MS? 2 years and no diagnosis

New diagnosis and before diagnosis
1

Hi All

I hope someone can help

I had an MRI and lumber puncture 3 weeks ago and I was sent the results that were meant for the consultant! As you can imagine all sorts were going through my mind as it was quite detailed, but still gave no conclusions. (its below)

My best friend has MS, is a nurse and is convinced I have MS too, I am so confused and I don’t seem to be able to get any answers, this has been going on for 2 years.

The lumber puncture showed there is the same pattern IgG in my spinal fluid as my blood. They were looking for MS, but the results say its unlikely to be MS because its is only one oligoclonal band and its in both my CSF and serum. Could they be wrong?

The MRI showed I have several small T2 high signal foci within the white matter on my brain, they have said there are changes since the last one 6 months ago, but no specific details, I also have degenerative problems with my facet joints in my neck.

I have shooting pains and weakness in my legs (started 2 years ago), its like tooth ache with electric shocks. (they often go underneath me. I am tired all the time. I have pain in my eyes like pricks. My skin itches all the time and lately when I need to go to the loo I have to get there quickly as I cant seem to hold on for long. I also get a pain in my side/groin that feels like a stitch, it will last for several days at a time.

This is what was put on the lumber puncture report:

Oligoclonal IgG patteren present in the CSF similar to the serum oligclonal IgG pattern. This is NOT indicative of intrathecal synthesis, but rather, the pattern is consistent with passive transfer of oligoclonal IgG from a systemic inflammatory response. The pattern is more common in neuropathies, Guillain-Barre syndrome, systemic autoimmune diseases, neoplastic or paraneoplastic syndromes, as well as systemic infections. MS is unlikely.

I was diagnosed with MGUS 18 months ago with IgG of 2g/l Lambda paraprotein present in the mid/slow gamma region, it has gone up now at 5 g/l I am under a haematologist in the Myeloma clinic although I haven’t got Multiple Myeloma yet and it may never progress.

Can anyone shed some light on this please, thank you in advance

Vicki

2

Hiya Vicki,

I presume your from Australia; welcome.

For a ‘posative’ response oligoclonal band should show in your CSF but not in your serum.

95% of people with a definite diagnosis of MS exhibit oligoclonal bands on a spinal tap. This may sound impressive but so do 90% of people with Sub-Acute Sclerosing Panencephalitis and 100% of people with Herpes Simplex Encephalitis among other conditions. Positive spinal taps are indicative of an immunological response but they are not diagnostic for a particular condition. That 5% of PwMS do not exhibit oligoclonal banding means that spinal taps neither rule-in nor rule-out MS.

I do suggest you look at Karen’s excellent explanation about MRIs and brain; A brief beginner's guide to the brain and MRI - New diagnosis and before diagnosis - MS Society UK | Forum

It was stupid not sending your report to your Neurologist first. They are the people to interpret this medical jargon for you.

Your electric shocks are probably L’Hermittes all associated with the degenerative problems with facet joints in your neck mult-sclerosis.org

Good luck

George

3

Thank you George for the information. I am in the UK.

I don’t think its the Sub-Acute Sclerosing Panencephalitis you suggested, as I have never had measles and I am 50, it seems that it happens in children and young adults (I hope its not that as its awful). I tested negative for Herpes, Lymes disease, Lupus and a couple of other things were negative, so they are ruled out.

I have tested positive for ANA and ANCA, so it points to an auto immune, but there are lots of them to choose from. I have always said there is a link to the facet joint problem and my legs giving way, but they seem to ignore any connection. I am worried about the oliclonal band in my blood and serum as I cant find any answers.

My Neurologist did call me when he realised I had been sent the detailed results as well, but just said I needed more tests and not to worry. He cant be that worried as my appointment isn’t till the end of June.

I did loose the sight breifly in one eye 4 years ago and was told it was a migraine, but the neurologist doesn’t agree with that.

However all these symptoms, the waiting for results and appointments, getting nowhere fast with no answers is frustrating. I will sit and read the link you sent about the brain and try to digest it.

Many thanks for your help,

vicki