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Hi again and sad to ask for support

Hello again.

I have been reading all the posts and mentally supporting everyone but unable to do so with written words because I don't feel qualified to understand any of this.

It takes me an age to type anything at the moment because my hands are not working as well as they should be but today I would like to ask a question.

If my arms have been the biggest problem for me (I have no diagnosis of anything other than probable MS from only the GP and physio) then why on earth would my leg suddenly have enough pins and needles to stop me being able to walk without dragging it around or having to crawl? I have children and it is Christmas! Will it come back and if so when? Some days are way better than others and some days no one other than myself can notice that I cannot do physical things. My daughter is wanting to buy me Zumba classes for Christmas for goodness sake....walking and opening cupboard doors is a massive workout!

If I have put this in the wrong place then sorry and thanks to you lovely people. Karen (rizzo) you are an absolute star and I hope you know that.

Much love to you all and I hope you have the most wonderful Christmas and New Year

Jacqui

Hi Jaqcui - sorry to hear that you're feeling so grim scared2

Everyone is welcome here and we're all experts in the sense that we each know what the other is going through. Sometimes we just need a few kind words and a listening ear, other times we're looking for someone to try and help us understand what's going on. Either way someone will always be around to offer support.

You mentioned that you have a 'probable ms' diagnosis from your GP and physio but has your GP referred you to a neurologist? Only a neurologist can make a diagnosis and this is after tests to rule out other possible causes - of which there are many - some of which aren't serious.  

In laymens terms ms is damage to the central nervous system. It's thought that the body attacks itself, damaging & stripping the myelin (which is what protects the nerves). When this happens messages which the brain tries to send around the body then become distorted and mixed up - hence the mixture of different sensory pain and feelings that we get - any part of the body can be affected.

Other factors, like whether we're overdoing things, stress, anxiety and the weather can also make a huge difference to how we feel as well. For example, I love the summer and try to get as much sun as possible - but the humidity doesn't like me. It completely wipes me out, my fatigue is far worse and it feels like my body is made out of concrete, particularly my legs. But equally the cold can have a similar effect. Much as I don't like to admit it, I'm the worlds worst for over doing things too and of course afterwards I suffer the consequences crying1and wished that I'd listened to my body... 

It's a bit of a minefield and very much a learning curve. All that said, if you do have ms, although you may not think it when you receive the dx, but there are far worse illnesses to have. MS is not terminal and life can still be a happy one, but it is a case of adjusting to the news and learning what your limitations are, both of which can take time to get the head around.

If it were me then I'd definitely get that all important referral to see a neurologist.

I hope that you start to feel better soon Jacqui and that you can enjoy the festivities despite how rotten you're feeling right now. Remember where we are if you need us ...

Debbie xx

 

 

 

 

  

Hi Jacqui (and thanks :-)).

If it is MS, then it sounds like you might be having another attack. As Debbie says, only a neuro can diagnose MS, so you really need to see one.

MS can affect literally anywhere and it’s pretty normal for different attacks to affect different parts of the body. That’s why the symptoms tend to mount up over the years.

Of course, this new thing could have a different explanation so best to see your GP - to check it’s not something non-neurological and to get a referral organised if needed.

With any luck those Zumba lessons might be possible soon - you never know!

Btw, there is some pretty nifty voice recognition software available these days - you talk, it types! The one I know is Dragon Naturally Speaking, but there are probably others too.

Merry Christmas and Happy Hogmanay to you too :slight_smile:

Karen x

Oh thank you soo much Debbie and Karen and sorry to be such a moaner!

Debbie, I have been referred to the neurologist and am seeing him in January but here we have some weird system whereby the neurologist has an appointment NOT to see the patient but merely to read all the writings, notes etc before he decides whether or not to see the patient. Very strange indeed. It seems after reading my notes I am worthy of an urgent appointment and also without even seeing me he has booked a brain MRI rather than just one to do with my arms or lower back as has been the case before.

I spoke to the GP this morning as I couldnt get an appointment and he said to increase the gabapantin and as I can still walk, albeit rather weirdly, to 'see how things progress'. The hard thing is for me that my leg is now noticeable whereas I can hide pain to a certain extent. I have autistic children (young adults really) who would not understand and without any confirmed diagnosis I don't want to explain.

Karen, I have used Dragon Speaking Softly in the past as my hands and arms did this once when I was completing my PhD but I was told it was  a mix of carpel tunnel and RSI. I do wonder now. The biggest problem I had was that I kept 'typing' J will you please stop it' in between everything else as my kids are always around! :-)


I really do need to get my act together and learn because why in the space of months would I be having another attack, if indeed I am not just stressed/a hypochondriac or whatever the other 'reasons' for having pins and needles in the leg enough to not walk?

I am having a new carpet fitted today and there is just me, my 2 year old and my autistic 18 and 15 year old so I am going to have to do some real girly eyelash fluttering to get the fitters to help me :-)

I hope everyone is well and healthy in spirit and as good in their body as they can be.

love and sunshine to you all and bless you

Jacqui

"The biggest problem I had was that I kept 'typing' J will you please stop it' in between everything else as my kids are always around! :-)"

LMAO!!!

 

It's possible to have a lot of relapses one after the other if it's MS. It's also possible that that rather frantic period is followed up with years of nothing happening at all. It's nothing if not unpredictable, MS.

 

It's great that you're seeing the neuro. Here's hoping that he can work out what's going on.

 

Good luck with the carpet fitters :-)

 

Karen x

 

 

hi jacqui

im sorry that you are feeling rubbish today (understatement i know) but its really good that you can let off steam here, we are all here to offer support and i hope that the replies help in some way.

 

 

its good  you are getting somewhere though with a new mri and maybe then you will get a diagnosis and access to the meds that may help you.

whenever you feel in need of support though do come on here again and at least you will get some reassurance, and thats very important.

i know i need it sometimes too, after all its what we're here for.  i know that if im stressed i can just offload on here and that makes it easier.

please dont ever think you are a hypochondriac because you're most definately not. you have so much to deal with right now and i dont know if i would be strong enough mentally to deal with it.

its hard to make sense of all the symptoms that we have because there is no logic to it, i gave up trying to understand it and now just accept that there are strange things that can happen.

sending you lots of best wishes

mandy xxx

I hope you get answers soon. It does sound like you're having a relapse if it is M.S. The closest I was to a diagnosis was probable M.S (given by neurologist) so I know how frustrating it is not knowing and being afraid of what it could be. It's difficult having all these weird sensations without a reason. With any luck something will show up when you go through the various tests so you won't be stuck in limbo too long. We're all here for moral support so offload any time.

Let us know how it goes with the neurologist.

Emma x

Hi again Jacqui

Good news that you're seeing a neuro....what an odd process they have, reading the notes etc before agreeing to an appt! January is only round the corner, hopefully the mri and your appt with the main man will shed a little light on things for you. All things dangly crossed that the increase in gapabentin will make a difference too. Good pain management helps tremendously.

Would a virtual keyboard help you in terms of typing? This would involve using the mouse to type rather than your fingies.

How did the arrival of the new carpet go? Did your feminine powers have those carpet fitters working like the clappers..?..lol... I do hope so!

As for your thoughts on being a hyponchondriac....Oh I don't think so! Neither are you a moanng minie, so please push those thoughts to the back of your mind.

Festive wishes & ((((hugs)))) coming your way Jacqui - have a good one happy2

Debbie xx

 

 

Oh thank you SO much everyone. What a wonderful bunch of people are on here. My mother in law has MS so I feel even sillier having all this weird stuff going on. Each time something has happened it has been dismissed as one of those odd things. For me, the biggest problem right now (apart from having a duff leg and arms) is my bladder. I had an appointment to see a urologist and stupidly missed it as I read the date wrongly.

I hope everyone is prepared for Christmas and manages to enjoy it all rather than it being a stresser. I have 8 kids and am cooking for 16 here so with this ere body of mine being silly, it should be fun.

The carpet fitters were lovely and moved things for me. One of them was 81 years old and only had 2 teeth!  My 2 year old found him fascinating :-)

My daughters friend came round and I appealed to his machoness and he moved the furniture back in and wired the tv etc back up again too. I rewarded him with rum :-)

have a lovely time everyone and I do hope you stay well and healthy and happy.

Lots of love and thank you SO much for your support. Regardless of the diagnosis, I am glad that I dared myself to talk to you all as I have learned a lot and am most grateful for everyone here

Take care

Jacqui