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Looking for advice - worried

Hi, I am a 38 year old male, around the last week of july i started getting numbness rising up my body to the point of my waist. During this time a saw a neurologist in mid August who advised i have a Mri from which he spotted inflammation of t3 t4 on the spine and advised i go to hospital for steroids if i struggle to walk. Whilst he booked more mris and blood tests. A few days later i struggled to walk due to spasms in my abs and breathing difficulty and went to AE on saturday of the bank holiday weekend. I spent a week in hospital whilst they carried out brain mri, LP, contrast mri and was given a 3 day course of steroids 4 days after being admitted. Last Saturday (1st sept) i was discharged with a diagnosis of CIS whilst we wait for the LP results. although the numbness and tightness in legs and chest were still present when i left. I am now getting numbness in my arms and hands. Do i go back to A and E? Please advice as i am worried.

Hi Rog

I’d suggest phoning the neurologists secretary and asking him/her to arrange an appointment with the neuro.

That way, you will have had the new symptoms documented officially, and it’s possible that the neurologist would then prescribe you some disease modifying drugs (DMDs). Which could then stave off further relapses.

Going to A&E might be a bit of overkill. The doctors in A&E aren’t neurologists so won’t be able to do anything useful.

It’s a frightening place to be in, stuck with a CIS diagnosis and deeply worried about conversion to MS and hence your future.

Seeing them neurologist again might help, they might even have the LP results.

Otherwise, have you been given the contact details for an MS nurse? I’d ask the neuros secretary for those anyway, talking it all through with a good nurse is a good way to get your head straight.

Or of course come back here.

Sue

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I have tried to make an appointment with the neurologist but the response from the sectetary was he would not see me until all the results from the tests were back. Also dont have any contact details of a ms nurse. I might ask for those.

Do get hold of an MS nurse. Honestly a good nurse is worth their weight in chocolate. They will understand what is going on for you and should be able to give you a bit of reassurance.

It does make sense that the neurologist will want to see you after all the test results are in, it can take a while for everything to be read, reported on and collated, together with your history and physical examination. Only then will the neurologist be able to make any kind of definitive diagnosis or prescribe drug therapies.

Hang in there, get plenty of rest, try to put the idea of life with MS from your mind if you can. Just remember that a) it might not be, and b) if it is, there are treatments, disease modifying drugs, physiotherapists and your life will not be over.

Sue

I got a phone call from the hospital yesterday asking for me to go to give a blood test. Upon questioning why they said it was needed as part of the lumbar puncture. Reading online shouldn’t the blood serum be taken at the same time as LP? Not 2 weeks later as with me? Will these cause the results to not be accurare

i don’t remember having blood done at the time of my LP.

please don’t overthink it all and end up getting stressed.

it is never too early to learn relaxation techniques, these have seen me through some bad times.

Hi Rog123

It’s ok for the blood sample to be taken within 2 to 3 weeks of the lumbar puncture. Anything beyond that makes for an unreliable comparison between the two.

See here under ‘sample requirement’

https://www.birmingham.ac.uk/facilities/clinical-immunology-services/neuroimmunology/other-services/OCB-patterns.aspx

Hope this allays your concern,

best wishes

Thanks guys i just get worried. Keep thinking the worst. I will watch some youtube videos on relaxation techniques.

Hi. I’ve got to have contrast mri on my head, neck and back. I’ve also got to have a lumbar puncture. Was told from the hospital yesterday that it doesn’t matter if I don’t get a date for the lumber puncture cos the consultant will send me for one when I go to get my results. I’ve looked up lumbar puncture on you tube aswell. It don’t look nice but if the Drs didn’t think we need it he wouldn’t of refereed us.

Hope you get yours soon.

Hi guys, what would be the best way to get intouch with a ms nurse? I called my nurologist secretary asking about a ms nurse but she didnt help.

Hi Rog

Is there a Community Neurology Team in your area? (Try Googling it!) If so, phone them and ask. Otherwise, try phoning the hospital and asking for the Neurology Nurse team. There is usually one who cover general neurological nursing and the local MS nurse would either be part of this team or you’d be able to make contact through them.

Or, ask your GP (might be pointless, but worth a try if the other things don’t work.)

Failing that, phone the neurologists secretary again. If s/he can’t connect you with an MS nurse, contact the hospitals Patient Advice and Liaison Service (aka PALS). You’ll find their contact details on the hospital website.

Sue