Would you tell the GP?

[CardyMow]

Background- I was dxd with epilepsy 6 years ago, but presenting in a very unusual way, have not seen a Neuro for 10 months (I'm only allowed to see him yearly, is out of PCT as PCT doesn't have an epileptologist, and is all PCT will pay for).

My seizures are not TC seizures, I have 'drop attacks' with no warning, and odd ones where I slur my speech and am unaware of my surroundings. And 'twitchy muscle' seizures. Am taking 1200mg/day Gabapentin, have tried almost all other meds, none work at all, apart from the gaba, which doesn't stop it completely, just lessens the amount from 20-25 a week to 3-5 a week.

However, for the last year, I have been getting other, odd symptoms. Like about a year ago, I had 'tingly toes' constantly, and felt more tired than usual. Then it all went away (just as I was pondering whether tingly fingers and toes was really worth bothering the GP with...). About 4 months ago, the tinglyness came back, along with bouts of insomnia, and then extreme tiredness to the point of sleeping 14-16 hrs a day. For the last week or so, I have been getting 'achy muscles' in my legs, arms, hands, neck. To the point where it's having me in tears, and even walking to the kitchen is agony, and I'm having to pull myself up the stairs with the banister. Even carrying my handbag is hurting my hand, arms and shoulder, and I honestly don't keep bricks in it...just my key, my mobile and my purse. And now my feet aren't tingly any more, they're numb. Like I don't feel anyone touching them unless they dig their nail in it or something.

I'm scared that it's to do with maybe my epilepsy getting worse, but I don't see how it can affect my muscles or the feeling in my feet. My grip in my hand is a lot weaker as well, I'm finding it hard to open jars and use a tin opener.

TBH the NHS has been so useless at helping me with my epilepsy (losing MRI scan pics, not passing the one they re-did to my epileptologist, not actually SEEING a Neuro for 3 years after my dx etc), that I can't see how they will help me with this. But I can't go on like this, I found myself genuinely wondering earlier today where I could buy a walking stick from. I'm 28 not 78 fgs. But I'm scared that something is going wrong with my meds or my epilepsy and I doubt the doctors can do anything to help me. They haven't really in the last 6 years. But I'm equally scared that if this goes on, that I'll be in too much pain to walk at all. And the dc's NEED me to be able to walk to help them. I suppose I'm scared of what the GP will tell me as well.

Also (sorry if TMI) my bowels have become...err...sluggish...I'm not going as frqeuntly as normal, it's every 2-3 days now instead of every day. Just seems like my whole body is giving up on me...

loudlass - get thee to gp. i'm not familiar with side effects of epilepsy meds, but i know sometimes they do have some odd issues - you do need to know whether your epilepsy is causing your symptoms or if it is something else.

remember, the 'something else' might be easily treatable - it doesn't have to be anything more sinister, so you may be frightening yourself about nothing.

i think that sometimes nerve damage caused by meds is not reversible, so just in case it is this, you do need to get yourself back and get your neuro appointment bumped. if you don't want to see your gp to do this, it might be worth speaking to your neuro's secretary, and asking for an opinion as to whether you need an urgent appointment - it's a tactic i've used successfully on dd2's behalf. don't worry about your pct - whilst your epilepsy is stable, a 12 monthly appt is fine - you have additional symptoms, and you need to be seen now. don't worry about their budget, they are obliged to refer you or bump your appointment if necessary.

only natural to be worried, but you know you do need to be seen. phone in the morning.

You need to see your doctor asap, like today if possible. They will help you.

I'm not a doctor, so I can't tell you if it's related to your epilepsy or not.

Many of your symptoms seem to be consistent with Multiple sclerosis, but as I said, I'm not a doctor, and you need to see someone who is.

Please please make the appointment today.

Fuck fuck fuckity fuck arctic fox, that's what I am most afraid of, my ex-H's mum commited suicide after living with ms for years. To hear someone else say what I'm most worried about is...err...more worrisome...But why would it come and go like it is? For the year before my ex-H's mum did that, she was like it all the time (I only knew her for a year). In a wheelchair, and she ended up being tube fed because she couldn't swallow very well. I think I may have to grudgingly accept I may well need to see the GP...and nerve damage from gabapentin is very unlikely as it is often used to TREAT nerve damage...

Sorry- I didn't mean to freak you out.

My godmother has MS (has had it since she was 30- she is now in her 50's). It has been very well controlled and she is not in a wheelchair (uses a stick but only last 3 years). Until 5 years ago, you would not have noticed she had it. By contrast, it sounds as though your husband's mum had a pretty aggressive case.

Also, (I know I'm not helping here) in the early stages it does "come and go".

You really need to see your GP.Not seeing him wont make it go away and it might be something completely different.

Have arranged MIL to look after the dc's on Monday so DP can come to the GP with me. I know it might be something different, but TBH it's what I was worried of at first 6 years ago, my 2 MRI's have never been properly checked, so it may well have been missed. I know it might not be ms, but it has been playing on my mind for a few weeks. If it does 'come and go', why is it that this time round, it's been getting worse and worse for 4 months, the constant exhaustion and the tinglyness and now the numbness, it just seems to have gone further than ever before. When I was first dxd with epilepsy, it was the exhaustion then that was the most baffling thing, but it passed in about 2 months, and other than the 'non-typical' seizures, and the exhaustion, there were no other bits. Now on top of everything else, I seem to have had a constant cold/chest infection/ear infection (delete as applicable lol) non-stop for the last 4 months. As if I've just not got the strength or energy to fight anything off. I've tried taking multivitamins, not helping. My DP had to help me come down the stairs this morning. . All I seem able to do for the last couple of days is get up, and sit in the chair. I'm getting frustrated because I don't even have the energy to stand at the sink and wash up. I'm finding it is hurting me to type today.

I was being investigated for MS and it turned out to be b12 deficiency.I have injections now and its a huge improvement.I had tingly toes and also sleepiness NOT tired as such but literally drug like drowsy.GP noticed a change in teh size of my red blood cells and asked for further tests for b12 as I wasn't anaemic in teh traditional sense so it got missed.I had it for 6 yrs appro=x and so a tiny bit of one toe is permanently damaged but all other symptoms hugely better esp the tiredness and aches

You've done the right thing, you know you have. While waiting to find out what is wrong is worrying, knowing will lessen the concern. Once you know what's wrong, you can take action.
Good luck.

bump for anyone else's ideas until monday when I can see the GP.

My friend had these type of symptons and it was vit B12 deficiency too.

And yes tell your DR.

There are different forms of MS. I have Relapsing Remitting MS, symptoms come and go, but even then can leave residual symptoms, for example I walk with a stick.

If it is RRMS (big 'if'), there are meds you can take to help slow down any progression, and to manage the symptoms, it's not neccessarily all dire news, and it varies massively from person to person.

There are lots of other things it could be, so go to the docs for peace of mind, if nothing else.

Good luck

Good luck talking with your GP on Monday (for what it is worth, which is not much as I am not a medic, gabapentin can cause numbness, muscle pain, tiredness, amongst the many side effects).