View Full Version : Help needed from new member
Hi everyone, I posted this on a few other forums so please excuse me if you have read this before.
I have an undiagnosed neuro problem.
Basically my left leg is paralysed from the hip down, no feeling or movement. My right has limited feeling but good movement. Very little muscle atrophy in both legs. I am due to see a urologist in January about urine retention. I use a full length KAFO on my left leg and use underarm crutches or a wheelchair for long disatances.
I have had 2 MRI scans, lumbar puncture, EMG tests, evoked potentials, blood tests and urine tests. All were negative. I take Baclofen for spasms in my left leg, Temgesic for nerve pain radiating from the centre of my spine down both legs, burning, buzzing and cold and hot sensations on both legs.
This is the 3rd year now and I am due to have another MRI in January, but I am not hopefull that anything will show up.
It is getting me down as I am still in the dark as to what my problem is....I did have a motorcycle accident around 7 years ago and hurt my back but did not need to go to hospital and have had no other health problems in my life.
At the moment this problem really is taking over my life, my work is suffering and I am not sure how long I can keep working for as I get tired really easy and suffer bad pain in my back and legs.
Any thoughts or people in the same situation, please get in touch or reply here.
Many thanks
Take care
Stu
ps....I am 38 and live in England.And the spell check does'nt work for me !!!!!!
Wise Young
11-22-2006, 09:07 AM
Hi everyone, I posted this on a few other forums so please excuse me if you have read this before.
I have an undiagnosed neuro problem.
Basically my left leg is paralysed from the hip down, no feeling or movement. My right has limited feeling but good movement. Very little muscle atrophy in both legs. I am due to see a urologist in January about urine retention. I use a full length KAFO on my left leg and use underarm crutches or a wheelchair for long disatances.
I have had 2 MRI scans, lumbar puncture, EMG tests, evoked potentials, blood tests and urine tests. All were negative. I take Baclofen for spasms in my left leg, Temgesic for nerve pain radiating from the centre of my spine down both legs, burning, buzzing and cold and hot sensations on both legs.
This is the 3rd year now and I am due to have another MRI in January, but I am not hopefull that anything will show up.
It is getting me down as I am still in the dark as to what my problem is....I did have a motorcycle accident around 7 years ago and hurt my back but did not need to go to hospital and have had no other health problems in my life.
At the moment this problem really is taking over my life, my work is suffering and I am not sure how long I can keep working for as I get tired really easy and suffer bad pain in my back and legs.
Any thoughts or people in the same situation, please get in touch or reply here.
Many thanks
Take care
Stu
ps....I am 38 and live in England.And the spell check does'nt work for me !!!!!!
A few questions. When you say limited feelings on your right leg, do you mean that you can feel touch but not pinprick, pain, or temperature? When you lost function, did you have a episode of fever? Over how long did you lose the function?
Wise.
Hello Dr Wise, thanks for replying.
I have limited feeling in my right leg, I can feel pressure but not pin pricks and tempreture is a problem also.Not sure how to describe it really but it is no where near as bad as the left leg.
I never had any sort of fever. The problem started on my left leg which had a numbing sensation below the knee, this spread to the thigh over around 3 weeks, then I seemed to lose movement also over another 2 weeks....my right leg in the meantime seemed ok but went the same over a period of around 3 weeks also. I have now been like this for around 3 years now and it does not seem to be progressing any more.
Thanks again
Stu
Sue Pendleton
11-22-2006, 10:02 PM
Hello Dr Wise, thanks for replying.
I have limited feeling in my right leg, I can feel pressure but not pin pricks and tempreture is a problem also.Not sure how to describe it really but it is no where near as bad as the left leg.
I never had any sort of fever. The problem started on my left leg which had a numbing sensation below the knee, this spread to the thigh over around 3 weeks, then I seemed to lose movement also over another 2 weeks....my right leg in the meantime seemed ok but went the same over a period of around 3 weeks also. I have now been like this for around 3 years now and it does not seem to be progressing any more.
Thanks again
Stu
Did you have any vaccines within a few weeks before this all started?
Or have any of the MRIs included your vascular system specifially arteries in the abdoman? Normally when you can feel and even move some but cannot distinquish pain from pressure or cold from hot you have a problem with the anterior (front) part of your spinal cord. I'm thinking of a bleed from an unfound anuryseum (sp?) after your motorcycle accident that deprived part of your cord of oxygen. Wise? Good guess? :zombie:
And spell check doesn't work for me either.:thinking:
Hi Sue, I had no vaccines prior to all this starting. The first MRI was only lower back and legs (I think) and when the spine consultant saw nothing wrong he refered me to a neuro consultant who then ordered a full body MRI. When this showed nothing I then had a lumbar puncture, EMG, evoked potentials and blood tests. All were negative. The only thing I can think of was when I had the lumbar it took the doctor a very long time to find the right spot to stick the needle in and he asked if I had any spine problems. Not sure if this has any bearing on anything. I also had a few xrays of my spine and this showed up nothing as well.
I am due for another MRI in January but I am really afraid this will show nothing again and I will be discharged from my consultant again and this will go on forever !!!!!!
Thanks for all your help once again
Stu
Wise Young
11-24-2006, 12:51 PM
Hello Dr Wise, thanks for replying.
I have limited feeling in my right leg, I can feel pressure but not pin pricks and tempreture is a problem also.Not sure how to describe it really but it is no where near as bad as the left leg.
I never had any sort of fever. The problem started on my left leg which had a numbing sensation below the knee, this spread to the thigh over around 3 weeks, then I seemed to lose movement also over another 2 weeks....my right leg in the meantime seemed ok but went the same over a period of around 3 weeks also. I have now been like this for around 3 years now and it does not seem to be progressing any more.
Thanks again
Stu
Stu, your description is consistent with what is called a Brown-Sequard syndrome (Source (http://www.emedicine.com/emerg/topic70.htm)) which occurs when half of the spinal cord is damaged. This leads to a loss of motor function and pain/pinprick sensation in the lower limb on the side of the injury but preserved pain/thermal sensation and motor function in the lower limb on the other side. Because the locomotor pattern generator does not require bilateral innervation, most people with Brown-Secquard syndromes will recover walking. On the other hand, sensory recovery is often limited and people continue to find that they cannot detect the position of the leg on the affected side and cannot detect pain and thermal sensations on the other side.
http://sci.rutgers.edu/forum/showthread.php?t=16270
http://sci.rutgers.edu/forum/showthread.php?t=15098
http://sci.rutgers.edu/forum/archive/index.php/t-3334.html
Wise.
Once again a big thank you for your help Dr Wise.
The condition you mention does seem to fit the bill as to my condition. One thing I am still unsure of is why nothing has shown up on the MRI scans and also the other tests I have had. I thought an MRI was pretty conclusive in showing up damage to the spinal cord ????
I would appreciate your help in explaining this as I would like to go to my consultant with your finding and maybe get him to investigate further but I am afraid he will dimiss me as making this up to "fit the bill" so to speak.
Thanks for at least giving me some hope in finding out what is going on with my body.
Stu
Sue Pendleton
11-24-2006, 08:17 PM
Thanks Wise. And this is why I am not a doctor.
Hi again, I see my consultant on Wednesday and I am going to mention Brown Sequard to him. I would still like someone (anyone !!!) to try and explain why all my tests were negative and especially the MRI scans. The more I think about it the more the symptons are exactly what I am suffering but surely some sort of scaring or marks on my spinal cord would show up on any scans ???????
Any help before Wednesday would be great.,
Thanks again
Stu
wheeliecoach
11-27-2006, 01:35 PM
Speo-
I was diagnosed with Primary Lateral Sclerosis (PLS) after 5 years with normal tests. I was told it was all in my head (even though I went from walking fine to needing AFOs...to crutches, to a chair). Some of those tests only look at peripheral (sp?) nerves and damage to those versus central nerves (which was the problem with me). Now...I do have some "abnormailties" on my tests...but nothing that would have caused someone to stop and think about it. My diagnosis was done by the process of exclusion of other problems. My advice to you is to make sure you do not let doctors tell you you are imagining things (because you are the only one who is experiencing the symptoms) and to stay strong in finding your diagnosis.
maryonwheels46
11-27-2006, 05:55 PM
Don't give up trying to find a Dr that can help. Tell them that you are tired of this going on and it is their specialty so find out the cause. If they can't find out the problem to send you to someone who can. I hate it when I have to take a stand with them but obviously you have something going on. I have had Dr's tell me that well I don't know what it is but at least I know what it isn't. Don't take it. They get paid for telling you nothing. Take it up on yourself. I would look up the threads Dr Wise gave you and print out what sounds good. Of course Dr Wise is giving his opinion (which he knows what he is talking about) and is not giving you a diagnoses but at least the Dr's can have something to go by.
Mary
Hi again, I am convinced through the help of the good people here that the diagnoses of Brown Sequad is correct but I am still in need of answers by anyone who cares to inject something to this thread.
My main question is why after 2 MRI scans and the 3rd will be on the 21st of this month has nothing showed up on the scans.
I am repeating myself slightly but I did have a motorcycle accident around 6 years ago and hurt my back, so could this have caused some sort of lesion that has heeled and only now I am feeling the affects ? But why nothing on any of the tests I have had and I thought MRIs were the best thing since sliced bread.
I am really getting paranoid now and I am thinking this is all in my head !!!!!!!
If my next MRI is negative what do I do ??????
Thanks again
Stu
SCI-Nurse
12-03-2006, 12:44 PM
An MRI is only one tool for making a diagnosis of a neurologic disease. Your neurologist should of course also be doing an extensive exam, and considering other tests such as an SSEP. You should discuss this with him. Non-traumtic causes of spinal cord damage (for example, viral disease) may not show up on an MRI at all.
(KLD)
Hi, I have already had :
2 MRI scans
Evoked potential test
EMG test of both legs
Lumbar puncture (very painful and ill for over a month)
Dose of steroids
I take Baclofen, Temgesic and Diclofenic.
So all the tests were negative with nothing showing up at all.
What else is there and I am still not sure that if I have a lesion to my spine then it should have shown up on the scans.
Thanks
Stu
Sue Pendleton
12-04-2006, 05:51 PM
Speo, did any of your MRIs include contrast dyes? My lesion from the spinal stroke I had is very tiny. Looks like a tiny tiny needle. Many also change with time so they are harder to read. Your doctor may also want to take about 15 tubes of blood this time to test for everything in this world and Mars..
Thanks Sue, I never asked about contrast dye. I am due to go for another in a couple of weeks and if nothing shows on this one then I am giving up and just getting on with life as it is getting be really annoyed !!!!!!
Thanks
Stu
boncialu
12-28-2006, 12:58 PM
Speo,
i got a postinfectious myeloradiculitis on November 1997. I was left with a limited walking capability ( about 500 meters ) and a general weakness , but no other impairments . Starting from 2000 the situation started to decline steadily and now i am confined to a wheelchair ( not to speak of other ,even worst , problems ). MRI did not show any lesion to the spinal cord and was invariated till 2004 , when some contraction of the spinal cord started to show . However , elctromyography (EMG) and evoked potential (SEP,MEP) indicated always damage to the spinal cord ( the variations over the years were mild , they did not match the worsening of the situation ) .
Hope this can be of some help. Good luck,
Luciano
Thanks Boncialu, it is strange but I got the results from my MRI yesterday and low and behold there was nothing significant showing on the scans.
I am a little fed up of it all now and getting a second opinion in Britain using the NHS system is complicated and could take up to a year !!!!.
I am going to maybe use the information gleaned on these boards to show my doctor and then just leave it until my condition gets worse (or better :) ).
Not sure what else I can do now, my work is suffering and I am going to have to go on long term sick leave, my family are all worried and I am just depressed.
BUT......I will not let it get me down to much as there are many writing on these forums that are in a worse situation.
Thanks
Stu