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New to all this

Hi everybody, I haven’t yet been diagnosed with MS although, I am waiting to be seen by a neurologist in the next few weeks. In the meantime I feel like I am going mad and just need to write down something to get it off my chest, so I apologise to you all now if I go on a bit. I have read so much on the Internet about signs and symptoms since two docs said they were concerned that my symptoms are pointing to MS. I feel a bit isolated at the moment as I am finding some symptoms very debilitating and without a diagnosis I am scared people will think I am swinging the lead. I have had a rough ride over the last 18 months before all this, with surgeries on my back due to chord compression caused by a prolapsed disc, then a repeat of the same op, due to the chord prolapsing further, again causing chord compression just six weeks after the first op. Since then I have been left with severe left leg pain, back pain and numbness and pins and needles in both legs and feet. I have had to give up work as an Operating Theatre Sister, and am currently at home with three young children, 9, 3 and 2. Although I have adapted my lifestyle to accommodate my back problems so as not to affect the kids too badly, what has since happened with all these new symptoms has knocked me sideways. I started in January with what I just put down to neuralgia in my face, right side, the next day it went numb. It spread down the back of my neck, I had weakness to my left arm, then as the weeks progressed my back on the right went numb too. I had a few is odes after the first symptoms whereby I would get stressed out Nd the numbness and weakness went worse. It also affected my speech, I just could not make the words come out. I also had tremors. I went to my gp, who said he didn’t think it was MS despite my neurosurgical consultant who looked after me for my back saying otherwise and referring me to a neurologist and sending me for an MRI. The brain MRI came back normal, which was a big phew! Moment. Then last week the fatigue started first, Thursday I started with dizzy episodes, by Saturday I was in bed numb all down my right side, lost all power in my right side. Tremors and weakness such that I could not hold a pen to write. My right ear ringing. Each day I feel a bit better, but today my husband has had to go to work so I am feeling pretty scared right now as to what the day holds. I just don’t know what to think, and wonder of anyone else has had any similar experiences to mine. Thanks for ‘listening’ xxx

Hi Sammy

My heart goes out to you. I have been down a similar but easier road. I’m also a nurse, had surgery for cord compression then told I probably have ms. I see the neurologist this week, and have mixed emotions about it. Not having an obvious injury does make it difficult to bear as people treat you like a hypochondriac but I try to imagine how they’d cope in my shoes. To be a theatre nurse you must have a strong character and although it will be difficult at first I’m sure you will find a routine that’ll suit you and your children. Can you maybe ask a friend or family member to have them for an hour or two in the afternoon to allow you to have a rest? That was a huge help for me. Take help people offer, they might appreciate being able to assist but be unsure about what to do and scared to upset you by making you feel you are not doing enough or neglecting either your family or home.

Things will improve I’m sure. Take care.

Min x

Hi Min, Thanks for your message, just those few words mean so much. I think I am feeling sorry for myself having had such a bad week and still no end in sight. The intense tiredness, dizziness and right sided numbness and weakness and the tremors. Even the slightest effort to even sort through washing is wiping me out, the house is a tip and the kids still in pj’s. I have a good friend who encourages me to call on her when I need her, I try not to, but I think I am going to have to take your advice. My youngest has just gone down for a sleep, he is a whirling dervish so it is a welcome break this morning. So will sit down for a while and try to rest. Thankyou again, I am sure you are right, once this episode has passed I will make the most of feeling well again Sam xxx

Hi Sam, and welcome to the forum :slight_smile:

It sounds like you have a lot on your plate :frowning:

There are so many things that might be causing your symptoms and the only way to know for sure what’s going on is to push for all the necessary tests and hope that your neuro will work it out sooner rather than later.

If I were you, I would ask about a spinal MRI scan and a more detailed scan of your brain stem because it sounds like your symptoms might be related. (I’m not a neuro though.)

Do ask your GP for help with your symptoms, rest as much as you can and definitely use whatever help you’re offered. There’s no pushing through this sort of thing :frowning:

I hope you get some answers soon.

Karen x

Thanks karen, I think once I get to actually see someone I will feel better, just waiting and not knowing is such limbo. My gp has been so supportive over the problems with my back, and when I went to see her last week for some help, she looked like she wanted to burst into tears for me. I will take your advice regarding the brainstem and spine, as the neurosurgeon definitely felt there maybe some brainstem problem when he referred me to the neurologist. I will try to remain positive, which is easier on the good days. Meanwhile the house is a pigsty but I am so drained after a bad week, that it will have to wait lol Sam xxx

Sam… the housework police will not come and arrest you… promise!

Sometimes you just have to lower your standards… and as Quentin Crisp once said… ‘after the third year the dust doesn’t get any worse’…

Pat x

Hahahahahaha, I think it’s just the fear of being judged, and being seen as a lazy so and so that does nothing and who doesn’t look like there is anything wrong some days. I am going to have to change my attitudes to a lot of things by the looks of it or will just make mysel ill. I keep walking into the kitchen, moving a few pots and then walking back out. Hitting another low point, time for more food I think lol x

Hi hun.

Please dont feel bad about not being able to run the house, look after the family and hold down a very serious job, the way you used to. Anyone who does all that sure is Superwoman.

we know the world is full of those kinds of women…the unsung heroines!

With all those back surgeries, it will need careful monitoring, incase it is the cause of your newer problems and not MS.

Anyway, it sounds like the right avenues are going to be explored and that is good.

ease up on yourself and take any offers of help gladly.

I`m just sickened for you that this is all happening when you have a young family.

I spent many years in limbo, and then some with a PPMS label…only last year I was finally told I defo dont have MS, but a similar condition…equally incurable and debilitating.

luv Pollx

Hi Poll, Thanks for the kind words, I am so sorry things haven’t been very good for you. The one thing I am glad of, is regardless of what the diagnosis might be, I am so glad I logged on to here today,. You really feel that when you get all these weird symptoms and lose the ability to hold a pen and write, cut up food and at times even get a word out, that you are going mad. Having all your kind words nd support makes me feel that whatever the doc tells me, I have somewhere to go, and people who understand. Thankyou again, I sincerely hope you have some relief. Love Sam xx

Sammy you’re being really hard on yourself. My heart aches as you were obviously a super mum, nurse, wife and housekeeper before this hit you. As long as the children are fed, watered and breathing, there is nothing lying around that can harm them then there’s nothing to worry about. Have a pyjama day, put cartoons on the telly and rest. Find something easy for tea e.g. pasta and you’ll all survive. The housework will still be there tomorrow our the day after. Spread it out over a week if you have to, Rally the kids round to help, give them pocket money for it, or a treat, believe me it works. This is when bribery is a Very useful tool.

All the best.

Min xx

Thanks, you are right! I will do as you say, and chill. Thankyou so much xxx

Sam, I’m completely flumuxed by this whole MS palava as you may have seen already. All I know is that all this started up for me at the start of this year when I felt like I was having a nervous breakdown I was so stressed out and I place blame on this. I may be wrong but I know I’ve had to prioritise since for my sanity and for my health. I have a 6 year old son and a 9 month old baby and a job to contend with.

I guess all I’m saying is that I don’t think the stress is doing us any good, not to mention the added stress/pressure we give ourselves.

I think stress is a major factor, I too was having really major stressful situations at the same time as my symptoms started, loads of red tape to contend with, people not helping, then bang! Right out of the blue, this. I think you are totally right, we need to stop letting stress have such an effect. The only problem is, for us both, with young families etc, and such a massive life changing possible illness, this too is causing stress. I keep telling myself, this time next year, when hopefully I have got to grips with all these different problems and learned how to change my lifestyle (yet again) to accommodate them I will be far less stressed and go with the flow. I really feel for you with a nine month old, and hope to god you have got support around you to help you out. Sending you massive hugs Hun xxx

You sound a bit like me in that you are used to gritting your teeth and “getting on with it” and then this goes and happens!

I’m now trying to teach myself to put off what isn’t important. I’m so used to trying to please everyone else and have such an overly busy and stressful job although my boss seems to realise this at the moment so is going easy on me for the first time in 10 years!

I also think not feeling yourself just adds to stress levels.

I look forward to following your progress and hope that things improve drastically. I keep saying to myself that I just want to go back to worrying about anti-aging creams and diets! x

You sound a bit like me in that you are used to gritting your teeth and “getting on with it” and then this goes and happens!

I’m now trying to teach myself to put off what isn’t important. I’m so used to trying to please everyone else and have such an overly busy and stressful job although my boss seems to realise this at the moment so is going easy on me for the first time in 10 years!

I also think not feeling yourself just adds to stress levels.

I look forward to following your progress and hope that things improve drastically. I keep saying to myself that I just want to go back to worrying about anti-aging creams and diets! x

Yep, here’s to l’oreal, cos we are definitely worth it lol. Will keep you posted, and thanks xx

Yep, here’s to l’oreal, cos we are definitely worth it lol. Will keep you posted, and thanks xx

Yep, here’s to l’oreal, cos we are definitely worth it lol. Will keep you posted, and thanks xx