what should i do next?

New diagnosis and before diagnosis
1

Hi all

Had the results of my MRI and its clear. The neurologist sent me a letter jsut saying that this is good news as it means I do not have MS or indeed any other demyelination after all, and therefore does not need to see me again.

I am really confused as to what to do now, my GP rang on Saturady and said that he would like to refer me for a second opinion. My Gp saw me at my worst when I couldn’t walk properly, couldn’t hold anything with my right hand etc.

The neuro said in his first letter to Gp that he agreed with Gp assessment of brisk reflexes on right side, mild ataxia, poor balance and weakness on right side. He said there was no evidence of a functional disorder and he suspected demyelination.

Before today I had decided that if MRI was clear I would just try and get on wth things, even though following the three really bad months, I have been left with a really weak right leg, tight calves and tingling feet in the morning.

Anyway last night I got up to one of my children. I was fine for about 10 minutes then suddenly had an attack of vertigo, (which I have had a couple of times before) The next thing I knew I was waking up on the floor with my husband trying to rouse me and my 12 year old son terrified about what had happened to me. Apparently I was out cold for several minutes. Today, apart from a bruised back and head where I fell, both legs are very weak, and my right arm is trembling. This had scared me as I am often here alone with our four children (the youngets is 2)as my husband works away a lot. I dare not even drive today so have had to keep the children home from school. This is the first time I have ever kept them home because I have been unwell. I have tried to reassure my son that I am fine but I know he is concerned, what on earth do I say to him. He also remembers a bad fall I had in September when I just lost balance negotiating the doorway in the kitchen. This is all so unlike me and I really don’t have the time for it.

What sould I do now, accept the neurologists word or get a second opinion as recommended by GP? I am so confused

Debbie x

2

Hi, you definitely should go for that 2nd opinion. Just because the neuro found nothing on your MRI, there is obviously something wrong.

I have been tossed from limbo…to MS…to HSP…back to MS and now its looking like HSP again…what a farce, eh? I`ve seen 13 neuros in 13 years and am still in limbo.

good luck to you.

luv Pollx…

3

Absolutely get a second opinion.

Completely ridiculous of the neuro to leave you high and dry without any guidance about where to go next

Really not sure what to say to your son, sorry. So hard to know what to do for the best, and it depends so much on the child. Honesty without too much detail but with a lot of reassurance? One thing’s for sure, it isn’t a brain tumour or anything like that or else your MRI wouldn’t have been clear - perhaps that will help him?

Thank heavens for your GP! For now at least, I would trust him and do as he advises.

Karen x

4

Get that second opinion, and you didn’t say whether you had a full brain and spine mri, the brain can be clear, but still have lesions on your spine.