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December 7, 2007 at 9:57 am #6005
Long story short
I have been suffering for 10 years.
from 1999-2003 some strange spasms, twitching and nerve pain. in 2003 i got flu shot and all ell broke loose. pain that i have never felt. entire body spasms, twitching burning tingli. all test to date normal except sed rate elavated. mri, emg/ncv, eeg,muscle biopsy, all norml.
my question is i know flu shot made whatever was going n worse.
does anyone get tightness and spasms and nerve pain in throat and neck. stabbing pain all in throat and neck and muscle so tight its feels like its bieng riped. during this i have trouble swallowing and hurts in the front bones of throat and maked ckicking sound to swallow from the tightness. and some times the tightness in face makes my eyes squint shutt on its own. nd vibraton in ear lobes and nerve pain in ear lobes.
i even get twitching in toungue and burining in toungue
please let me know
has any meds helped anyoneDecember 8, 2007 at 9:16 am #55011
Welcome to our forums. How frustrating to not have a diagnosis. Have you researched the “Miller-Fisher” variant of GBS? As my residuals change/increase after all these years, I am having more throat issues with the numb/burning-tongue stuff. I “dislike” that feeling 😮
As difficult as it may be, don’t stop researching and hound the docs until you get an answer! Good luck.December 8, 2007 at 1:53 pm #55026
Me! I had the same symptoms!
I do not have GBS or CIDP, but this forum has been my family of help during the time when I was undiagnosed.
My symptoms turned out to be hypothyroidism/Hasmimoto’s (the autoimmune variant) with B12 vitamin anaemia.
When I first went to hospital, I was examined for GBS, MS, Borrelia, celiac and a lot of other things. I had CT, MRI, blood tests, emg test, etc. The doctors did not find out anything and sent me home with severe vertigo and not being able to walk on numb, aching, sleepy, tingly legs with weaker and weaker muscles. This was all over my body. Aching muscles everywhere – pain moving around. Not being able to distinguish hot from cold in certain spots on the skin. Dropping things from my hands, not being able to carry (had to use backpack). Tongue feeling larger, hair falling out creating small nests when bathing, extreme fatigue, memory and concentration problems, depression etc.
Thyroid problems are common, if you are in your fourties or older, etc. Check out this forum:
[QUOTE]The thyroid gland lies in the front of your neck in a position just below your Adam’s apple. It is made up of two lobes – the right and the left lobes, each about the size of a plum cut in half – and these two lobes are joined by a small bridge of thyroid tissue called the isthmus. The two lobes lie on either side of your wind-pipe.[/QUOTE]
This means that if you have thyroid problems, the thyroid gland can swell up and press on your neck and give tightness and a raspy voice.
To rule out thyroid problems you should be checked for the following by blood tests:
diabetes, Thyroid: TSH, T4, T4 free, T3, T3 free, TPO antibodies, TRAS antibodies, deficiency in B12 vitamin also called cobalamin, iron deficiency, ferritin, transferritin, D vitamin, Calcium, Potassium.
Thyroid problems are often accompagnied by other co-morbid conditions, and thyroid problems can be a bit difficult to get diagnosed.
Researching I found that B12 deficiency can give metallic taste and/or other funny tasting problems, parastesia, feeling and touch problems, walking and coordination trouble, memory problems, depression, symptoms from the nerve system. First symptoms: tiredness, heart beating, shortness of breath and dizziness, head aches and pains in the legs.
[QUOTE][B]What is the health risk of too much vitamin B12?[/B]
The Institute of Medicine of the National Academies did not establish a UL for this vitamin because vitamin B12 has a very low potential for toxicity. The IOM states that “no adverse effects have been associated with excess vitamin B12 intake from food and supplements in healthy individuals” . In fact, the IOM recommends that adults older than 50 years get most of their vitamin B12 from vitamin supplements or fortified food because of the high incidence of impaired absorption in this age group of vitamin B12 from foods that come from animals . [/QUOTE]
It is important to check the vitamins a couple of times or regularly as there is a possibility that the vitamins are not absorbed in the stomach either by foods or vitamins.
[B]Meeting in my thyroid association: [/B]
[QUOTE]I have just attended a meeting in my local thyroid association where the speakers were an endocrinologist and a dermatologist.
The dermatologist said regarding hypo and the effect on skin, hair, nails and the mucous membranes:
– the skin is pale, cold, scaly, wrinkled, dry, itchy, reduced perspiration, yellowish skin colour, oedema on hands-face-eyelids, skin bleedings, blood vessel bursts on arms and fingers.
– nails have slow growth and are striped /ridged at longitude and brittle and splitting.
– hair is coarse, sparse, hair loss under arms and pubic, loss of the outer fringes of the eye brow.
– mouth – large tongue, thickening of gums, mucous membranes get thrush/yeast infection and is affected generally – including in the vagina
Treatment: the underlying cause of hypo is treated, and most of the symptoms disappear. Maybe the mucous membranes will have to be treated extra for yeast infection.
TIPS: If you itch it is good to sleep in a cold room. B-vitamin strengthens the nails.
This was some of my notes from the meeting.[/QUOTE]
If you have problems with your eyes, this could be serious if related to a thyroid problem, especially hyperthyroidism.
Good news if you have a thyroid problem, you can be treated.
I hope that you find out what is wrong – and do not give up!December 8, 2007 at 8:08 pm #55039
hi tulps & welcome,
earlier in my recovery it felt like someone was pulling & ripping the skin off my face. it was a disgusting feeling. take care. be well.
gene gbs 8-99
in numbers there is strength
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