11 replies to this topic

[dfnapier]

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 defficient, 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 and I was put on an excercise programme at the Rehab department of the hospital, oh and by the way I was told I was not allowed to drive.
So I started to get on with my life bought myself a mobility scooter to get around on and then 9 months ago I started to have intermittent paralysis of both legs ,arms. and hands, I cannot eat a meal without my parlysis happening so now I am unable to go anywhere without a carer in most cases my wife taking me and am unable to use my scooter any more.
I am now undergoing further tests MRI normal, apart fom buging discs C3 -7 and L2-4 plus narrowing of disc space and slight stenosis, my SSEP( evoked potentials )was normal, so of course what does the good DR say I think it is caused by stress even my own GP and the people who see me at Rehab do not agree with his diagnosis, so I am to have some further Nerve Conduction Tests to go and then I will review this with my own GP and the hospital people.
This week I decided to keep a record of the paralysis episodes and it was quite frightning how many times all I could move was my head.
To enable me to again become independent it appears that I will have to get a motorised wheelchair which is similar to ones tetraplegics use.
But dont get me wrong my glass is half full not half empty.
Does anyone in the group have any similar experiences.

Edited by dfnapier, 12 May 2007 - 04:25 AM.

[dfnapier]

Since my last post I have had further Nerve Conduction Tests and an EMG at the Hospital, no reason for my periodic paralysis has been found, that series of tests has lasted 6 months.
Have been assessed for a Power Wheel Chair, they tested me at my local hospital using chin control, and I passed with flying colors, I then was allowed to use it at home for a further 2 days and although it is very demanding I was profficient in its use and felt qite comfortable in myself.
Now I will have to wait and see if I can get funding, and hopefully I will be independant once more in about 6-8months.
The episodes of paralysis are still continuing and eating dinner sometimes is a nightmare, apart from my head and mouth and swallowing etc everything else freezes..
I have an appointment with my Rehab Doctor on Friday to review things to date.

[LuckyinKentucky]

Sorry I have no experience with your kind of problem, but I'm glad to hear your dealing with the symptoms well. Does your paralysis come with loss of sensation as well, and have you gone anywhere besides your local hospital? Have you spoken with doctors who have experience with your degen issue?

[dfnapier]

I know my arms and legs and hands are there, I just cant move them.
I have now seen 3 different neurologists, and they have not got a clue.
My Doctor has asked me to go back and see my original Neurologist , but after 6 months of investigations I do not feel that way inclined.
So unless things get out of hand I will just soldier on.

[dom]

dfnapier, on Aug 7 2007, 01:56 PM, said:

I know my arms and legs and hands are there, I just cant move them.
I have now seen 3 different neurologists, and they have not got a clue.
My Doctor has asked me to go back and see my original Neurologist , but after 6 months of investigations I do not feel that way inclined.
So unless things get out of hand I will just soldier on.

i find it very very strange indeed that in this day and age a diagnosis can't be found???

[LuckyinKentucky]

Of course there there but can you feel sensation in them (pin prick, hot/cold) when they're paralyzed? And have you went to a doctor that has treated your types of conditions before? What area have you been seeing neurologists in?

[dfnapier]

LuckyinKentucky, on Aug 8 2007, 01:18 PM, said:

Of course there there but can you feel sensation in them (pin prick, hot/cold) when they're paralyzed? And have you went to a doctor that has treated your types of conditions before? What area have you been seeing neurologists in?

I have feeling I am just unable to move, the Neurologists I have seen to date are specialists in the field of my condition, to begin with it presented itself as MS or similar conditions, but after exhaustive tests while I was in hospital that was ruled out.
Unlike most neurological conditions both sides of my body are effected at the same time.
I have severe degenerative disk disease in my lumber region and can suffer severe pain both there and my mid thorasic area.
This condition I suffer from is unique and has been seldom if ever seen by my specialsits or Doctors, my wife who is my carer and I often get the impression from the Neurogists it is no big deal this condition I suffer from, my own Doctor however is extemely supportive.
The condition is most probably caused by my severe B12 levels, that were not picked up for about 10yrs and the neurological damage that resulted from this, I suffered very badly with balance problems, spasticity, exhaustion, incredible mood swings and paralysis, everything apart from occaisional spasticity and the paralysis is now controlled by fortnightly B12 injections.
I have been asked to return to the hospital in a year as they are working on gene technology, and this may help me.

[wheels5894]

I was reading your problems and wondering when I thought of someone I had seen on a continence board. Have a look here.

if you look for earlier posts for Simon you will see he has had various bouts of paralysis and huge abdominal spasms cause foecal incontinence. I am not trying to diagnose your condition but it took more than 5 years for Simon to get diagnoses and more than one neurologist so I reckon it is worth a rread for you.

[tintinboots]

When I read this post it rang many bells, I started with my problem 3 years ago, pain in my lumbar region, but at that point i was able to walk, although it was with a slight limp, i was diagnosed with "fibromyalgia" as time moved on, my pain was down both sides of my body, if i walked more than 25 metres, from waist down I would be numb! well a strange frozen feeling, i was dragging my feet, and had to hity the floor , to take my weight from my lunbar area, but as soon as the numbness would wear off, i would find i had suffered "foecal Incontinence.

After 3 long years of MRI scans Nerve conduction test, Evoked potetetial test, I have now been told I have TSP/HAM, otherwise known as Tropical spastic paraplegia/htlv-1 Myeloneuropathy, it presents itself , and be confused with Multiple Scelerosis or Motor neurone,

The symptoms are..
Weakness of the legs
Sensory disturbances
Bladder and bowel dysfunction
Ataxia
Numbness.

It can go unconfirmed until a HTLV1 serolgy is tested!
I have been told by my neurologist that it is very rare here in the UK, and to be honest, I have had to do most of the research about this myself, apparently St Marys Hospital in London are doing trials, My GP knows little of this illness, and the incontinence nurse , said to me, oh, its like MS its somthing to do with the myelin sheath!
It was only in November I got the dianosis, so I still have much to learn about this myself, as Im being told , very little right now.


Ian

[Notwheels]

I am C3-7 Incomplete and my degree of paralysis not only varies day by day but even hour by hour. Sometimes the spinal cord gets injured in some weird ways and it refuses to follow patterns invented by doctors.

Notwheels

[ems]

<quote>I know my arms and legs and hands are there, I just cant move them. </unquote>
how do you type?

emma.

[Jsec64]

wheels5894, on Aug 8 2007, 08:43 AM, said:

I was reading your problems and wondering when I thought of someone I had seen on a continence board. Have a look here.

if you look for earlier posts for Simon you will see he has had various bouts of paralysis and huge abdominal spasms cause foecal incontinence. I am not trying to diagnose your condition but it took more than 5 years for Simon to get diagnoses and more than one neurologist so I reckon it is worth a rread for you.

hi
Tried to view link to post that you refer to but not available. Any chance you could repost link. Thanks in advance.
John