So unhappy and scared, feel like I'm losing it :(

I cant even begin to describe how i feel other than its getting so bad I feel like im gonna have a breakdown. for the 2nd time, my symptoms have gone haywire during " that time of the month", i barely slept last night i was in and out of the loo,the tremors in my legs were going mad and when they stopped my legs felt like they were on fire, presumably due to the muscle burn that happens with tremors i don’t know. even leading up to last night, my twitches and tremors were getting worse, the pain is STILL here despite the vitamin d, my diapraghm is STILL playing up when i even get the tiniest bit stressed or even when it feels like it. the saving grace in it all is that my swallowing issues have not been so bad. but my so called friends are now thinking me stupid saying " it cant be MS, you’re too young", and i wanna say, well i don’t want it to be MS, and didnt you know it can strike at any age! november is creeping up on me and i have no idea what im gonna say to the doctor. im trying to tell mum about symptoms as and when they come on, even she cant deny that 2 times in a row od extreme tremor at that time of the month, is not normal, and with that, i am now terrified of it coming round and today has again been a complete emotional meltdown, i have had no energy whatsoever, at work earlier i was so frustrated and angry i wanted to smash up the room i was in. i feel totally out of control but i keep telling myself that its just made worse by the stress of the situation, but i have no-one to talk to apart from on here who even seems to care and while i love you guys, i wish my friends off the forum would care a bit, but they don’t. and the ones that do care, have serious enough problems of their own, i just want it all to go away :frowning:

I can sympathise with you (although I don’t have an MS diagnosis, just going through the mill of tests), but my periods always flatten me and I am wiped out for a good few days. I have endometriosis, so my periods went haywire a couple of years ago, I had a period that lasted 4 months and I was so ill! Thankfully now I’m on treatments to stop or at least reduce my periods. I just read your old post about ‘that time of the month’ and Karen (Rizzo) talks about the beneficial effect of oestrogen on MS… all my treatments for endometriosis work against oestrogen in my system, and I was actually put through a temporary chemical menopause for 6 months starting about 3 months before my left leg went numb (!). Wonder if there was a link, and if there is a link between (some) MS and menopause, because I get the feeling a lot of ladies get diagnosed around their menopause.

Also, I get your feelings about friends (and family). I try not to say anything to them, and if anything does get mentioned, I play it down, because I know I’ll get that response ‘don’t be silly, you won’t have MS’. My boyfriend is worst, he thinks I shouldn’t be thinking about it at all until the possible moment the neurologist tells me ‘YOU HAVE MS’. I think people are trying to protect me, I’m not sure it does though. I’m not obsessed with it, but I’m the sort of person who craves knowledge and likes to have a grasp of what MAY lie ahead so I’m prepared IF it happens. And if it’s not MS, then I have a whole new bank of ‘useless’ information about MS!

Like you, I find this forum is great just to express how you feel and feel like you can. I know it’s not the same as real friends, but it helps so much.

Rach xx

Hi Jules So sorry to hear you sounding so low. You know sometimes friends can think they are helping by suggesting it is not something like ms. What they don’t always realise is that you actually just want them to recognise it could be and give you the support you need, until you know what is actually causing all your symptoms. At the end of the day your symptoms don’t change whatever label they get, if that makes sense. When I was waiting the results of my mri’s, my hubby would keep saying, try and be positive, it might not be ms and sometimes I just wanted him to yes it could be, because that was one of the things that was at the back of my mind. I was hoping for that more than one of the other options i had me down for based on my symptoms at the time. My nan had a brain tumour and a drama on tv the night I had my MRI, had someone with the same symptoms as me with one so I was really scared, especially as I was referred for emergency MRI and my gp was reluctant to give a clue to what she thought it might be. So saying he didn’t think it was, sent me off thinking something worse. So do you have someone you could talk to to explain how you are feeling? They might just be trying to keep you positive, when you really just want someone to believe that could be one of the possibilities. Hopefully it is not but when things are effecting you so much it can end up feeling like they don’t think it is as bad as it is. With the doctor appointment keep a list of all your symptoms but try and keep it to the point. When new symptoms have appeared and how long have they stayed for etc. It is so easy to forget important bits of information without it. November will come round sooner than you think. Can’t believe summer has come and gone already. I hope this helps. I know it is not the same as talking to friends, and when I read things back they don’t always sound like I want them to but sending hugs to help. Mish x

Julie, I’ve gone through the menopause now. When I had periods, especially the few days before my symptoms increased and I could hardly walk due to the stiffness and spasms in my legs.

It can be due to an increase in your core body temperature. Other people I knew suggested taking paracetamol and I found this did help. You could also be overheating during the night. I slept in lighter clothes and had a ceiling fan fitted in the bedroom.

You do need to speak to someone about the way you are feeling. You’re penting up your emotions which is leading to frustration. Can’t you talk to your Mum more?

My daughter has various neuro symptoms, including tremors, very stiff or weak legs, fatigue etc. As a Mum it worries me but I tend to try and play the symptoms down for her. Emotionally I’m always there for her. If she needs to talk, cry whatever I’m always there to listen to her. I can tell when something is wrong and often approach her first.

In November do a list with your most troublesome, frequent symptoms at the top. Also put what you’ve done to try and help the symptoms or what you have found helps.

We’ve all been where you are so we do understand.

Jacqui x

Hiya Jules

Sorry I didnt get back to you last night.

I think you need to book an appt with your gp and tell him/her the way you are feeling highlighting that its because of the consequences of your symptoms and not anxiety.

You may of pinned all your hopes on the vitamin increase but you have already given it a good go and your symptoms are affecting your everyday living,so he needs to move onto something else.

Take care

Pip

Dear Jules

I feel like giving you a really big cuddle.

Time of the month is not the best time for me either, my stiffness and spsaticity is worse, my numbness always increases. It’s the time I dread. As the others have said there’s thoughts about whetehr its the rise in body temperature or an oestrogren effect. Either way it sounds like a GP trip is in order.

I take co-codamol as soon as I know I’m on and this helps a lot - at least I don’t have the period pain so bad and it helps with pain from stiffness. It doesn’t fix the other stuff but at least I’m in a better frame of o mind to deal with it. The first day for me is always a duvet day though.

Hope you feel better soon.

Reemz

X

Hi, I really feel for you. Having a chronic condition is bad enough, but when it is made much worse by periods, no wonder you dread them coming round.

I had a hysterectomy when i was only 31 (I am 60 next Monday), so have been let off those awful times. i still get terrible dizzy dos which are the menopause.

But enough about me,I think you need to see your GP. There could be something he/she can do to alleviate this time for you.

luv Pollx

Hey Julie

Sorry its such a bad time for you. Please go back to your GP and also start writing down symptoms, dates, times etc. If you are really bad, then go to an out of hours doctor or A and E. Dont let your GP push you away anymore and tell him you want a referral to a neurologist.

Big hug Jules, I know how scary this all is for you, but please please try hard to keep yourself calm and start a campaign to get to a neurologist now. Start fighting Jules.

Pxxx

Thanks for all your replies everyone, Rach your endometriosis sounds horrid ((hugs)), but I feel the same, if I just had some kind of idea of what was wrong it would be so much more helpful! Mish, no I don’t have anyone off the forum who I can talk to apart from phoning the helpline again, which I think I’ll do soon. Jacqui, its hard as she blames herself when we are unwell even tho its not her fault, but she is becoming more open to the idea of there being something quite seriously wrong, and saying if I want to talk to her to do it on a shopping trip so that is something. I thought maybe if I went back on the pill that might make things a little better, it did before but did put me off my food for a good week either side of it and if my dizziness and swallowing problems make a comeback, i don’t want 2 things stopping me eating. I feel better today, tho still very emotional.I know I have to start fighting, I have been keeping track of symptoms in a vague way, but its hard to make sense of them again. I know i did it for the first appointment, but i think my dr really believes vit d is the answer, and in all fairness it has had a small effect, but its not about 2.5 months in and if it was having a proper effect and was the cause of everything, wouldn’t everything have almost gone away by now?

xx

Hi Rach, like you if it turns out I dont have MS, I have a whole bank of MS info. I wouldnt say its useless tho`, as I can relate to my buddies here.

Ive been doing the rounds for 14 yrs now and have very little faith in the neuros....seen 13 of em and they often have different ideas of what`s going on with me. Some of them have shook their heads and admitted I have foxed them!

luv Pollx