My journey began in October 2002, although according to my Neurologist it was undiagnosed for about 10yrs.
I was lying in bed and I was unable to move my legs, and had severe tremors so much so that I was hospitalised.
During my time in hospital I was found to be severely B12 deficient, and was sufering from Subacute Combined Degeneration of the Cord, the way they found this out was by miriad of tests and standing upright legs together and close your eyes I just fell over.
I was then put on a monthly regime of injections , all was good for about 3 months and then the stiff muscles ataxia cramps loss of various movements oedema etc started so my specialist increased the injections to fortnightly.I am not allowed to drive.
9 months ago I started to have intermittent paralysis of both legs ,arms. and hands, I could not eat a meal without parlysis happening in my arms and legs so I was unable to go anywhere without a carer in most cases my wife taking me I have now undergone further tests MRI, SSEP(evoked potentials)Nerve conduction tests EMG,specialised Blood tests all normal, the Neurologist had no answers, so I had further Nerve Conduction Tests they to were normal , the Neurophysiolist who did the tests also could not explain the reason for the paralysis.
I now have my motorised wheelchair using chin control, and is so good to have regained my independence.I have nicknamed it the "Beast" as it is very large.
My condition has improved in regards to my arms and hands but as soon as I do any exercise or walking my legs become very heavy and painfull and the paralysis episodes occur,but I am persevering,I am currently having physio every 2 weeks at my local hospital that has been happening now for almost 3 years and my physio is great.
I am now having a very worrying new symptom if I do walking for any length of time my legs collapse below me without warning.
The muscles in legs when I stand up are like steel
you are a very strong person.Your fight against the disease is highly praiseble.
Also i appreciate your treating doctor as well as physiotherapist.
Trust them fully and keep them informed about your progress.
I am going to do some guessing. Clearly you have a disease process that is contributing to your issues.
That being said, the most probabile reason for the intermittant paralysis is alteration in osmolality, probably caused by blood sugars. Very small changes in osmolality can compress nerves, especially if they are surrounded by inflamed tissue. The compression of the nerves then results in intermittant paralysis.
It is not "psychological".
That is the reason the paralysis happened "after a meal". Your blood sugars went to 450, the osmolality became altered, and the nerves became pinched. Paralysis or nerve twitching is the result.
The degeneration of the cord made you particularly susceptable to this syndrome.
You should convice your physician to allow you to try Metformin or Glyburide, as well as having an insulin clamp protocol performed.
I'd like to see how you would do if your blood sugars were kept at 115 or below.
Also, as well as "trusting your physicians fully", if you subscribe to that idea I have a number of investments that will made you lots of money with a wonderful fellow named Bernie. Also I know of a great investment opportunity in a Bridge that goes to Brooklyn.
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