Trouble swallowing (dysphagia) - neurological ?

[Alexi]

Anyone suffer from this distressing symptom ? Been suggested I see a neurologist and I was wondering if anyone on here has any experience

 

[daisybell]

Have you seen a speech language pathologist?

 

[Mohawk1995]

Agree with @daisybell I work with SLPs and they have expertise in the functional aspects of this. To understand what may be causing might take a neurologist or Physical Medicine and Rehab physician who is knowledgeable about ME/CFS. With the latest post today on Small Nerve Fiber neuropathy being found in a different systemic disease (EDS), the chances of it being an issue in ME are quite high in my opinion. A neuropathy impacted your swallowing muscles could then account for some issues. Definitely get it checked out. You do not want to have any aspiration that could lead to Pneumonia!

 

[charles shepherd]

Basic information re swallowing difficulty (dysphagia) in ME/CFS from the MEA

Difficulty with swallowing is a 'red flag' symptom that you MUST go and see his doctor about - if you have not already done so because this is NOT a characteristic symptom of ME/CFS

However, it is a problem that can sometimes occur in people with more severe ME/CFS and I am dealing with such a case at the moment. And in the past, I have had patients who have had to be tube fed or have percutaneous endoscopic gastrostomy feeding carried out as a result.

Difficulty with swallowing is also referred to in the MEA purple book (clinical assessment section on page 51) and in the CMO report on ME/CFS (section 4.2.1.2) - information that could be passed to a GP

Whilst it is possible that dysphagia could be due to a gastric motility problem in relation to ME/CFS (if you have a copy of the MEA purple book the link with ME/CFS is summarised and referenced in the clinical assessment section) there are other explanations which do need to be considered and possibly investigated

So this is not a problem which can be diagnosed and properly managed on an internet discussion forum until you have been given a medical explanation as to why it is occurring

As far as management is concerned, this will very much depend on the cause.

If it does turn out to be related to ME/CFS I would suggest that the GP is asked if you could be referred to an NHS dietitian for expert advice on diet and nutrition. We also have a very experienced dietitian - Sue Luscombe - here at the MEA as part of our medical team who could be consulted.

Useful general information on difficulty with swallowing (medical term = dysphagia):
http://www.nhs.uk/conditions/Dysphagia/Pages/definition.aspx


Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[Mary]

Anyone suffer from this distressing symptom ? Been suggested I see a neurologist and I was wondering if anyone on here has any experience

Dysphagic can be caused by hypophosphatemia - low phosphate: https://www.symptoma.com/en/info/hypophosphatemia

If you scroll down 2/3 of the page to "Presentation", and then to "musculoskeletal system", you'll see it mentions dysphagia. So a simple blood test should show if this is the cause of the problem.

I've experienced this. I don't know what exactly caused my low phosphate - whether due to refeeding syndrome (e.g., when I added in B1) or maybe other sequelae of ME/CFS (there is something called phosphate diabetes associated with many cases of ME/CFS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2360873/); all I know is when I added in high phosphate foods (like kefir), my symptoms abated.

Ordinarily I have no problem swallowing handfuls of pills every day; however, occasionally the seem to get stuck in my throat and take forever to go down (literally hours) and I finally made the connection - when this happens, I load up on kefir and sunflower seeds (both high in phosphorous) and the symptoms go away.

One other symptom I had, especially in regard to the B1, was severe fatigue after an initial energy boost, and I believe this was due to a form of refeeding syndrome causing my phosphate levels to tank.

 

[Alexi]

Barium swallow shows issue lies in initiating the swallow. I find my swallow gets weaker as the day goes on and I've lost weight since this latest episode of dysphagia. Tests are weeks away and I don't know how to manage best in the meantime

 

[daisybell]

Barium swallow shows issue lies in initiating the swallow. I find my swallow gets weaker as the day goes on and I've lost weight since this latest episode of dysphagia. Tests are weeks away and I don't know how to manage best in the meantime

High calorie food if you can... ice-cream, cream etc added to puddings is a good way to get lots of calories in. Have a few biscuits with each hot drink you have - dunk them if it's easier.. snack through the day. Try to find things that you like that are easy for you to swallow...usually easier food is soft and moist. There are some good drinks available - I don't know where you are - but things like Up'nGo have the equivalent of two weetbix in a small carton, and that can be an easier way to take in nutrition. Plus if you can get complan in the supermarket, that will boost your intake...
Hope some of that is helpful... good luck!

 

[Booksellercate]

I went to a doctor with difficulty swallowing in 2003. They did an endoscopy and found nothing wrong. I was put on Prozac, then Clomipramine as it was dismissed as anxiety. The anti-depressants helped a little. But since then, I've never been quite the same. I can't eat large amounts of food-and also have trouble swallowing pills-and food does seem to get caught in my throat unusually regularly.

Last year I became suddenly very unwell (diagnosis pending!) and I also realised I was B12 deficient. I got copies of my medical records and saw that the blood tests in 2003 had shown I had macrocytosis, which is implicated in B12 deficiency. It's a common symptom amongst pernicious anaemia patients. Maybe check your B12, if you haven't already.

 

[Alexi]

Another dysphagia flare up and no nearer a solution

 

[gm286]

Another dysphagia flare up and no nearer a solution

I was diagnosed with SFN (through a skin punch biopsy). I have peripheral neuropathy, nerve pain, and dysautonomic symptoms (Dr. Lapp at Hunter-Hopkins center checked for signs of orthostatic intolerance and found that upon promptly standing up from a supine position, my heart rate went up too quickly and my hands started getting visibly darker-skinned; blood pooling I believe).

Incidentally all this to say that I also deal with intermittent / sporadic dysphagia flares and so far I attribute it to autonomic neuropathy.

 

[Starsister]

I’ve suspected fir a long time that’s my swallowing problems are connected to neurological problems either from SFN or my ME/CFS. Not sure how to get this confirmed medically though.

 

[Wayne]

I had episodic swallowing difficulties for many years. It eventually worsened, which was the catalyst for me to have a non-symptomatic root-canaled tooth extracted. Once I had it extracted, my swallowing difficulties cleared up 80% within 24 hours, and I haven't expereinced it at all for many years now.

I suspect a variety of chronic tooth and gum infections could cause the same thing. Holding a gram of sodium ascorbate in the mouth for 3-5 min. every few hours "might" bring some relief. Sodium ascorbate can be swallowed after those 3-5 min. Other things to reduce oral infections could also be helpful, like coconut oil, tea tree oil, etc.

 

[Eastman]

I personally know someone whose swallowing difficulty resolved after taking magnesium for some other problem.

I think that if there is a neuromuscular problem, a magnesium deficiency is worth considering if another cause is not obvious since magnesium supplementation is easy and relatively safe.

Excerpt from Advances in Magnesium Research: New Data

The classical manifestations of MD are neuromuscular... The bronchial and pharyngeal muscles are especially affected, leading to bouts of bronchial asthma and to pharyngeal spasms and dysphagia - the "lump in the throat" feeling... Ianello et al reported a case in which severe dysphagia to solid food subsided after 4 months of substitution therapy with Mg only.

A case report:

A 41 year old woman presented with a 4 month history of oropharyngeal spasms precipitated by eating, yawning or talking... Due to the severity of symptoms she was admitted for IV magnesium infusions resulting in a dramatic symptomatic improvement within 24 hours.

 

[ChookityPop]

Agree with @daisybell I work with SLPs and they have expertise in the functional aspects of this. To understand what may be causing might take a neurologist or Physical Medicine and Rehab physician who is knowledgeable about ME/CFS. With the latest post today on Small Nerve Fiber neuropathy being found in a different systemic disease (EDS), the chances of it being an issue in ME are quite high in my opinion. A neuropathy impacted your swallowing muscles could then account for some issues. Definitely get it checked out. You do not want to have any aspiration that could lead to Pneumonia!

You predicted SFN in ME/CFS in 2017, that's seriously impressive.
I struggle with dysphagia and have confirmed non-length dependant small fiber neuropathy from skin biopsies and autoantibodies (TSHDS and PLEXIN D1). Have you come across SFN patients with dysphagia?

 

[ChookityPop]

I’ve suspected fir a long time that’s my swallowing problems are connected to neurological problems either from SFN or my ME/CFS. Not sure how to get this confirmed medically though.

Have you found the cause?

 

[Zebra]

Just to clarify for those who may check out this thread in the future, there are 3 areas/sources of dysphagia: mouth, throat, and esophagus.

Dysphagia that occurs in the mouth or throat is best assessed by ENT and Speech Language Pathologist (ENT/SPL), with specific diagnostic tests.

Dysphagia that arises from the esophagus is usually first assessed by a general Gastroenterologist. Ideally they would refer you to a GI who specializes in GI motility disorders for special testing.

 

[Zebra]

Another dysphagia flare up and no nearer a solution

Hi! Just wondering if the underlying cause of your swallowing difficulties got diagnosed. Hope you are doing OK!

 

[ChookityPop]

I was diagnosed with SFN (through a skin punch biopsy). I have peripheral neuropathy, nerve pain, and dysautonomic symptoms (Dr. Lapp at Hunter-Hopkins center checked for signs of orthostatic intolerance and found that upon promptly standing up from a supine position, my heart rate went up too quickly and my hands started getting visibly darker-skinned; blood pooling I believe).

Incidentally all this to say that I also deal with intermittent / sporadic dysphagia flares and so far I attribute it to autonomic neuropathy.

Have you found out anything more regarding the cause of your dysphagia?

 

[gm286]

Have you found out anything more regarding the cause of your dysphagia?

Not so much. I try to limit its frequency / intensity and that seems to work for me. It mirrors an issue with my muscles overall: I get frequently winded, overworked, and muscles start to cramp / lock up. The same thing happens with my throat muscles.

As already mentioned, this could be some kind of process involving autonomic neuropathy and/or ME/CFS. No neurologist has found anything obvious. I am taking Mestinon / pyridostigmine, which has not exactly done much to remedy the problem, so it's not a Myasthenia Gravis type process. I've had nerve conduction testing and that did not pick up on anything (no apparent nerve issue). I attempted a muscle test (EMG) but could not handle the pain. It did not pick up on anything with the first needle inserted into my shoulder area.

I would bet that the issue is most likely mitochondrial, some issue with cellular processing.

 

[ChookityPop]

Not so much. I try to limit its frequency / intensity and that seems to work for me. It mirrors an issue with my muscles overall: I get frequently winded, overworked, and muscles start to cramp / lock up. The same thing happens with my throat muscles.

As already mentioned, this could be some kind of process involving autonomic neuropathy and/or ME/CFS. No neurologist has found anything obvious. I am taking Mestinon / pyridostigmine, which has not exactly done much to remedy the problem, so it's not a Myasthenia Gravis type process. I've had nerve conduction testing and that did not pick up on anything (no apparent nerve issue). I attempted a muscle test (EMG) but could not handle the pain. It did not pick up on anything with the first needle inserted into my shoulder area.

I would bet that the issue is most likely mitochondrial, some issue with cellular processing.

It Seems it can very well be neuropathy related. I have autoimmune/immune mediated NLD SFN (tshds and plexin d1 positive). Just curious, have you had all myositis antibodies tested?