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next steps?

Hi everyone, I am new here and really looking for some advice. around 18 months ago I was referred to a neurologist because of a list of symptoms including pins and needles, numbness in hands and legs, vertigo, pain in most limbs and a tightening pain around my chest/abdomen. My neurologist has been great and seems on the ball with referring me for test. my first was a brain MRI around a year ago, this came back with signs of inflammation on my brain stem. My neurologist explained this was a sign of ms and explains some of my symptoms but not all due to location. I next had a lumbar puncture and spine mri which both came back normal. 2 weeks ago I went for a brain MRI with contrast. I received a letter this week from Neuro explaining that my mri results was normal and reassuring and that she cannot recommend any further treatment for me. I am waiting for an appointment to meet with her again but I am scared she is going to say there’s nothing more we can do. I do not understand how my first not was abnormal but this one is. I understand why she would assume this is reassuring but am I silly to be annoyed that this is normal? I just want answers and I’m starting to feel like nobody is listening. In May this year I had to take 3 weeks off work as i was struggling to walk, was in a lot of pain and kept losing all feeling in my hands along with extreme fatigue and many more symptoms. I first assumed this may be a relapse but surely this would show in an mri? Now I am wondering what next steps could I possibly take to get to the bottom of this? and if this is not ms then what could this be? sorry for the long post I didn’t know where else to turn and I’m at my wits end with this now.

hi gemma

sorry that your diagnosis is on hold.

talk to your GP and ask him/her what s/he thinks.

s/he may be able to refer you to a different consultant or at least s/he could contact the previous one asking for more information.

Lymes disease has very similar symptoms to ms but i would have thought that this would have been tested for when you were seen by a neuro. this is one thing your GP could ask the neuro.

your GP is the first port of call so make use of him/her.

also check your stress levels because stress makes symptoms worse.

try to relax now by whatever means floats your boat.

it will be important during the wait for answers.

good luck xx

Hello Gemma

What a confusing time for you. One minute you’re virtually diagnosed with MS, the next you’re not.

To be honest, I think you do have to go by what your neurologist says. If initially not all of your symptoms could be ascribed to the inflammation on your brain stem, that tends to rule against the symptoms being MS related. And following negative LP plus negative MRIs of brain and spine, it does seem that it’s not MS.

It’s possible that the original inflammation was nothing like the inflammation you might get with MS.

This does not mean that your symptoms are any less real. Nor does it mean that you should be referred back to your GP by the neurologist. When you see her again, I think you need to ask what else could be causing your symptoms. There should be more that can be investigated.

It could be that you have something like Functional Neurological Disorder (see https://fndhope.org/fnd-guide/ for information on this) or Antiphospholipid Syndrome (aka APS, see https://www.nhs.uk/conditions/antiphospholipid-syndrome/ )or some other disorder.

Don’t just give up on finding a solution to your symptoms, there must be an answer somewhere. Meanwhile you are stuck in limbo. I am sorry. It’s a very uncomfortable place to be.

Sue

Hi gemma it could have been a clinically isolated syndrome. I think to be honest if it was me which it was in 2007 and i just went round and round in circles, wait, live your life, watch your diet eat healthy, don’t stress. My mantra was this very simple. IF ITS MS it will finally show itself and it did 16 years it took lol. BUT i got there in the end. Cant say i am happy about it, as the label never changed anything really.

inflammation can lessen. On my first MRI brain scan which i paid for, it was noted i had a large area of high signal foci in the deep white matter of my brain, which the radiologist said could be demylinating but felt it was more likely down to my age lol. 1951. After that as i had positive VEP test for bilateral optical neuritis, i did start having spinal MRI which over the course of years showed lesions in different places, then finally the last vep test showed again positive brain slowing and i had my diagnoses of PPMS.

I had a negative LP, BUT it was full of O BANDS but the blood test alongside showed something which made it negative.

so well i stuck with it my neuro stuck with me, BUT you have been given a reprieve for now so why not enjoy it. sometimes the stress keeps the symptoms going, and if it was a CIS it maybe still have residual stuff which hasn’t healed yet perhaps.

Like carole said try and relax for now, as if it is MS it will one day show itself.

good luck. xxxx

https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis