Hello I'm new to the group I was diagnosed last year with m.s . last year after it was missed in 2011 I have also got strictures in more than 50%of my small bowel probable cause chrons which is going to lead to intestinal failure which means I will have surgery and a intervenous feed line put in both my gastroligist and neurologist both say the treatment for the bowel will make my m.s. a lot worse I was wondering if anybody has had anything like this that could help me as having a line is not good as not many people live longer than 2 years so I'm desperate thankyou in advance x
A quick note for the comments everybody has made. I am sat here in tears for two resons, the first is the response I have got from the members and I must say thankyou these are tears of releif and know that there are people here that can help, the second reason that I think that i am ready to accept this.
Since i came out of hospital i decided that this was not real and would go away, i had a sick note for work but got straight back into it visiting customers etc. I tried my best and have just been told by the company that they do not want me involed at all untill i am better. This is a relief in one way because i have been working from home on the laptop and ended up being in so much pain with my eyes, when i try to rest my work mobile is ringing 20-30 times a day. this has made me realise how important it is to rest up at first and i know there are many newly diognosed people will have the same.
It is a blow at first but you need to keep strong and let friends and family help, keep strong and the MonSter will be under control.
If anybody is in the same situation then it is good to talk and soon the MonSter is a sympton shared and is not something that you feel alone with
I just popped in to see if anyone had replied to my posting and believe me, I was thrilled to see that there were some replies after all ! Bless you ! Many Thanks !!
Well....shall I bore you ? Are you sitting comfortably ? I'll begin to tell you something about me and my situation !
I first experienced some Mobility problems in my very early 20's.....it lasted for a while, but despite seeing a GP or two, and also a Physician, nobody could shed any light on what was happening.......needless to say that apart from a chest Xray, I had no other tests.....
Soon after this, whilst in my Final year on my First Degree, I went abroad on Research (Textile History etc !!), and whilst in India, on my 2nd day, I obviously ate something which had been washed in "Bad" water....grapes or a salad....had to be one of these, and I got dysentery...oh boy....was it bad !!
Following this, I became desperately ill.....and grew weaker, more Jaundiced etc.....I was diagnosed over there with Suspected Malaria, Hepatitis etc etc......I lost most of my hair (All came back though !!! )
Some months later, I returned to the UK, and I have to say that since this Illness, I have NEVER been too good at all.......
My usual Practice refused to see me as I was a Student.....despite the fact that i lived at home ....they said i ought to get seen by a DR on Campus.....Ridiculous !
So, I changed my Gp, and then was examined and the New Surgery were horrified as to how thin and poorly I actually was....again though....after various tests etc (Bloods etc) nothing positive was arrived at, other than to tell me that I'd had Glandula Fever as well as everything else ! The Gp also thought that I had a tubercular bone in my foot etc, and he mentioned the possibility of MS.......soon after this, the GP left (pity, as he was super) and since then.....the other Gp's have changed, moved on etc.....
I never really made much more headway for some time, but my life altered drastically....gone was the person (me) with boundless energy.......I could barely do anything at all......and so I had to stop going out / socialising (Of course all my so-called shallow / plastic friends ditched me totally.....I no longer looked presentable and "Trendy" as far as they were concerned.....I had been doing some Photographic Modelling work prior to my illness, but those days were gone !!)
I went on to graduate, study further, eventually work....taught for some years etc...but continued to struggle upon a daily basis.....every so often I would pester the GP's , as I really wanted some answers as to why, as A youngish person, I felt so lousy, weak....listless, experienced pain and mobility problems etc.......eventually i was given a Diagnosis of CFS (Chronic Fatigue)
Having always been a skinny person....I went on to gain a large ammount of weight, which despite my efforts, I have not been able to shed at all.....
Cutting a long story short (as I know how "Wordy" I can be !!LOL) Over the years, I've found things pretty hard going......
I went on to have phases of recurrent Kidney stones, Angina, Malignant Hypertension (Highly resistant Blood Pressure, which without my many tablets each day is at alarming levels 24 hours per day ). I was diagnosed as a Diabetic too.. Have Arthritis, poor circulation, Raynauds...and according to my Cardiologist, this awfully high and uncontrolled Blood Pressure has caused damage to my heart, eyes etc.....
what about now ....??
Well for quite some years, I experience the most devastating tidal wave of exhaustion, which can strike at any time of the day...no warning.... It;s never been mere tiredness...this is seriously something else !
My mobility can be dodgy, Feels like my legs , hands etc are so weak and will not work...get cramps too...... and i have such aching muscles.....my left side does not always work too well, and i have chronic pain in my back / spine and neck.....and the headaches can be dreadful.... I feel dizzy and sickly, and my eyes are not too good.... but it's not Migraine, as I have had that...so am able to tell the difference
I have had balance issues, and the Gp said it was Vertigo / Menieres.....
My Hearing has deteriorated, and I have 2 hearing aids
I can have problems in swallowing at times, and my speech can get slurred and my voice weaker......especially as a consequence of that recurrent exhaustion, and the pain etc
Everything can be such a damn effort....sorry to whine folks..... I try not to feel sorry for myself at all....and push myself harder and harder until I am at breaking point....
I suffer with depression, anxiety etc ......I do try to remain positive....tis hard though at times..
Every time I go to the supermarket, I am aware of how I struggle...that damn left side etc, and I have problems pushing the trolley etc
I could go on further, but I'll have mercy, as I have tortured you all more than enough !
Last week, someone said to me "Have you ever thought that you might have MS ?"....after a while I did start to think about things.......
Now.....what do I do ???
In all honesty, and I am sure that I am not alone by any means, some of the GP's in my practice are not really very inspiring.....you know how it is.....you get looked at blankly, and after you've had your few minutes, they want you out ! One even told me that I'd had my 3 minutes !!
I guess I've just got to get my act together and approach one of them......Dare I ask for an MRI scan ?? I;ve never had one....
I suppose that I am deliberating as I feel rather daunted....but after all these years of having little quality of life, I've reached the stage when I truly would like an answer.....maybe I'll never get one...I'm just so aware that things are not getting any better at all....to say the least !
Many's the time that I've thought that I'd be better off out of this world....but hey..I am still here....ever the "Creaking Gate" !
Apologies for waffling on......Perhaps putting you all on the spot, but what do you think of it all ?
Many thanks in advance to those of you who will read all my waffling.
I know everyone is in the same posisition dx or not ..and i know the NHS has long waiting lists etc.. but i think its awful how when you get new symptoms/pain/numbness how we are left to deal with it until next appointment with neuro..
If it was'nt for other people to chat to on these forums etc and doing your own research i think i would be a wreck... i phoned my GP to explain about my pain/spasms have now gone and my foot is left numb.. ask if it was normal and anything i could do to help myself and was just told to keep taking meds and wait to see neuro end of month for my results.. i think its awful to leave people not knowing what to do next.. Wondering if your doing something wrong and making things worse for yourself..
I would like to say a BIG THANKYOU to all the new friends ive made and for all the help they have given ..
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