patient in Manchester is at serious risk of neglect if you have the misfortune of having to see this guy.
As a nurse was taking my details for the paper work, this Dr said

''Don't encourage him there's no physical reason why he cannot swallow and he doesn't need to provide details he's going home now''

As you can imagine this made me so angry. He was mocking in tone and the fact he prescribed me Antidepressants for acute swallowing restrictions goes a long way to explaining how uneducated and dangerous this Dr is to fellow M.E patients.

AndrewB, did they take an x-ray to rule out megaesophagus?

 

[AndrewB]

no x-rays or MRIs i told them ive been getting painful 'pressure' headaches, and that ive been getting an odd
pain in the very centre of my chest. They took blood and i had a camera look in my throat by an ENT specialist,
but that was all.
the only abnormality in my blood was a raised white blood cell count. the rest of the blood test was just basic
liver and kidney function tests.

 

[waiting]

no x-rays or MRIs i told them ive been getting painful 'pressure' headaches, and that ive been getting an odd
pain in the very centre of my chest. They took blood and i had a camera look in my throat by an ENT specialist,
but that was all.
the only abnormality in my blood was a raised white blood cell count. the rest of the blood test was just basic
liver and kidney function tests.

Can your GP just send you for an x-ray ( of your esophagus) himself? And can he send you for a blood test to rule out myasthenia gravis ( I mean a requisition for the blood test specific for M.G.) ?

 

[AndrewB]

He was expecting those things would have been done on Monday. Im just not physically able to
return to the hospital at the moment, im completely fatigued, i couldn't tolerate the travel at the moment.
My GP says im the worse case of M.E he's ever seen and wants to pass my medical care to an M.E
specialist. But if i hear anything about Cognitive therapy i will ask him to leave my house.

 

[WillowJ]

I'm sorry about all this. I hope they are able to figure out something which is actually useful.

Did they think the white cells indicated an infection? They claim this can happen from stress, but they should re-test (I think the stress WBC would go back down soon?). I sometimes think something infectious could possibly be what causes my tongue to swell, but it hasn't been as bad for me as you are describing.

 

[waiting]

I know this is an urgent situation, so I'm sure you're not in a place to do a lot of reading, but in the event this is useful to you, I'm providing this link to a relevant blog post by an ME patient ( a law professor before getting sick). See the bottom portion of the post where she describes another patient's experience in the ER for something unrelated to ME. Your GP believes and supports you but perhaps you could share it with him... or with the ER or ME specialist if you need to. Don't be concerned about the fact that the blog is hosted on "Psychology Today".

http://www.psychologytoday.com/blog...a-chronic-fatigue-syndrome-ii-readers-respond

Also, I'm wondering if instead of going to the ER, there is just a lab you could go to, with requisitions in hand... I mean when you've recovered from yesterday's exertion, hopefully soon. I'm not sure how it works in the UK.

 

[taniaaust1]

of the 3 years ive had M.E ive never been unable to swallow or had mobility problems with my tongue.

That's the thing with ME.. its symptom complex can really shift over time and what symptoms you may have in the first years.. may not be the most worrisome ones you have later as as completely new symptoms can come in (old symptoms may leave). Its all part of the course of the illness. My symptoms over this illness have completely shifted quite a few times and are so different to what they were

Ive heard of ME people even getting a new symptom from it after 20 or more years (I know someone who has had CFS for 30 years.. and developed MCS after 25 years of it so at that point then had to leave her part time work). I too developed a lot of my other ME symptoms a long time into the illness.

My GP says im the worse case of M.E he's ever seen and wants to pass my medical care to an M.E
specialist.

Join the boat.. any GP see "who believes in ME/CFS" wont take me on as a patient unless Im also under the care of a ME/CFS specialist. Ive been rejected by many GPs just cause they see my case as too bad and complex.. having a patient with severe symptoms they dont understand, scares them esp if they can see those symptoms at times (Ive had a doctor freak completely and ring an ambulance..just cause he saw me in one of my bad ME crashed states). I think most who have severe ME find themselves all too commonly in this situation.

But if i hear anything about Cognitive therapy i will ask him to leave my house.

Anxiety will need to be just one of the many possibilities, that someone seeing a person who has a swallowing issue needs to consider... as trouble swallowing isnt an uncommon sign of anxiety. I suggest to make it clear to the ME specialist that you are only getting anxious AFTER having difficulties in swallowing so nothing about CBT possibly comes up.

* Note in people that do actually have something wrong making them not able to swallow.. anxiousity can make things worst. So maintaining calmness when one has swallowing issues is important no matter what the issue is.

I wish u the best for when the ME specialist comes and sees you.