I’m new to the Forum and i just wanted to say ‘Hi’ and introduce myself and my situation. I have not been diagnoised with MS and at the moment I am at the stage of waiting to be called into the hospital for an MRI scan and further testing for MS. My problems started nearly 3 years ago when i started my little business and things have been getting more and more difficult since then. I had been to the doctors numerous times over the years with symptoms such as fatigue and feeling low and my GP had always recommended i try to relax more and de-stress etc. She even said i may be depressed and gave me some anti-depressents, which i decided when i got home, i would not be taking.
Nearly 3 years on and things have got to the point of being very difficult. The fatigue is worse, I cant even remember the last time i was intimate with my partner, my vision is now effected and my balance is also effected (though not very often)
The thing that scared me the most was 2 days ago. I’m so embaressed to say this, but who else can i really talk to! I lost control of my bowels and had ‘an accident’ … I didnt even know i had done it and could not feel any sensation down there to suggest i had done it! I was mortified and told my partner who was at home with me that day and he got me straight into see the GP again. A different GP this time. I have been struggling with constipation for a year or so now and 2 months ago i had a tear down there which was not so pleasent to say the least!
The GP’s attitude was different to the usual doctor i see and she made the call to Neurology that day. So now I’m waiting to be called in and I’m scared. I have 2 young children, a partner, 3 step kids and a business to run, clients to see etc. My heads spinning and i don’t know what to do or what to expect. One minute I’m crying the next im laughing i feel like I’m cracking up here!
Sorry for the massive post! And knowing me I’ve probably posted it in the wrong section too :-/
Also wanted to add a bit of medical history … Ive had alopecia universalis since i was 12, i have this wierd condition with one of my eyes (optic nerve / disk is bent?) I should really pay more attention at the optitions! I have IBS (So my GP says anyway due to all the constipation) Other than that and recent worries / symptoms i would say i’m pretty healthy. No anemia, deficiencys, food allergies etc. xx
Hi emma and welcome. Sorry to hear you’re having a horrible time. I’m newly diagnosed and completely understand everything you’ve said. Some days, it’s like it’s all a joke and I haven’t really got it and then occasionally, like today, the world sucks!! My limited experience says, deal with it a day at a time. I deal with it by not pre-empting what tomorrow will bring. What I wake up with is what I’ll live with and deal with tomorrow. I was so in denial, I wasn’t even shocked when I was diagnosed but in hindsight, I think I was also relieved because stuff had been going on for so long, I was just pleased to be able to say its ms and stop torturing myself with the thought that I was imagining it all. Catherine xx
Hi Emma Welcome to the forum. You are definitely in the right place, so don’t worry. Sorry for all the things that are going on with you. They won’t be helping with your obviously very busy life You are being seen by the right department - your problems do sound neurological. However, many conditions can mimic MS, so that doesn’t mean that is what you have. Some of these are vitamin deficiencies like B12 which can be found with a simple blood test. Has your GP ordered any blood tests? Do not be embarrassed by the bowel problem - unfortunately bowel and bladder problems are familiar to many of us on here. This is a difficult time for you but hopefully a neurology appointment will start you onto the road to diagnosing your problems. However, be prepared for a bit of a wait. These things do take time. I understand how you feel - we all do on here. Feel free to come on here to vent or rant and rave. We are happy to listen. Take this process bit-by-bit - do not jump too far ahead. Thinking of you, Hth, Teresa xx
Hi hon, just want to welcome you to the site. I can’t really improve on what others have said… but just to say there IS life after MS.
You will cope. You have been coping this long eh? It actually can be easier when you get a diagnosis… at least you know what is wrong and there are drugs that will help.
Thanks for the welcomes everyone I was nervous about posting!
My blood tests have come back (all but the ANCA tests which my GP says will take a while yet) My full blood count is fine, apat from i have raised white blood cells. My GP asked if i had ever had Glandular fever! Which i have not, and plus, thats something that she would have seen on my records so that worried me a bit.
GP says she spoke to the consultant on the phone and he said it DOSNT sound like MS. He has never even seen me and my symptoms go back 10 years now. He says i prob just have a virus thats why my white blood cells are high but how can i have had a virus for 10 years? The fatigue has got worse these past 18 months, but looking back ive had times when ive lost my sight (when i was 21) when ive lost control in my legs and fell, knocking myself out when i hit the deck (when i was 24) and then most recently, bowel and bladder probs.
I feel a little trapped right now … the Neuro is going to see me, and i dont want to ‘will’ myself to have a serious condition. I just want to feel better. My boyfriend called the doctor again this morning practically begging them to give me something to give me more energy! He is currently out trying to find me some kind of ‘tonic’ to give me a little boost of energy lol. I’m not that confident this is going to work :-/
Ooh emma, don’t know if this will help you and I know the fatigue is completely overwhelming, but I use berocca tablets from the chemist which dissolve into a fizzy orange drink and whilst they don’t take it away completely, I find they take the edge of and give me a much needed boost of energy.
Hello Emma, Welcome to the forum:) Hugs xx This is a wonderful place with people ranging from like me who are learning (I am undiagnosed) to very clever helpful lovely people. I don’t post much, but read a lot of posts and have learnt a lot. Sam xx
Hi the fatigue I can completely understand also the accidents. I’ve also been told I’m depressed (which isn’t the case) in the past too. Chin up, as the above post states one day at a time xx
The glandular fever question comes from the fact that it’s the only childhood illness that people with MS have had way more than people who don’t have MS. This is why it’s widely believed that the virus that causes glandular fever, the Epstein Barr virus, is involved in the development of MS. Unfortunately it’s not as straightforward as asking who has and hasn’t had glandular fever though because the EBV can also cause the sort of 24 hour bugs that every child gets so it’s impossible to tell if you’ve had it or not without having a blood test.
(EBV is just one of multiple factors in MS - lots of people who have glandular fever do not go on to get MS.)
don’t refuse anti-depressants outright. my gp prescribed citalopram whilst i was awaiting diagnosis because it is good for people with ms. i accepted the prescription but never took them. a year later i was having extreme mood swings so started taking them and i started to feel sane again.
re your accident - would your GP refer you to the bladder and bowel clinic?
they have been great with me. at the moment i’m having constant UTIs and have to self catheterise. i havent managed it yet although try every day.
if you have been constipated for too long, it forms a sort of plug so when you do start to go it overflows. this happened to me in my car outside the vets. i had to phone my son to take over the vet run whilst i went home for a shower and change! luckily none got on the car upholstery because i was wearing a full length parka.
don’t get despondent, “this too will pass” is a phrase that keeps me going through the tough times.
I was nervous about posting!