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hello to all from a new user grateful for any advice :-) xx

Hiya, this is the second time I have posted on this forum. I guess the first time I posted I was a bit brief about what brought me here, so this time I thought I should add a bit more about myself. I’m a 42 year old mum of 5 and as of yet am undiagnosed. I had a spell in hospital in July last year with what was thought to be a stroke. All tests done since admission would suggest that it was not a stroke. My symptoms prior to admission began with a strange tingling numbness on the right side of my face, which progressed to complete right sided weakness with my arm and leg numb and tingling with me unable to use them. I regained use of my arm fairly quickly, but it was 2 weeks before i regained full use of my leg. I had an MRI done whilst in hospital and was told that the findings were more in line with MS than stroke and that a small lesion had been found on the right side of my brain. I have a neuro appointment for the end of next month and to be honest it can’t come quick enough.

Looking back over the years I believe I have experienced episodes which could be MS related. Approximately ten years ago I had my first experience of what i now think is nystagmus. My right eye took on a mind of its own and would not co-ordinate with my left eye. This happened on a number of occassions. When I am really tired my eyes take on a mind of thier own. My hubby has told me he has watched my eyes moving in all directions. I also have double vision when tired.

I should add I have pernicious anaemia so symptoms are not down to lack of B12. Before hospital admission I had begun to suffer from numb hands. This has progressed quite significantly. I now wake up at night due to the pain in my hands and arms and find that durning the day the pain can be very restrictive. I can only type on here for a certain amount of time before having to give up. At times it feels like being pricked with broken glass. I suffer more with pain and stiffness in my legs and sometimes pins and needles, and during the day i suffer terribly from restless legs, unable to keep them still at times!

I suffer from terrible overwhelming tiredness which didn’t help when i was at uni a few years back, trying to stay awake during lectures is hard enough at times, lol. I have also had tinnitus for the past two years and for the past few weeks have had reduced hearing in my right ear. My memory is not what it used to be, my hubby said i used to be sharp as a tack but am now on a par with him, lol! I have real difficulty remembering words mid sentence. Also recently diagnosed with low vitamin D.

I was unsure whether or not to post on here again as only got one reply the last time, lol but i guess one is better than none. It would be nice to hear others thoughts as i am really interested to know if anyone else has experienced similar symtoms (it just took me 2 minutes to find the word symptom, lol).

I also kinda wonder if I don’t have MS then why am I feeling so awful, ie do my symtoms tie in with any other neurological conditions?

Believe it or not I am usually a glass half full type person, lol. Think i’m just a wee bit down at the moment, so my heart goes out to all on here who are feeling the same. Big hugs from me to you all! xx

Hi Sammarie, I know exactly where you are coming from, my symptoms started in Aug 2011, and I’m still waiting for a diagnosis, neurologist says he is not looking for anything else, just need the clinical proof. GP suspected stroke, had lots of heart tests, not a stroke. 3 MRI’s and LP and numerous blood tests still not further forward. I also forget what I am saying half way through a sentence, I also forget work colleagues names who I have worked closely with for 12 years!! I also get very tired, my left leg and arm don’t work properly. I have physio next week so hopefully it will help my walk as I walk like I have had an accident!! I also have restless legs in the night and recently woke my husband up in the night as I kicked him, I was stil asleep so knew nothing about it till he told me the next morning. I also get double vision, my left eye doesn’t go all the way to the left when I look left, the opthamologist says I have gained 95% back which is positive. I also get double vision when I look straight down. I also have problems with my typing my right hand works faster than my left hand so the words I type come out mixed up, I have the right letters but in the wrong places. I never had this problem before. I am also a glass half full person but not having any answers does get me down sometimes. Big hug and take care xx

Aww thanks for your reply Shilly, you really made me laugh its great to know i’m not the only one to forget names! I mixed me daughters birthdays up last week and one is in february the other june, got really mad at myself but now see the funny side! Laughed about kicking ur hubby in bed, i think i drive mine mad sitting beside him with my legs going ten to the dozen! Hope to speak soon, xx

Hi sammarie My neuro says he’s amazed I can see straight coz my eyes jerk and wobble around so much !! And just to say hi and welcome Xx

Hi,

I can’t add much as I’m not sure I have MS or if I just have other problems…

But I wanted to say hi as I know the feeling of waiting for a post. :stuck_out_tongue: So just to let you know you’re not alone in your struggles and people do care.

Your husband sounds nice, it’s good to have someone reliable and light hearted around when you’re ill as it can really make things much more managable.

I think the hardest part about illness is getting the right mindset. Being able to know if it can get better, what you can do when you’re better, what you can’t do until you’re better, what you might not be able to do anymore, and also that its OK to be unwell, it’s ok to have blips and it’s probably for the best to try to laugh it off and move on.

I know with me, being only 21 it makes you feel very old when you have health problems like this, and it’s really frustrating compaing yourself to what you’re normally like, to what you’re like now. But you have to just take each day as it comes and think ‘damn I’m doing well for still being able to function with all this rubbish’.

I wish you the best of luck in finding out what’s going on, and getting the support you need.

Just wanted to say thanks to Mrs H for her reply, i guess i’m lucky my eyes only really play up when tired :-), and thanks to qwan also. It is really nice to get replies on here, it means a lot.

Qwan you have a very old head on very young shoulders with lots of sound advice x :slight_smile:

I am very very lucky with my hubby, he’s the most gentle understanding patient man i’ve ever known :slight_smile: I’ve got great kids too, just sometimes feel like I don’t want to be imposing all my troubles on them, and I do like to try and keep positive which is admittedly sometimes hard.

xx

Hi Sammarie, this forum is a great place to come for advice and a chat,it has really helped me. I’m 40,married with 3 kids and I have to say life can be abit of a struggle at times. I first started with symptoms 3years ago,pins and needles throughout the whole right side of my body, really scary,I thought I was having a stroke.The doctor sent me to hospital with a suspected tia (mini stroke) had ct scan, dopla scan of my neck,2 mri scans and bloods,which all came back normal. I was left with a weak feeling in my right side,and kept going dizzy and lightheaded,really exhausted all the time and had to have 6weeks off work.When I saw a neuro he said it was silent migraine,given amitriptylene,which I tried for awhile. Eventually came of meds and was pretty much symptom free for a good while.Sept 2012 and the weakness was back,never really went completely.Anyway again they thought tia,so I was seen at the stroke clinic (different hospital than before) again lots of tests, stroke was ruled out,however he is sending me for a second opinion with a neuro as he doesn’t know what could be causing these symptoms. I now get pain,mostly in right arm and leg,sharp shooting pains, had twitching muscles again mainly right arm and leg. I know there are alot of things that have similiar symptoms but it would just be good to know what you are dealing with,limbo land is rubbish,personally I would rather know what I’m dealing with. Like you I have a very supportive husband and kids,which is a big help. I just find work and juggling home stuff tiring to say the least.

Think that’s about everything,remembering isn’t easy,some asked for my home phone number the other day and I couldn’t for the life off me remember the last part.

Nat x

Thanks Nat the memory part is very frustrating at the time but funny afterwards, and i find it really reassuring that lots of folk on here are experiencing the same thing. I was on the phone to my sons school the other week when the weather was really bad, (i live in a wee village in scotland) as transport needed to know if the road to the village was open, and I completely forgot the name of village! I felt a right plonker, lol! The harder I tried to remember, the further away the chance of me remembering seemed to get…

I totally agree, limboland is not a nice place to be, i’d far rather know what i’m dealing with also…

Samm xx

Hello and welcome. Any questions fire away I’m sure some body here will be able to at least try to answer for you James

Hi and welcome Sammarie,

I missed your first post and for that I’m sorry. I am dx with SPMS and have had it for 30 odd years, but wasn’t dx until 2011, all the previous years things happened to me and nobody ever picked it up. I’m much happier now that I know what has caused all the strange things that happened to me. But to put a lighter note on it, it wasn’t until I started getting spasms that it was really noticed and the main thing was my head would go from side to side all on it’s own. When I saw the neuro’ she told me that I had a NO NO nod…I wanted to laugh thinking to myself thank goodness it wasn’t a YES YES nod otherwise I could have got myself in a lot of bother. Don’t give up, you’ll get there and fingers crossed.

Janet

x

Good morning to all and thank you for your replies James and Janet

There are so many different side effects associated with MS that I knew nothing about so this forum has been a fantastic place for me to learn new things, also its really great to have people to talk to so thank you all again, hugz xx

I had honestly never heard of a NO NO nod, made me laugh re YES YES nod

Have a good day all! xx

Hi Sammarie,

Neither had I until the neuro told me I had one, glad it made you laugh, it did me.

Janet

x

Hi, I know how you feel. I so need to talk with people, I feel really alone and I’m beginning to get depressed. I feel like I must have had a stroke myself , same thing hospital , they thought I had a heart problem. They sent me home after blood tests I could hardly move, they told me they needed the beds. I picked up pretty quickly but the upper body pain was unreal. I got diagnosed with FM but think its Ms. Good luck with your visit. I really hope you get all the help and support. Hope you are feeling better x big hugs x

Hi Sammarie

I’m in limbo too and have gone from being a reasonably intelligent registered nurse to a rambling idiot who couldnt remember how old I am. It’s great now as I can just pick a number. I know what year I was born in so if I really have to I can work it out but Life is less complicated when people give up asking me questions they want intelligent answers to. Life is quite peaceful on my planet. Enjoy it while it lasts.

Hi Min, strangely enough i was a nurse too, lol (rmn). I’m glad life is less complicated for you, i still remember my birthday however the older i get the more i don’t want to remember :slight_smile:

I guess all the training in the world can’t really prepare you for dealing with issues happening to yourself, i like your advice though, i will enjoy the peace while it lasts.

hugs, samm xx

Hi Min, strangely enough i was a nurse too, lol (rmn). I’m glad life is less complicated for you, i still remember my birthday however the older i get the more i don’t want to remember :slight_smile:

I guess all the training in the world can’t really prepare you for dealing with issues happening to yourself, i like your advice though, i will enjoy the peace while it lasts.

hugs, samm xx

Hi Samm

I’m so glad that you admitted to having been a nurse. People think with your history you should know whats wrong but actually it feels unreal. These things happen to other people. You also write symptoms off as wear and tear as nursing is so physical. I’m so glad I stumbled on to this forum as I have learnt more here than any text book. I’m usually too ashamed to mention it.

All the best.

Min

Hi Min, I know what you mean, I feel like I should know more about MS, but I guess up until now I didn’t need to.

I don’t know if its a nurse thing but i’m great at helping other people but not so good at looking after myself, so getting involved in this forum has been a step in the right direction.

samm xx