Please help me, I am desperate!!!!

Everyday living
1

It has been a long time since I have posted online and I hope that someone can please give me a little bit of help or something. The majority of people who know me call me Jen and I used to be a very happy go lucky person but not now. Over the past couple of weeks I have became numb over various parts of my body and it is scaring me senseless, I don’t have a neuro appointment until 5th August and it feels as if it is years away and I just need someone to talk to about this. I don’t have anyone who I can talk to about anything about this crap disease and I don’t suppose I have ever accepted that I even have it myself, if accept is a word to use for it. I ha ve posted on PPMS pag\e as well for some help

I know I am waffling and I am sorry for that, but I suppose I am kind of at the end of my tether and I really don;t know what to do and I just need a bit of help and someone to tell me that I am not going off my head or something as that is what I feel as if I am doing. I am trying to be brave for everyone, although it really is not working, when I say everyone, I mean my son and my parents and my brother and I can’t be brave any more. All I want to do is cry and cry and cry as I feel so helpless now. I hav e loads of things I need to talk about, but this new progression really is making me want to crawl into a cupboard somewhere and hide if I could and cry.

Sorry I think I have went on long enough and I wouldn’t blame anyone for not answering this message as it is so down, but if there is anyone out there who could please answer me to help me I would be really grateful.

Thanks

Jen xx

2

Hi Jen, sorry you are feeling so low.

I do get what you are saying. I have a lot of numbness too. It has dfinitely been made worse with the awful humidity at the moment. I am hoping that we will all feel a bit better when the weather cools down.

It sounds as if you have lovely family and friends who you are a lot about but you really must talk to someone about how you are feeling. Do you get a any help from your GP?

Also, I would definitely contact your MS Nurse and bring forward your nwueo appt. Sounds like you need to.

Don’t apologise for waffling. We all get days like this. How long have you had MS?

Hope you manage to get some help Jen.

Shazzie xx

3

Jen sweetheart, firstly don’t think ppl will ignore your plea… If they do then so be it. Secondly, can you get an appointment with your gp at the very least and tell him/her what’s going on. Thirdly try phoning the ms society helpline and talk to somebody who may be able to help and advise you… And last but no means least, please try not to stress over these new symptoms, you’ll make them feel ten times worse by doing so. Get help, get advice, get a positive outlook then you’ll soon get your smile back. Stay calm, lots of love and (((hugs))) xx

4

Hi Jen

Don’t apologise for feeling the way you do. Whenever I get a worsening of symptoms or I’m having a relapse I always find it scary and it makes me feel a bit down. MS is such an unpredictable condition and that’s what makes it so hard to deal with sometimes.

I don’t have any answers for you, you’ve already had some good suggestions.

Here’s a <> to make you feel a bit better. Try and stay cool and perhaps do something to take your mind off the numbness. Find a good film or book to enjoy. It doesn’t take the numbness away but it gives you something else to focus on for a while which can help.

Tracey xx

5

Hi Jen

I know how you are feeling - and don’t apologise for saying so!

I am no expert by any means - this is all quite new to me - but I have experienced what you are describing. The first time was two years ago - I was numb from my waist down - and all the tests were inconclusive. After a few weeks I was back to normal. The next time was earlier this year and eventually I was numb from the chest down. This time the tests led to a diagnosis but again after about a month, I was pretty much back to normal and still am more or less.

Waiting for the neuro appointment was awful and I know why you are stressed. One thing i did was ask my GP to arrange the MRI scan and blood tests etc, that the neuro was likely to want to see, in the meantime. He did that and this made the neuro appointment so much more valuable. Might be worth a try.

No good telling you not to worry - but lots of people on here told me that whatever happens, it is not the end of the world and I think they were right.

Take care Jen

David

6

Hi Jen.

Don’t apologise. I’m having a tough time at the mo and we all get scared. People on here are really generous with their support and advice and don’t judge.

I’ve not experienced the numbness you’ve described but it sound horrendous. I just wanted to show my support. You can’t be strong all the time. I don’t like to be upset in front of my mam but she loves you and will want to help you even if just by listening.

Take care

Dawn xx

7

Hi Jen, I was diagnosed with RRMS last week. My most recent symptoms started of with numbness down my right side, along with what i thought was excruciating toothache and numbness and tingling in my mouth. I went to see my doctor and she told me to go straight to the A & E dept at my hospital. I was admitted that evening and stayed in for 2 days while they did tests, an MRI scan and numerous other things. I was also asked to go back for a lumbar puncture. 2 months later and i have been officially diagnosed. Going over my past medical history i have had several episodes of numbness in different parts of my body, and they think i have had MS for a few years but have been unaware of it.

The numbness has worn off now although i do have other on going symptoms. I know what you mean when you say u just want to cry your eyes out, and i have done it loads of times. My family have been brilliant and cried along with me. I have just informed my employer and they and the girls i work with have been fab, and they all keep an eye on me and help me if im having a bad day.

My neurologist has recommended i try a new drug Tecfidera, its just been passed for use on the NHS and should be available for patients October/November time. I would recommend you speak to your local MS nursing team (mine have been brilliant). Other than that this forum is really good, i login quite often and find the posts are really helpful!!

Hope this has been some use to you

Max!

8

Jen,

I had a seziure back in March but have had symptoms for over 3 years now. I had my MRI of brain done in June and it showed lesions and swelling. They think MS and epilipesy too. Thing is I am caring on as normal and trying not to let it affect me. They are starting me on anti epilipetic drugs tomorrow and I am too get another MRI of spine, EGG and lumbar puncture, I am still able to work so dont worry, it is scary but stay strong. I am brand new to this forum so hang in there, there are lots of us xx

9

Thank you everyone for all of your wonderful advice and kind words, you are all so kind and caring. I had forgotten what this site was like, it has been so long since I had posted (as I said). I was diagnosed in May 2009 and it was as if my whole world collapsed, but in the beginning I thought it wasn’t going to beat me and it didn’t and really it didn’t. Not really until this awful progression took hold of me, I contacted the neuro secretary to try to bring forward my apptmnt, but he is on holiday so I can’t get an earlier appointment, so I will have to wait. She did email the MS nurse and she did phone me and has started the ball rolling for a couple of different things for me, speech therapist for one and a urinary nurse, she also contacted my GP for other tests to be taken.

My own GP is contacting me anyway on Thursday to discuss my medication with me, she was doing this anyway, she is great so I .have a good contact with her.

The thing is although I do have family around me, and I have a son who is 25, I think they are all having difficulty acceptig things which I suppose is normal. I don’t have friends as they all ditched me when I was diagnosed.

I could go on and on and I don’ t want to do that, as I will start to bore you all with my rantings. so I will go for now and sign off.

Again, thank you all for giving me such wonderful, kind words.

Jen xxxxx

10

Hello Jenn,

MS is shite and so many people are unaware of the physical and mental effects of the disease. Have you tried to find your nearest MS Therapy Centre (try to Google “MS Therapy Centre”).

Is there an MS nurse for your area? Ring up the MS Society there may be an active branch of the MS Society in your area. Both of these might be able to help. Maybe try to get in touch with your neurologist and explain the situation. Bit of a long shot but your GP might be able to help/pull a few strings…

I know this all means leg work and talking on the phone without bursting into tears (I have been known to burst into tears) when talkng to strangers is the last thing you will want to do. Daw up a list of things to do, people to ring and try to work through it.

Good luck and try to remember it could be worse, yes it really could.

Patrick

11

Hi Jen,

I think we all go through the stage your experiencing at the moment.

For some it is over and done, and lets get on with life, for others it is hell !!

I was diagnosed in 2001 with RRMS by 2008 I had the pleasure of SPMS aswell, Oh Heaven !!

I was mis-diagnosed in 1984, at the age 22, with frostbite in the army whilst in Norway.

I still get down some days, but have an expression of “UP YOURS” to my condition.

I have been able to do what I want and try to enjoy my life to the full.

I hope you areable todo the same. Andy

12

Hi Jen

As lots of others have said, you have no need to apologise - we can probably all relate to what you’re feeling. You’ve had lots of good replies already, and I just wanted to add that it may be worth getting your GP to refer you for Cognitive Behavoural Therapy, which could help with how how you’re feeling. I find practicing mindfulness meditation really good too (I took part in a study a coule years ago that was funded by the MS Society, and it helped loads with things like pain management or depression).

Also, I know you said about trying to be brave, and I think us Brits think being brave means keeping a stiff upper lip and suppressing any negative feelings. Personally I think being brave means being honest about how you feel and facing up to your emotions (like you’ve done in your post). No one will think bad of you for finding things so hard (or at least, if they do then that’s their problem, not yours), and it could actually be a really positive thing and bring you closer to others. So if you want to cry & cry, then do it. It might not feel nice at the time, but whenever I let it all out, I usually feel an awful lot better than when I’ve been bottling it up.

Dan

13

hi jen

for me the worst thing about this condition is that it keeps moving the goal posts.

following my dx in 2008 i was determined that i wouldnt be seen as a victim.

i did a great job of it and actually had many times of happiness.

i had a relapse in january and although the worst symptoms have improved, my happiness has suffered.

unfortunately, my happy trick has always been to get tickets to see a band and have something to look forward to, but now my finances are in a dire state.

i took my husband and son to see neil young on sunday

although the concert was excellent, it has left me feeling exhausted!

i can’t even plan my next treat because i’m so skint.

anyway jen, i will just have to find another happy trick.

what sort of things make you happy?

make plans to do those things. from arranging to meet a friend for coffee to getting tickets for a concert/play/film.

i have found that happiness needs working at.

as dan said, mindfulness meditation is very helpful. its all about accepting the moment, appreciating the moment.

i wish that i could meet you face to face, hold your hand, make you laugh (i do a crazy walk!!) and see you smile.

as for the numbness, i think we all have that to some extent.

just tell yourself “it is what it is” and work towards feeling happy again.

carole x

14

Numbness is one of my main symptoms … had it on and off for years now and quite often forget about it. I know it differs in people but what I’m saying us don’t panic. That makes things worse and yhis humidity definitely makes things worse. Are you on any medication? Have you an m.s nurse you can speak to? This numbness may not mean your progressing. This disease is full of symptoms that unfortunately we deal with and live with daily. I’ve been diagnosed ten years now and I’m still doing okay but have numbness and sensory symptoms a lot. I’ve had pins and needle like sensations in my hands for three years this December. Again I forget about them … its only when I think they’ve gone I then realise they haven’t. I’m not sure what I’m trying to say exactly but I think my aim is to give you reassurance in a roundabout way x