I came across this forum so I thought I would share what is happening with me at the moment, perhaps see what people think.
I have numerous physical problems since early teens, the main one being a dipped chest with a twisted & curved spine. I have always had to deal with constant back pain which I have learnt to manage, however over the last few months I have been experiencing a range of problems that are not the norm for me.
I waited it out for as long as I could stand but I went to the doctor last week and she ran some initial tests which I apparently failed severely across the board, so she has referred me to see a neurologist. She said she can’t diagnose it herself but she believes it is likely to be MS judging by my symptoms.
So the symptoms that she has picked up on are:
Numb left foot with drop foot.
Loss of sensation in areas of feet, legs, arms, hands and face.
Severe tremors in hands.
Unable to focus eyes, sensitivity to light and slow reactions speed.
Slurring when I talk and saying the completely wrong words and stopping mid sentence for long periods.
Weakness in both feet, legs, arms and hands.
Over sensitive reflexes, almost violent jerks.
The symptoms that I have been experiencing:
A constant pulsating pain from the neck down extending to hands and feet that at times is sharp in random places.
Weakness in legs and arms, feels like I have been walking all day or lifting.
Fatigue where I just need to sleep without much notice.
Migraines arching from the back of my head to behind my eyes.
At times feeling like I am moving when I am not. When I do move it feels heavy like I am walking in deep water.
Random patches of numbness all over with a stinging nettle sensation, including my face.
I have now lost the feeling in all my fingertips on my right hand, and two in my left.
Putting things in the completely wrong place and not even realising until my wife points it out.
And as mentioned above, I am constantly mixing my words, stopping mid sentence and forgetting what I am saying or just stopping completely without any recollection that I have been talking at all. My wife has said she has been finding it incredibly hard to understand what I am saying. She said I am just stopping and starting with long pauses, using the wrong words or just forgetting conversations full stop, which as you can imagine has caused some friction for a while!
I am not fretting about the possibility of having MS, I will wait until I have seen the neurologist. However, it seems my symptoms are just getting worse so I would be interested to see what others make of it.
like your GP said, we nor she can diagnose MS, only a neuro can do that, so I hope you don’t have to wait too long for your appointment. If you’re in the UK it’s likely to be months. You could go private for an initial consultation and if needs be then be referred back to NHS for treatment. (Actually you may well see the same neuro for both!)
Some of your symptoms are similar to some of mine, but that’s no indication really.
So you’re now in limboland, not a good place. Did your GP explain what tests the neuro will do? Has she prescribed anything to help with pain?
Try not to stress, not easy I know for you or your family.
Yes I understand, I’m not expecting anyone to diagnose me, just interested to see if any of those symptoms are familiar with anyone else.
No she didn’t say anything but I have had a look at what to expect, MRI and possibly a spinal tap? I’ve had plenty of MRI’s when I was in my teens, but nothing like a tap.
She did say she could offer me pain medication but as I hadn’t been to the doctors in six years she guess I wouldn’t want them. I don’t really like to take medication unless I can help it as I have had bad experiences in the past.
As Ang said, some of your symptoms could be caused by MS. But the problem with MS is that there are so many symptoms, many of which are also shared by other diagnoses. No two of us with MS have identical symptoms either.
So the only person who can diagnose MS, or in fact rule it out, is a neurologist and only then after conducting a battery of tests. The neurologist will initially take a history from you, running through what symptoms you have, when they started and if they’ve improved at all. So having notes with you of what’s happened and when is a good idea. The neuro will probably then do a physical exam, looking at your eye movements, your reflexes, pin pricks, your balance, gait and other tests the value of which is a bit of a mystery to most of us.
If they think it’s warranted, the neurologist will then refer you for further tests, which are likely to include blood tests, an MRI scan, visual evoked potentials (or VEP, a type of eye test) and maybe a lumbar puncture. Only when they’ve completed the tests will they (hopefully) be able to diagnose you. Unfortunately some people have all these tests and are still left in limbo as the results could be inconclusive.
Often people go into their appointments, have perfectly understandable conversations, then come out and have utterly forgotten what has been said. This could be blamed on so called ‘Brain Fog’, or slight cognitive problems, or simply from stress and worry. So it’s helpful to take someone with you who should understand that their job is to remember everything you don’t!
