Last reply 10 months ago

Good morning
I have just logged in as I am waiting to see a neurologist next week.

Sorry for the long post in advance..
My story..
I suffered with migraines most of my young adult life.. with aura and severe pain.. so much so I was bed ridden at times. Not really a day without a headache then I had my second baby and they disappeared. (Thankfully) anyway fast forward 15 years and I had a couple of episodes of a numb left arm.. Gp put it down to trapped nerve! No further problems just occasional sharp shooting pains in my feet. Came and went not debilitating.. always had restless legs .. no pain just had to move legs or lay down.
Moving forward 5 years .. and I had a very random episode of numbness and tingling in left side! All way down my body.. should have gone to the hospital then but just went home from work and it went..
then I noticed I had a patch of numbness in my left bicep and a patch on my left shoulder blade. This is still there.. I then had another episode of tingling and pins and needles all down left side and went to A&E they gave me a CT scan of Brain and it was normal so home I went.. that night it spread all over my body aside from my face and right arm.. I was awake all night because it also felt like Something was pressing on my neck! I was truly terrified
I went to the walk in GP next day and he said my reflexes were brisk and prescribed pregablin for the nerve pain???
I then went to my own GP who took note and did an urgent referral to neuro. I had a full bottom half Neuro assessment and both my plantar reflexes were present
I have since recovered from the tingling but it has left a numb toe and sometimes I get the odd few minutes of pins and needles in my fingers.
I have also lost the urge to urinate I can still go with good output but no real urge.. I have seen a nurse about this but she said I am working okay in that department but referred me to her consultant anyway.
I am unable to sleep so fatigue isn’t a problem more a mental thing I think..
I am aware at mid life if this is MS I am
Likely to have the progressive form and I worry what effect this will have on my working life (I work full time) and my partner and children.
I am hoping to make some friends who understand what’s going on so please feel free to chat. Xxx

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10 months ago

Dear Wonders,

I a glad that you are seeing a neurologist next week. I hope you get an M.R.I. scan, and are properly diagnosed. There is danger in “self-diagnosis”. You may well not have progressive multiple sclerosis (I was diagnosed with relapsing remitting multiple sclerosis last year, aged 49).

Take care of yourself, and stay positive. Multiple sclerosis isn’t a death sentence. Once you get over the initial shock, you can take time to find out about all the treatments/therapies that are available. I myself am on Tysabri and, touch wood, it seems to be doing its job.

Stay strong, and keep us posted.

Best wishes,


10 months ago

Hi @wonders and welcome.

It’s good advice above from @wjgregg. Additionally, you may want to summarise your symptoms, with a timeline, as this could be useful for the Neuro.

A MRI scan is a definite requirement, to allow the Neuro to see if anything untoward is going on. It doesn’t have to be MS, as these symptoms also present in other conditions.

You’re quite welcome on this forum, as most of us started in “limboland”. So, feel free to pose any questions you may have.

10 months ago

Thank you both for your replies
I am so grateful <3

I have written a diary for the appointment and am determined to remain positive! I will post back after my appt xxx
Thank you for the warm welcome x

10 months ago

Hello @wonders, sorry you’re going through all of this. I was diagnosed last year aged 50 with RRMS. For sure it’s a shock to get this far through life and get a diagnosis but for me, it has meant that life has taken a different path and I am OK with this journey now. You may or may not get a diagnosis, but at least you are in the system now so they can push on with sorting you out. You really are among people here who understand what you are going through, will keep fingers crossed for you x

10 months ago

[email protected] – don’t make assumptions about what form the MS (if that is what it is) might be. Most people are diagnosed with relapsing-remitting, but whatever form it is, there are meds for the symptoms. xx

10 months ago

I was diagnosed 12/2017 with Relapsing Remitting MS at just one month short of my 58th birthday. Am I totally over the shock? No. Am I coming to term with the realty and what this all means? Yes, slowly. Seeing the Neuro is wise, they ran loads of rest when I was hospitalized in November 2917 ruling out everything possible as so many things present the same or very similar situations. Just because you’re later in life if it is ME does not mean that it’s a more advanced type. Early diagnosis by a Neurologist who understands what to point is is key to treatment. It’s a journey we are on not a death sentence. Keep asking g questions that’s what I do and will continue to do. Stay connected with others who totally get what you’re ecperience. That’s still one of my biggest chalkenges.

10 months ago

Thank you for your words of encouragement @fayevellemarie @cameron
I am very nervous about my appointment and what it will all mean for me and my family. Ive been awake most of the night again worrying but I am trying not to stress.
It’s good to know I can pop in here for a chat with you all
And again thank you x

10 months ago


I am the wrong person to respond; so I will…

Worrying solves nothing; if you have MS, worrying only makes things worse. So don’t – stop doing that…

You / I / nobody can change certain things in life. Whatever is going on with your body, find a way to deal with that. But first, find out what is going on. Find a way to relax until you know…


10 months ago

When you walk out of your appointment, you will still be the same person that walked into the clinic. The only difference is you will know what you are dealing, and if it is MS, then you will have access to specialist support and medication to slow down the condition. It may not seem it but that’s all positive.

And you can tell folks, this is what it is, you have a reason for all these odd things. And you will be astounded just how many folks have MS, or know someone with it.

And most folks are dIagnosed with relapsing unremitting, I was just short of my 50th birthday.

It’s OK to be scared, it’s natural to worry and stress about “what if” and the future…
You may surprise yourself, that once you know, once the uncertainty is taken away, you are relieved. The diagnosis gives you space to make adjustments to life if you need to.

And you know what? What ever your reaction that’s OK too….

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