Can someone explain please ! I'm back in limbo !

New diagnosis and before diagnosis
1

Hi !

I have been having ongoing tests for MS. After being diagnosed with Benign Ms a few years ago it was retracted as my MRI was clear. I had ongoing symptoms and clinical signs and was reinvestigated by an excellent and expert MS Neuro.

I had an upgoing extensor plantar on my right foot, now both upgoing, loss of feeling in my Rt leg and weakness of my Rt arm and confirmed optic neuritis by an opthalmologist. My new consultant thought that it was MS and in all fairness did MRI’s with and without contrast, VEP , SSEP and Lumbar puncture. He also did repeated tests for Antiphospholipid Syndrome (Hughes Syndrome) which apparently totally mimics MS which came back positive. So I have been diagnosed with this condition. However, I understand that a person can have this and MS.

My VEP was ABNORMAL in my RT eye, the one where I had been diagnosed with optic neuritis, MRI’s have been clear and LP was clear. My neuro made a decision that my symptoms are likely due to the APS - Hughes Syndrome and therefore ruled out MS. I am due to see a haematologist or rheumatologist for the APS in the future.

However, today I received the results of my SSEP from my own doctor.

My right foot is ABNORMAL (delayed response which shows dysfunction in the thoracolumbar region) and I know that my neuro hadn’t had these results when he made this decision that it wasn’t MS based on the MRI and LP as it wasn’t available until later.

I am due back to see my neuro in a couple of weeks but I was wondering if this latest abnormal SSEP along with the abnormal VEP , along with my clinical signs has now opened things up for a diagnosis on MS as well.

It would be helpful if anyone else has experienced this set of problems or similar and can someone explain the significance of the result of this SSEP. I don’t know what it means or what relevance it has.

Thanks so much everyone, I feel lost and in limbo again but so pleased I have this forum.

xxx

2

Hi was your LP negative for OC bands. If so then MS is really unlikely. MS is an autoimmune condition in which the immune systems is active in the CSF. A positive resullt can happen in a small percentage of people who do not have MS so it is not a definite test for MS. If yours was negative then MS is really unlikely.

Moyna xxx

3

Thanks so much Moyna. Yes my LP was negative.

Would you know if the abnormal VEP and SSEP is of singificance at all ?

Once again, many, many thanks. I am grateful for you taking the time to reply.

Does anyone else know ?

xx

4

As far as I know you can get abnornal VEP and SSEP in other conditions (maybe Hughes too?) other than MS. I really think that if the MRI and LP clear then please trust your neuro and forget about MS. I am not a neuro or doctor and dont have a dx of MS either. I am just well read about the condition as have been in Limbo for years. I had radiation treatment for lymphoma in 1990 and they think my cervical lesion has been caused by that as I have a clear LP. All the neuros I have seen (which is 3) all really believe that with a negative LP (have had 2 LPs) it cant be MS. Although some on here think you can have MS with a negative LP. My neuros all say if the immune system is not active in CSF then no ms.

Moyna xxx

5

Nuero,s differ, mine told me that 20% of ms patients have a neg lumbar puncture. As if getting a diagnose was not difficult enough it would help if they could agree on the basics. Bruno I am presenting very much like you, vep shows damage on right side.’ SSEP show up as abnormal on left side. Positive plantar response in both feet, however leisons showed up on my MRI. I have been diagnoided without a lumbar puncture in June. Ann