NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Peg or pej tubes › Reply To: Peg or pej tubes
Hi Carrie,
I’m up in Yorkshire, so like you, too distant to get to Dr Diana’s. I know a little of what you are going through, as I have intermittent swallowing issues, albeit not as severe as yours, although I couldn’t even initiate a swallow on one occasion which made me very anxious indeed, so I can appreciate how you must feel.
I’ve had 2 swallow tests over the years but nothing showed up, of course it was sod’s law that I wasn’t symptomatic on either day. One of the Speech Therapists who the hospital had assigned to assess me (I don’t have any speech problems) way back in 2004, came to see me after the test and when I tried to describe it to her, she thought that maybe my palate wasn’t working properly at the back, though nothing further was done. So is that a muscular thing, an energy thing or a loose tissue thing, I just don’t know. I just knew, whatever it was, was affecting the top part of my throat in the swallow mechanism and led to me aspirating (breathing in) food and fluids. Lower down my throat I didn’t have much issues with swallowing (except the gastric reflux) but I guess gravity played a big part in that’s efficiency.
Anyway I’ve basically been ‘left to fend for myself’ and looked for methods to help me swallow. There was a technique taught to strengthen the muscles but this involved having the chin down (head in flexion) which was bad for me and worsened other symptoms, so I didn’t get far with that, then there was something called the supraglottic swallow but that can have complications, as the original version asked you to ‘bear down’ when you swallow but this, in many of us worsens the intracranial pressure, so you have to omit this part
Since then I have been working on ways to:-
1) Improve muscle function – CoEnzymeQ10 supplementation and also magnesium (important).
2) Increase energy at cell level – effervescent B Vitamin drink
3) Tighten up tissue laxity by helping build better collagen – effervescent C Vitamin drink (which, when taken with meals helps your body to digest the food in the stomach, thus aiding digestion – bonus!)
The Zyrtec from the Z/Z protocol has probably helped too, by dealing with any allergic involvement. The Zantac (from the Z/Z) has helped control the gastric reflux. Some of this may be useful, or someone reading this in the future may find it helpful.
I wish you ‘All the Best’ in your procedures today, I have had cameras in both ends (although not on the same day) and they are not as bad as you fear.
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy); Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium) deficiencies, CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies; Myalgic Encephalomyelitis (M.E.) . . . . and now Growth Hormone Deficiency (due to flattened Pituitary Gland)!