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Update

Just thought i would Update.

I had a letter from the neurologist which was a copy of what he sent to my GP, not surprisingly full of long medical words etc like suspect spinothalamic lesion, overy brisk reflexes on one side and downward flex on fingers? upward flex on great toe

another word was myeloradiculopathy

decided not to look them up.

since my appt ive had more feeling of tight band around my upper ribs which is really really uncomfortable, and hellish lower back pain and my legs are beginning to feel weak. still numb (but not numb) and tingling all over my body, and still getting lightning bolt type feelings going down arms and legs, and horrible headaches and now face pain.

but onwards! i have my brain and neck scan on sunday 28th a diffusion weighted?? whatever that is.

ever felt like crawling into a corner and crying? well thats how i feel right now

Hello Laine

​Yes, I understand, it’s one of the things that can really floor you, the absolute gobbledygook technical language that’s meaningless. Coupled with additional symptoms and an MRI that comes accompanied by more techie terminology. It’s surprising that you can come out from under the covers of your bed.

I can’t help you with any technological language or give definitions of any of the terminology, nor can I really offer you any explanations.

It does sound like you have started the MS ‘hug’ which is the crushing ribs feeling. Also the electric shock feelings down your legs, ad face pain could be trigeminal neuralgia. Having said that, until and unless your neurologist gets the test results and actually says the words, you can’t assume it’s definitely MS.

What I can do is try to reassure you. That you are having the tests you need. You will get to the end of it and, with an ounce of luck be given a diagnosis. And if the end result is an MS diagnosis, then you should get some DMDs, an MS nurse, some other relevant drugs to help with symptoms and the reassurance that you know where you are. Yes, you will have the down side of an MS diagnosis, but sometimes an answer is better than limbo.

I’m glad for you that your next step is soon.

Sue

Sue, Thank you for your lovely reply.

i totally agree with you, i feel at the moment i am either imagining it or going bonkers until someone puts a label onto what is happening. i am definitely a coper, once i know what happening i can cope. but being numb over most of my body, the pain, the tight ribs etc, it feel like the only thing that is working is actually my brain. i cant even hold a pen to write at the moment.

but its the little things… struggling to dress toilet and shower cutting up food or even preparing a meal ( i live alone). wanting to do so much especially in the garden and find i either cant or am absolutely shattered if i just clean and refill the bird tower and bath.

i have dismissed a lot of strange symptoms over the years because after spinal surgery in 1993 they told me i possibly have adhesive arachnoiditis.

i always reported the falls though. the neurologist found one of my old scans from 2005, and said as far as he could see the lesions found on earlier scans had “disappeared” so i basically dont have adhesive arachnoiditis!

could i really have started MS symptoms that many years ago and no one noticed or dismissed it?

all i want to know is what is happening to my body, once i know - i know that i will be fine.