Another question and stiiiiiiill waiting.......

New diagnosis and before diagnosis
1

Hi everyone

Just wanted to say how much this forum is helping me. I keep dipping in and out - it’s helping me keep my sanity!

Some days I feel like I kinda imagined the whole thing. I haven’t had any of the really awful symptoms that some of you have to put up with, no loss of strength or control and no nasty eye symptoms. The numbness and pain I had in March/April has completely gone but since then I don’t think I’ve had a period where something hasn’t been happening.

The thing is, everything that’s happening has been really mild, sometimes ‘only just there’ and very transient. It might be a vibrating on the top of my thumb on a few occasions over a few days, or persistent muscle twitches. Not constant, but in the same spot several times a day. In weird places like under my rib, near my belly button or in my upper arm. I’ve had a really faint fizzing feeling on the palm of my hand that I intermittently notice throughout the day - but again really faint, only just there, a kind of ‘ringing’ feeling after I’ve touched something. Today I noticed it on the back of my hand too. I’ve had a vibration on the sole of my foot like I’ve rested my phone against it, but that only happened once. Currently I have a fine fizzing feeling on one of my feet that I sometimes notice when walking and for the last 4-5 weeks I’ve been waking up with numb arms and hands. It happens regardless of my sleeping position but us getting progressively worse. Always goes after a few minutes of flapping like an idiot.

As I’ve had lots of ‘thinking’ time whilst waiting to see the neurologist I’m now starting to link other historical events to my list, such as loosing my sense of smell about 10 years ago. It comes back occasionally but only to varying degrees. Most of the time I can’t smell much at all. Also about 3 years ago I had a period for about 10-12 months where I kept falling over. One minute walking along and the next staring up at the sky. Very embarrassing! I put it down to having ‘weak ankles’ as it seemed to happen if I hit any uneven ground. It massively made me loose confidence.

Sorry, so having gone off on a complete ramble I was wondering whether any of this rings bells with anyone else? Also, the majority of my symptoms have been right sided but my fizzy hand and foot are on the left. Can this happen with ms or would it be unlikely? I don’t really mention any of this to my hubby as he feels that these are all things that many people experience and doesn’t think I should worry. Maybe he’s right.

Sigh…

Betty x

2

Hi Betty

Like you I am yet to be diagnosed with anything and am waiting to see a neurologist after this latest period of heaviness down my right side along with vertigo and facial tingling has now persisted for over 6 weeks. I had never bothered anyone with previous symptoms before after being told that I could be having panic attics when it felt like I was having a stroke on a couple of occasions, previously affecting my left side and disappearing but now settled in the right.

I have also been totting up all the historical stuff (IBS, migraines, vertigo, numbness to name a few) and feel like I’m being a bit paranoid. But mentioned it all to my GP yesterday and she said to write everything down so that it can all be discussed when I see the neurologist.

I know it’s not great for you just now, but good to know it’s not just me!

Hope you get some answers soon

Helena

3

Hi, when do you see a neuro?

It is a good idea to take someone with you to the appointment, as a second pair of ears.

Your symptoms may be ms, but there are so many conditions that mimic ms.

Your neuro will test for other things as well as ms.

hang in there hun.

Several posts mention it being possibly all in their head!

pollxx

4

A year on and still waiting, i do feel my neuro appointments are a waste of time. “So you haven’t got worse but you hav remained with the symptoms, see you in 6 months. We may do another MRI but they are expensive!!”

The waiting is hard, i just want to feel better…

5

You have made good use of that thinking time by recalling incidents in the past because that is the sort of thing the neuro needs to know about. He/she will probably be as interested in what has happened before as in what is happening now.

Maybe your husband is right and you are being hyper-vigilant and adding two and two and making five. Maybe your feeling that there is something deeply odd going on and it might be serious is right. Maybe you are both a bit right but not quite. Time will tell.

For what it’s worth, my personal experience is that MS things sometimes happen on one side and sometimes on both, by the way. But I hope that information will not prove relevant in your case!

Good luck with your consultation.

Alison

6

Thanks everyone. I feel quite calm about it all. It is what it is I guess (might not feel quite so ok about it if it does turn out to be ms tho lol). I was referred March/April and told waiting time would be at least 16 weeks. Should hear something soon.

X