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waiting in diagnosis

please help i am waiting to c the ms specialist i hav all the symptoms of balance problems and not being able to walk without sumone calling me drunk . i am an emotional wreck at breaking point just now after having to give up the job i loved doing as i am a carer working in an nursing home i became forgetfull and dizzy using machines. i am so tired all the time . this last year new symptoms hav arrived my eyes r really painfull like dryness behind them and now the worse one of all being incontinent at times i am only 40y old . i feel like giving up as i hate going to my doctor i feel they dont understand. i feel i am being judged

Hi Heathera x

I’m so sorry you are going through all this x I’ve been in that same emotional black hole as have many many others on here. That ‘breaking point’ feeling is horrible as you feel like you are losing it - with it seems nobody to turn to x

I get that ‘giving up’ feeling often - but you can’t because you know you need help with these horrible symptoms and have no chice but to rely on the medical profession. The doctors who we feel should put things right seem not to understand, are unsympathetic and unwilling to help - we feel this because we are desperate - unfortunately everything takes such a long time - a horrible waiting game.

You just want to run away - but have nowhere to run to - because you can’t run away from yourself!

That was the key for me - once I accepted the position I am and the fact that this is going to be a long haul - it became easier - well a bit easier anyway! I still get bad days & emotional crashes but they come and go.

I’m so sorry you lost your job - that has been one of my biggest fears - but who knows what the future holds? They don’t call it Limboland for nothing x

All I can say is the lovely people on this forum have been a lifeline. It’s packed with others who have felt like you do and believe me I’m on here all day every day taking full advantage of the kindness and support x

xxjenxxx

Hi Heather, and welcome

Going through the diagnostic process is a horribly scary, emotional time, but the vast majority of us do get through it, get answers and are able then to get on with our lives (hopefully with the right support and treatment too).

It’s important to have a supportive GP, or at least one that is doing his/her job properly and trying to be supportive(!), so if yours isn’t, please think about switching to someone else.

Whatever you do, don’t give up. As Jen said, only by finding out what’s wrong can you get the help you need.

Hang in there!

Karen x

Hi Heather

I can understand how you feel as I’ve been in Limboland for a while now.

Sometimes, the symptoms and pain get on top of me and the wait between Neuro appointments seems so long that I do get ‘down’.

However, at those times, I post on here, and receive lovely support from such great people, all of whom really do understand too.

Having to give up your job is a big thing - I had to do that too & I really missed the ‘buzz’ of the workplace (still do).

So, my advice would be - keep coming on here. We’re all here to support each other during what is an uncertain time for us.

Take good care

Bren x

thankyou for all the helpfull comments feels good to know am not alone . av been waiting on a diagnosis for over a year now had the symptoms for 14years av been passed from pillar to post it was only the last attack i had were i was unable to get out of bed for over a week i had no balance watsoever , bottom of my back was breaking and my eyes were twitching all the time ,it was my heart surgeon that got onto my doctor because doc said it was my heart ,there was nothing wrong with my heart so i think he had words with my gp to send me bac to c the neurologist as he said its been going on to long for it to be nothing. am just so tired and my legs feel like they hav bolders holding them dwn. also my eye optitions hav came bac n said they found something not rite with my field vision av to go bac to get it retested i now hav a lump in my rite eye which wasnt there before . i am so greatfull to u all for listining to me go on lol

just a wee update been to the optitions and they hav told me i am losing field vision in both eyes . this could b part of ms has anyone else experienced field vision loss this is happinging all so fast . being sent to hospital for more tests am scared now it feels so real and closer to a diagnosis

xxheatheraxxx

jojo

sorry to hear that 32 is such a young age , i feel as if am leaking but i dont feel any sensation wen this happins and feel wen i go my bladder aint emptying properly .

first sign of symptoms was after the birth of my daughter i was 26years old woke up wen she was 3months couldnt get out of bed no balance at all.doctor came out and said it was vertigo . never recoverd from the balance problems was sent for an mri at 26 came bac ok so they just left me was told to live with it which i hav. collapsed at work a year ago went to doc they said it was my heart went through all the cardiac app and tests heart was ok falce alarm . told the surgon all my sympyoms and how long i hav had them he wasnt to happy that i was left to get on with it so he reffered me bac to the neuro still waiting on app coming through that was 4 months ago still waitin av lost the ability to walk long distance, loss of memory ,heavyness in both legs , periods all over the place , now my eyes , all i want is an answer in this day in age they should b able to lol

Heathera…thank you for sharing so honestly. As I write I feel I am going nuts. I have been ill on and off getting gradually worse each time over around 20 years. The last relapse I had was almost 4 years ago now but I have not seen a neurologist this time because my dr has been so unhelpful saying it’s psychological. I am too ill to fight anymore, emotionally it is exhausting trying to do the best you can when you have doctors that are very unhelpful. I had a massive blow out with him about a year ago and he said I should go back and see a neurologist and I just said i was not being poked and prodded anymore just to be told they couldnt find anything wrong with me and it must be in my head. I am furious with the medical profession that they feel they can treat people the way I have been treated. I have a variety of symptoms but my worst is co-ordination when walking. I have stick. zimmer, wheelchair and am just about to get an electric chair and if I fit criteria a wheelchair accessible vehicle. The very worst thing about using all these things is I feel a fraud cos the docs have still not been able to find what is wrong. I feel so angry they can get away with saying things are psycho-somatic etc …not saying there is not such a thing but I spent years witha psychologist which helped me deal with how I felt about many things and by the end I said to him I think I have M S and he said if he was me he would think the same. So you see…The system that is supposed to help me is rubbish. My doc is useless even though he probably thinks he isnt and I feel stressed out. On top of this I am trying to take an access course in order to get to uni cos my children are more or less grown up now and I don’t want to be on low income for the rest of my life. I have tried to work but relapsed each time so now am trying to get educated so I can do less physical work. However college is a nightmare cos I am unwell and the college has not been able to change things so it is not too noisy/hot ( I have heat intolerance) . I feel isolated and upset. So alone. Isolated at college, no help from the doctor and with no diagnosis no help medically to physically help me. Anyway…you sharing made me feel I could. Most people who have been ill solong have a diagnosis apparantly. I just do not trust docs anymore and I am fed up with being alone in it all. I have written here before but cos I don’t have a diagnosis I felt a fraud.

Heathera…thank you for sharing so honestly. As I write I feel I am going nuts. I have been ill on and off getting gradually worse each time over around 20 years. The last relapse I had was almost 4 years ago now but I have not seen a neurologist this time because my dr has been so unhelpful saying it’s psychological. I am too ill to fight anymore, emotionally it is exhausting trying to do the best you can when you have doctors that are very unhelpful. I had a massive blow out with him about a year ago and he said I should go back and see a neurologist and I just said i was not being poked and prodded anymore just to be told they couldnt find anything wrong with me and it must be in my head. I am furious with the medical profession that they feel they can treat people the way I have been treated. I have a variety of symptoms but my worst is co-ordination when walking. I have stick. zimmer, wheelchair and am just about to get an electric chair and if I fit criteria a wheelchair accessible vehicle. The very worst thing about using all these things is I feel a fraud cos the docs have still not been able to find what is wrong. I feel so angry they can get away with saying things are psycho-somatic etc …not saying there is not such a thing but I spent years witha psychologist which helped me deal with how I felt about many things and by the end I said to him I think I have M S and he said if he was me he would think the same. So you see…The system that is supposed to help me is rubbish. My doc is useless even though he probably thinks he isnt and I feel stressed out. On top of this I am trying to take an access course in order to get to uni cos my children are more or less grown up now and I don’t want to be on low income for the rest of my life. I have tried to work but relapsed each time so now am trying to get educated so I can do less physical work. However college is a nightmare cos I am unwell and the college has not been able to change things so it is not too noisy/hot ( I have heat intolerance) . I feel isolated and upset. So alone. Isolated at college, no help from the doctor and with no diagnosis no help medically to physically help me. Anyway…you sharing made me feel I could. Most people who have been ill solong have a diagnosis apparantly. I just do not trust docs anymore and I am fed up with being alone in it all. I have written here before but cos I don’t have a diagnosis I felt a fraud.

Hi wondering if anyone can help not been diagnosed as of yet but having severe difficulty coping with symptoms this has been a rollercoaster ride since February this year and feel as I’m going backwards in getting answers!

my first symptom was as if water was running in my head one night which I ignored and it passed the same night thankfully but the next morning feeling normal carrying out normal routine severe vertigo hit off balance bouncing off walls and finally a fall this did not passed and gave me such a fright I had to phone for emergency doctor appointment my first in 13 years going to the doctor which within me telling her the symptom of dizziness and room spinning blurred out the word labrythitus no questions asked I staggered home and hoped this would pass as it did or at least I thought until through my sleep on occasions I would wake up as if I was in a boat!

this was a hellish first month on thinking as I had been told that it was my inner ear that was affected until new symptoms hit at work it was as if there was an army of ants under my skin between my shoulders with electric shock like sensations pinging all round my body down my legs through my arms into my fingers again thinking the doctor that had seen me before and hardly being unwel I put this still that it was my labrynthitus as my inner ear was next to my brain I shrugged this off aswel hoping it would die off as the other symptoms did

Fighting this for months I eventually felt a bit better for a few weeks granted some bad days i had scheduled another appointment with a doctor as driving one night I began to get really dizzy and antsy at the wheel when my left arm decided to go really weird I lost all feeling and could barely lift it I managed to pull over square myself up and change positions with my girlfriend I explained this to him and the fact that in the day I had went to see him my ribs in the centre of my torso where in so much pain as if they where cramping this again moved on to my left nipple area where it would cramp and then let loose he advised I take pain killers and couldn’t tell me what was wrong with me!

After a week of excruciating muscle spasms all over my body ribs legs arms buttocks neck even my skull felt as if it was pressing into my brain along with odd twitches in muscle groups aswel another doctors app on tment with another gp the head of the practice she listened she spoke out with answers and was honest that it was outwith anything she specialises in and referred me to a neurologist this was a slow process taking 8 weeks to finally go and “get sorted” one of my better weeks since February this was now July he listened to my stories had a long neurological exam thinking everything was going far too good feeling best as I had since February I felt as if I was wasting his time he observed that my legs where jnfact twitching through the hole exam usually I can feel this happening but not at this point he referred me to get an mri on brain and neck which I had 4 weeks later this was just over 3 weeks ago I had the mri I have been in intense pain the last 2 weeks which I have barely slept I have been waking up through the night feeling dizzy or my left shoulder down to my fingers in 9/10 pain which feels like a spasm or from my left hip down to my toes tightening and then letting Loos I thought I had the emotional capacity to fight this but it’s all got a bit much for me recently with painand lack of sleep and no answers I’ve been put on a 3 day heart monitor due to not being able to fall asleep I have heart palpitations when I doze off they come wake me up and this happens till there’s no point in going to sleep has can anybody help is this ms?