What to do while I wait?

I am currently waiting on my Neurology appointment/MRI scan and MS is certainly fitting all of the symptoms.

I had a ct scan on Wednesday as they suspected a stroke but that was ruled out.

While I wait and I try to deal with the increasing panic of how I will manage as a single working parent and full-time carers I want to try and start doing what I can to prevent any additional mental or physical ill health.

Are there diets or exercises that others would recommend I do. I also have suspected IBS so not as easy as ‘eat healthier’ - I have also been using a stick for a few days due to my ‘dead’ left leg.

Thanks in advance

Hello Nic

I think it’s possible you are preparing yourself for a diagnosis that is relatively unlikely.

Many people post on here that they fear their symptoms are pointing towards MS. Or even that they are certain their symptoms mean they have MS.

Clearly the doctor(s) you’ve seen suspect ‘something’ neurological, but you can’t expect MS until the fat doctor has sung the words. Or something to that effect.

I’m not trying to downplay the symptoms you are suffering. Certainly there is something not right and hopefully the MRI will show the neurologists what that something is. I hope for your sake that it’s diagnosed as a malady that’s resolveable rather than MS or worse.

Supposing it is MS though, these days there are countless disease modifying drugs which aim to reduce the number and severity of relapses. This means once your current symptoms resolve (and by far the greatest number of people with MS have the variety that comes in waves, or relapses followed by complete or at least partial remission), you’ll be able to take a drug to reduce further occurrences. This in turn would make future disability less likely and/or less severe.

Honestly, MS isn’t a life shortener, nor does it herald death, definite disability or wheelchair use. Which is I know the kinds of fears someone in your position can’t help but have.

I hope the MRI and neurology appointments come very soon and then that you get answers to what’s affecting you ASAP.

Do repost on here for help with symptoms, information about what is afflicting you or just empathy regarding your worries.

Let us know what symptoms you have and we’ll try to help.


Many thanks Sue and you are right of course I could be going down a ‘rabbit hole’ I don’t need too - it’s the waiting and worrying that is causing the stress.

Symptoms wise.

I have had the dizziness/vertigo for more than 5 years but was initially diagnosed as labyrinthitis and then vestibular migraine.
I have had double vision and difficulty focusing despite recent eye test showing eyes ok.
Dead left leg and foot since the episode last week - painful and have been using stick when it has no sensation. I can only sit for a short time at my desk before it is totally ‘dead’ - I can only lie down for a short time before tingling starts. Dead arm has mostly worn off.
Altered sensation on forehead/eye and cheek down to nose on right side - comes and goes since Friday night.
Two episodes of urinary incontinence with no sensation. I have had problems for months - unable to wee or weeing but bladder not completely empty. I have also had ibs type symptoms for several months.
Fatigue - this has been ongoing for months.
Difficulty focusing - I had put this down to stress but on reflection this has went on for a long time.

Hello again Nic

I have two further points to make after reading your new post.

First, you’ve listed your symptoms on here. In preparation for your neurology appointment, try writing them down with approximate dates, when things began and how long they lasted. If symptoms got better completely or partially, write that down. These will be questions asked by the neurologist.

Second, with regard to your bowel and bladder symptoms, you don’t need to see a neurologist to be referred to the local bowel and bladder service. See your GP for a referral.