Hi, I was wondering if anyone else had symptoms like mine if you could let me know please. I’m at the end of my tether and just want advice and help. I only got my dx in December after waiting 6 months for the results of my MRI and started Rebif at the end of January. I was put on 10mg Amitryptaline twice a day by the GP and when my neurologist saw it in March he changed it to 100mg Amantadine twice a day. I started a year ago with a numbness and tingling like an electric shock on the left side of my face and a feeling like you feel jumping into a pool without holding your nose, this affected my right hand and sometimes my right leg, feeling drunk, bad co-ordination and balance and feeling very tired. This happened for a few seconds every 10 mins or so. I counted over 90 one day and that scared me. (I call them my do’s) During the time from Feb - Dec I had two MRI scans (One with dye in June) but my do’s were right down to about 3 a week by the time I got my dx. About 2 weeks after I started Rebif my do’s increased until now where they are non-stop. I was put on Pregabalin as I now had pain. All the symptoms had returned but now I can’t walk in a straight line, I bang into things, drop things from my right hand and feel drunk 90% of the time. The MS Nurse told me to come off the Amantadine which I did over a week ago and there has been no difference. I only started the Pregabalin after the symptoms got so bad - so now I’m wondering if this is my lot and it is always going to be like this? My neurologist reckoned it wasn’t a relapse or the Rebif causing my symptoms, just that they were a continuation of what I had! How can it be when I was down to 3 a week?? Can anyone shed any light please? I see another neurologist in June but he is probably a friend of the one that keeps dimissing my symptoms the whole one time I’ve seen him since my dx. I’ve lost all confidence in the neurology dept.
Sorry can’t offer any advise, but hope you get it sorted. I think a lot with the MS care you get is a bit like a lottery, my experience has only been really good with my MS nurse and also the neuro doctor. Good luck 
I can’t help much but these are my thoughts from what you have posted.
It is highly likely you are still in recovery from your last relapse (i think this is what your neuro is thinking). Relapses vary in recovery time. He is thinking your symptoms are continuing so you are not in remission yet. It sounds like he does not think the symptoms you have are a new relapse but the same one.
When i have recovery - i also have times where i can see improvement - and then get worse again before the recovery becomes constant.
The electric shock type of pain in your head could be either a type of migraine/neuropathic pain/ or trigeminal neuralgia(TN). The pregabalin should help neuropathic pain but if not your dose needs to be increased. TN is usually treated with the drug Tegretol. This needs to be investigated by the neuro so you have the right medication for the right problem.
You are pretty new to the rebif so do not think it is not working for you. It takes a while to get it into your system and start to work. If you think the rebif has made you feel worse then this also needs to be discussed with the neuro to see if rebif is the right drug for you.
I have been on rebif 9 years. It takes a little getting used to at first.
Please do not think ‘this is my lot’ because as you come out of this present relapse and the rebif hopefully starts working for you - you may be totally different to what you are now. Try to be patient as you recover from your relapse as life can be good again. Getting the right medication for the symptoms can make a huge difference as you stabilise from relapse.
Try to keep positive about seeing a different neuro. This one may be more experienced in dealing with ms.
I hope i have helped in some way.
Best wishes
Teresa.x
What the hell!! this is all MS what is wrong with these neuro’s.
It’s not Rebif thats causing this. Everything you have mentioned I have had. Hopefully over time rebif will calm alot of it down.
Electric tingling, numbness on a side of face, fatigue, drunkeness, light headed, (mild vertigo or extreme virtigo) weak left leg, arm and hand in my case.
When I worked in a open plan office I kept walking into desks, If I was walking with the Ex at the time I would walk into her,
I hard to think really hard to walk into a straight line and as soon as my mind would wonder I would head to the left on the next step.
I use to feel my brain, stick a 9v battery on your tongue feeling but on your brain is what I had. droppong things and being clumsy and walking into things is all MS.
When I use to smoke, fag in right hand so I use my left hand to get a cup out of cupboard and is slowly tilted and fell out of my hand lol. I knew it was going to happen but I reactions to everything was realy slow.
I would not say it’s a relapse as with me it lasted for ages till it all went. But then my neuro said I was RRMS highly active and for me its a long relapse and I needed to go on something stronger.
I would say there are neruos and neuros who know MS.
Oh also at Charing cross they do a memory test and mine sucked apparently short term memory sucks with MS and this is also common though does get better with treatments.
If your in London look up Neuro at Charing Cross Hospital Surname starting with M.
Oh I would add for feeling drunk and light headed for me Gabapentin or Pregabalin made that worse. Everyone said you have
to take it everyday and over time the light headedness would go but I could not put up with it also numbness in hands and feet was worse.
It was great for the pain so soon as that went ( a week later I stopped taking it) when it flares up I take it for a week.
Lucky for me I’m never in constant pain.
Oh I would also add add I have had a few Jack Daniels and Coke hence typos etc,
least I did not swear and say shit
Rebif takes a while to work and kick in.
Cheers and good luck if you have the same MS as me it does fade away alot of what you mention.
All I can add to the above is that if your balance is causing you problems, it may be worth asking for a referral to your local ‘balance clinic’ (neuro-otology). You don’t say whether you’ve seen your MS nurse yet, but it you haven’t been referred, it may be worth giving them a call as you can usually self-refer.
Mags