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Scared and confused

Hi, I’m very new here but already have found this forum very helpful.

I had not been feeling right for a year. My balance was off and energy levels were really low. Long story short I was sent for an MRI in May which showed 4 blotches on my brain. Since then I have had a Lumbar puncture which showed antibodies in my Cerebal spinal fluid and an VEP test which I am still waiting on the results of.

My neurologist will not confirm it is MS although he has said that in all probability it is. He has put me oon Gabapentin to try and help with my symptoms ( legs are sore at night, and feet ache) but now I seem to have what feels like pins and needles in my face - very weird sensation - Does anyone know if this could be down to the medication? Also I’ve been referred for another MRI this Friday. I’m happy that all these tests are done but the lack of knowing is torture.

I had my secong we girl 6 weeks and she is just a little bundle of joy but I worry about what the future holds. My wife is so so strong its incredible but I worry so much about what a toll this whole process is taking on her. I do my best to be upbeat and strong as well but its hard sometimes when your head won’t stop spinning, your legs feel like you’ve ran a marathon and you keep walking into things because your balance is all off… Bit of a pisser all round :slight_smile:

Anyway, sorry this is a bit of a ramble… Just wanted to vent a little bit I suppose.

G :slight_smile:

Hi G and welcome to the site

I don’t think that gabapentin would cause pins & needles because it is commonly prescribed to reduce things like that (i.e. neuropathic pain & sensory disruption), but if it is a side effect it should wear off as your body gets used to the new med. Do keep a note of when it started and how it changes - it is useful info for your neuro - and if it gets worse you should speak to your GP or neuro - you may need to change meds and/or dosage.

The waiting must be very scary, but it sounds like your neuro is being very thorough which is a good thing. It also sounds like he will have plenty of information with which to come to a decision soon, so try and hang in there!

MS is abolutely not the end of the world. There are great meds, therapy, people, organisations and equipment to help MSers these days. On average we live only a few years less than we would have done without MS so you will be there for your kids through all the important (and unimportant!) bits of their lives. Yes, you may well have some difficult challenges along the way, but you can still live a long, happy and fulfilled live. MS is NOT the end of the world.

Karen x

Thanks J and Karen,

Think I just needed a big moan :slight_smile: Don’t we all some times?

My biggest worry is that I have had these symptoms for nearly a year and if ayhing they are getting worse!!!

Anyway - Chin up and Stiff upper lip etc

Thanks again.

G :slight_smile:

Hi G and welcome to the site

I just wanted to say and to reiterate what Jo and Karen have said really.

We all react differently to meds - just like ms symptoms can vary for us all too. If the pins & needles in your face continues & you’re really worried then speak with your neuro or GP. There are other meds available - sometimes we need to try a couple before finding the right one. I did have a quick look at side effects for gabapentin and I couldn’t see it on the list but that doesn’t mean that’s not what it is, so see how you go is what I would suggest.

It’s soul destroying when we don’t have the answers but it sounds like you have a proactive neurologist which is a major plus. Try to think of each test and scan as another step closed to finding out exactly what’s going on - I think it’s the only way otherwise we get all bent out of shape before we realise it…I whipped myself up into a right ole blue funk when I was going through the diagnostic stage and it’s only thanks to everyone here that I kept my sanity…I think…lol…

It’s a tough call trying to keep everything in perspective at the best of times let alone when something like this comes up. It sounds like you’re a strong person by your very nature so don’t beat yourself up when you’re having a rough time of it. We can’t always be strong and chirpy. It kinda feels that life has been put on hold until it comes along, at least that’s how I felt. Try not to worry too much about the future - it’s not something that any of us have that much control over anyway. Enjoy your life because as and when a diagnosis comes along you’ll deal with it just the same.

Good luck with the mri and let us know how you get on when you get a minute

Debbie xx

p.s. congrats on the new addition to your family

I think that’s one of the other major worries pixie…

My wife summed it up perfectely when she said (And she’s not one to swear)

“If it isn’t MS then what the F**k is that on your brain” :slight_smile: I have to say that did

bring a smile to my face.

G

Laughter is the greatest healer!

Debbie xx

Thanks Debbie - Wise words I think

Also - “right ole blue funk” BRILLIANT! What a fabulous turn of phrase LOL

G :slight_smile:

I’m sorry to hear that pixie… Why don’t you try moving GP’s? From what I have gleaned from reading posts here my neurologist has been pretty pro active and I have to say my GP is brilliant and is also a huge support for me. I have been put on Gabapentin to help with the pains in my legs - early days but fingers crossed things will improve.

Take care and don’t accept being brushed off by your doc. Goelsewhere if need be.

G

Fingers crossed for you Pixie. Hopefully new doc will be more helpfull :slight_smile:

Hi Pixie

Hopefully seeing another GP will speed up the process of you seeing the neurologist. GP’s are just that - General Practitioners - not specialists. Good luck, I hope you get somewhere.

Debbie xx

Oh pixie - don’t know what happened there but your email address popped up when I posted that last post!

Debbie xx

Hi again G

…glad it made you chuckle …it’s the little things in life right?!..lol…I may have to wrack my brains for some more now…

Debbie xx

hi g

just wanted to say welcome

this is a great place for lots of advice and support and you can just have a good moan too if that makes you feel better.

this site has been a massive help for me and its great to know that are people who just like you and do actually understand how it feels.

best wishes

mandy

Thanks everyone… What can I say but its good to know we are not alone. On that note a wee joke I heard today :

My Ex is spreading false rumors about me being schizophrenic . . . . . . . Well, 3 can play at that game !!!

sometimes i wake up grumpy, other times i just leave him in bed