Forum

Help!!

Hi all

This is my first post. I think my problems started about six or seven months ago, I became increasingly weak and wobbly in my legs. It felt very strange. Walking had been like breathing, I didn't need to think about it, but suddenly I need to concentrate because my feet didn't seem to know where they were going! I kept tripping, especially when walking on rough surfaces.

At first we put the problems down to spinal damage. I'd suffered a burst fracture of L4 about 18 months previously and it seemed reasonable to think the issues were related. I saw a spinal specialist and an MRI suggested some bony overgrowth and a prolapsed disc that he felf could be responsbile for the issues with walking. I was referred to a spinal surgeon and hoped a small op would put things right. Unfortunatley the spinal surgeon suspected a problem connected to my central nervous system and he referred me on to a neurologist.

I found the neurologist difficult to communicate with at the first appointment but he organised an MRI of my brain. This showed I had a large 'hole' that was filled with CSF. As it was 'linked' to the other lakes of CSF normally found in that region of the brain he didn't feel the abnormality was causing any problems and suggested it may have been a problem I had been born with or a bleed I'd suffered during childhood.

The MRI didn't show evidence of lesions usually associated with MS, although he agreed a lot of my symptoms were suggestive of MS. I am 56, much older than the usual MS age group at diagnosis.

He has referred me on to have various blood tests, a lumbar puncture and electical stimulation tests.

I told him I was desperate to have some treatment and to get back to normal. He looked at me and siad he understood but that presented two major problems. The first was that to treat me he needed a diagnosis and he might never get a diagnosis. The second was that even if he could treat me the treatment might not have any affect. I asked what he thought would happen and he told me that I had 'progressive myelopathy' that could result in the loss of any use in my legs. On the bright signs there were no neurological symptoms in my upper half so he thought that would be unaffected.

A couple of days later I saw my GP and he prescribed me steroids, just to see if they could help. Looking at the NICE guidelines I've realised the course he has given me - 60 mg per day for one week followed by 40 mg per day for a second week - is much lower than that recommended.

I feel so frustrated and so frightened.


Any ideas?

 

friday

Hi Friday, it is all so worrying isn’t , I was dx with ms 6 years ago when I was 50 and they say life begins!!! Looking back I had symptoms for a few years previous to dx but I never really thought about them. I was taken into hospital 61/2 years ago with a suspected stroke, all one side of my head and face went numb and I was so fatigued. While in hospital I had an MRI which showed numerous lesions and then I was sent for a lumber puncture which came back positive for ms. I was lucky I think as I was dx within 6months which when reading so many posts on here was very quick. I was prescribed a very high dose of steroids but unfortunately I had an adverse reaction too. I have been on dmd’s for nearly two years but as I have had 3 relapses(having one at the moment) I am questioning whether they are helping. I am just waiting for an app to see the neurologist. Please feel free to pm me with any questions and welcome to this site it is a godsend. Take care and I hope you get some answers soon. Karen x

Hi Friday

I do empathise with you - frustrated and frightening is a good way of describing this experience.

I've been in Limboland over 5 years now - a bit like you I have bony overgrowth in my spine, degeneration, and a disc protrusion. My main problems are neuropathic pain and difficulty with walking far, and also fatigue.  I now use a stick for walking anything much over 5 mins continuously.

When I was first referred to a Neurologist, 4 years ago, she said that it can sometimes take up to 10 years for things to show in tests that make sense of symptoms!  I was horrified! But it's not unlike your own neuro's response.

The only treatment I have is for the neuropathic pain, i.e. Pregabalin, but nothing else. I think much of the fatigue is due to the fact that it takes so much effort and concentration to do things (like walking) that I used to do without thinking.

I don't have any real advice except to say that your Neuro is definitely taking you seriously by doing the blood tests and arranging an LP and electrical tests.  These may well show up something that will help with a diagnosis.

In the meantime, patience is needed in good supply, but do post on here with any questions, or just to pour out your frustration. Many of us are in the same situation and really do understand how you feel.

Let us know how things go.....

Bren