It's a total hopeless situation,new here,Please help me if you can.

New diagnosis and before diagnosis
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Hi everyone, I am new here.

I was just doing some research on MS,as I speak to a friend about my unexplained of different pain of different part of my body,it took me long enough to be finally diagnosed my right hand problem with a carpal tunnel s (sorry don’t know how to spell it) along with a ganglion on my thumb,I read of what is MS, I think I fit myself in most of the symptoms, Physical symptoms of occasionally vision blur,balance problems and dizziness,fatigue, bladder problems and stiffness ,now very bad memory and thinking,and sometimes when I read like a note, it was actually written yesterday, but my mind tell me it’s Tuesday, for no reason.until someone read the same note, and correct me, I wouldn’t notice,there are quite a few part of my body have chronic pain, like nick,low lumbar,my hip and knee, it effect my walking I am limping one way or another, or walk suddenly it would feel my knee give away, and have to stop and stand try to feel it again,when I first get refer to a physiotherapy, he said while you have so many places is not functional right, I must need to pick a part which is worst, so I said my hand, that time I have not have ganglion on my thumb yet, but then after few sessions, he said it himself there is some neuro tension, he couldn’t do much for me,in the end in the report, says no much improvement,but my last session with him, my right hand had a extremely pain,so he took my to hand-injury team which is next to their unit, had another staff to look at my hand, even she try to gentle touch it, it was in a shape pin’s needle pain,so she put a splint on me,ask me if it did reduce the pain, I said a little bit better then I went home.he promise me when be transfer me to hand injury to check out my hand, then it was delayed, and delayed, with my hand pain on-going eventually I was seem by them again,but now with a happy face, it did take some agency help me to get to them and ask for my final report. because they can’t be bothered.

follow with the hand injury lady,I do feel she has changed how she treat me from previous time,the caring friendly gentle lady is gone,she was very hash and didn’t seem to care at all. send me home with few exercises and when I was about my hand she said is soft tissue damage,she said I just have to use it, work on it,build the muscle.I went to ask a friend, my friend says there is no soft tissue damage take over an year still didn’t recovery. and the middle tendon comes up like a small curve and going down as I told her,she didn’t send me for anything, just assume it’s nothing wrong in side.

in her final reports she has kind of said I have been overly thing about my pain, and I am not fully effective by the exercise she is giving to me,and also said something like In my mind I do not believe I will get better… totally send me hell.

then funny enough, next day the ganglion or nodule appeared on my right thumb. made my hand even more painful. it take another hassle to go back to their unit made a NHS complaint, and their manager called , and I insisted to go back for a re-diagnose for an different staff. I have lost my faith in the staff who was seen me before, and try to blame everything on my mental health condition. then I was finally able to know what I had was carpal tunnel and that is a ganglion.

but because previous staff has decide to refer me to pain clinic, so the second staff even diagnosed me, she didn’t offer me any treatment,instead of treat me, she said I will keep you in our book, and to see after I seen pain clinic if they could be any assistance or so. then I went to pain clinic,the pain specialist decide refer me to a hand specialist unit, which I don’t know what will be the difference from the one I was seen by, and he sent me for a lower lumbar x-ray, when I asked him why wasn’t I been sent for MRI, he said i didn’t fit the condition to have one done.

a week later, he called saying my X-ray come out normal,didn’t mention to me any update about the refer,and my back one particular disc around even gentle touch is painful, and restricted for me to bend forward and backwards, by look at it, I think he will be discharge me soon as well, for me took such a long time to try to seen, hopefully to get a correct diagnose, in the end my hand developed worse,other symptoms still stands and getting more and more wired.

during the time I was seen by those different departments,I have tried few times to ask my GP also different GP from the family practise to refer me a neurologist, every time I was refused to get refer,one GP says I do not need one,she said she is the professional, I am not, she also said it’s the NHS system, I have to go through physiotherapy, hand injury , and what so if they say I need neurologist, then maybe she can refer me…

another horrible GP said to be , ain’t you know NHS is in debt,you ain’t suppose to come here to ask this refer and that refer,our system just can’t afford it.that day I was in a really self harm mood, and that’s how she respond to me.

which upset me and pushed me to the edge of the cliff, I just want to end my life. had another mental health break down, instant suicidal idea,I do suffer from long term mental health problem, but I think that is still not give them right to blame all my symptoms to my head, and don’t investigate properly to rule out what problems I really have.

all they do is to sugar coat with it,with you are too young you won’t have it,or GP say I have already refer you to physiotherapy what else do you want me to do. even I was holding my hand saying how much pain is was, she said there is nothing she could do. she does not take any effort to try to help me get better rather ignore me.

by read through few of the posts, you guys are really lucky to have helpful GP or private doctor to rule out the tests and get diagnosed,unlike me forever in endless pain day and night.or maybe it’s because I am Asian, they just think we should suffer and die alone.

I don’t know what is my diagnose,I can’t even put myself to MS Register, lol, no one cares about me.

once upon a time I thought who ever willing to work in health profession they were meant to be care about patients.

I tried to seek for help to 10 people, then 10 out of 10 turned their back on me,ask me to go away, and think I am a burden and how could they expect me to believe every single word they are saying,my hope is dead little by little because of their lies.

I am appreciated whoever managed to read the full post, my English isn’t very good,hope you guys do understand what I am trying to say.

Anyone have any suggestions?

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I am sorry that you are having such a difficult time.

Probably you won’t take any comfort from this but, for what it’s worth, I understand that most people who go to their GP worrying that they have MS don’t have MS. That is absolutely good news - the reassurance that a GP can give, having assessed the situation and judged that there isn’t anything too alarming going on, isn’t necessarily a brush-off: it is can a perfectly valid therapeutic intervention - even if if it sounds a bit brusque!. Please do not think that you are being undermined or disregarded just because people don’t think there is anything too serious the matter. My own approach has always been to try to take any reassurance going and try to be comforted by it. If it turns out htat there is more going on, then time will reveal it, no question. I do know that is easier said than done.

Feeling worried about one’s health and feeling frustrated and anxious about our medical advisors not taking us seriously enough is a stressful and uncomfortable place to be. I do hope that time eases your concerns and that your pain and other difficulties ease. Please be reassured by the knowledge that, if there is something serious amiss, it will show itself in time, clearly enough for any of your medical advisors to see. Time is the best diagnostician, as they say.

Alison

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Is there an er you can go to when you are in that kind of pain with your hand?Maybe if getting in there they will do more testing.I feel really bad you are in this spot,I have a lot going on also so can feel your pain.I would keep pushing until you find someone that will listen.Good luck to you.Hang in there and do no harm to yourself,please.

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The advice here is good.

Wait if at all possible for the weekend/ early evening and head up to A and E.

GPs are general and although mean well, the majority (certainly all the ones I’ve seen in 4 surgeries in 3 towns- moved a lot recently, now that’s tiring!) have very little, if any knowledge of MS.

99% have been excellent in trying to help though, using the Internet and books/ phone calls etc.

The 1%, well, he was just a total muppet anyway.

I got taken in on a Monday after seeing them Sunday- they had no beds available and wanted to stick me on a trolley in a corridor. Thought F**k that for a game of soldiers, spoke nicely with them (“nothing we can really do, go home sleep in a proper bed and come back”) and they gave me a time to turn up and see a Neurologist on Monday.

Taken in, tested, prodded, CT scan (MRI later in the week) spinal done and got the dx about 3-4 months later. after numerous days of further testing.

Hopefully you don’t have MS and whatever it is isn’t too serious.

Don’t even think about suicide.

You will break the hearts of those who do love you, even if you think they won’t care.

Good luck and best wishes

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Amen to your wise words about self-destruction.

Not so sure about your advice on what A&E is there for, however. Maybe it’s a generation thing and it’s just because I’m middle-aged that I think A&E is for when you’ve had a heart attack, or your child has eaten laburnum seeds, or your granny has fallen off a ladder and broken her hip, or you have just been cut out of a burning car, leaving your leg inside it. In other words, there’s a clue in the name.

Alison

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Hi MsSorrow,

One thing you can do is to break your problems down. Say into your body, and the NHS support. Take the first one:

  • Write down (and I really do mean write - like with a pen) all your problems.
  • Now write them down again, but putting them into groups (you’ve said: vision blur,balance problems and dizziness,fatigue, amongst others), so balance, a knee giving way, dizziness might all group under balance.
  • Next, write down the list of groups again, putting the worst first, and so on down to the one that bothers you least at the bottom.
  • Now, write down the top five groups.
  • Finally, you can type out a list of five groups (if your handwriting is bad.

Next time you see an NHS professional, you can say:
“There are several things causing me distress, but the worst one is …”
This makes you come across as organised, not in a panic, and concerned with your own physical health.
This make it easier for an A+E person to deal with your most important problem.

Now, remember that it actually costs a GP to refer someone within the NHS (yes, it is a crazy setup) so that some GPs just will not do it on request. That makes A+E your best place to start (probably), but you need something from the top of your list that they can focus on.

Geoff

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Thank you for your advice I have tried with A&E they will actually tell you to see your GP, because there is no broken bones and no bleeding. So I won’t go to emergency to sit for hours and it can’t solve a thing 了.

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Hi doctor Geoff It is a good idea to write it down, but the symptoms changes around, it really is hard to record which day which part is extremely pain, like my knee and hip if I lying bed all day, they won’t cause pain, I have been out of work for over a year now, and GP said they are not able to refer me, only the pain specialist from pain clinic can refer, is that true? I will try to use your method to write, grab a pen is painful sometimes, most I try audio type from phone. Especially have most people just like simply blame on my mental health. Thank you for all you guys been helpful very appreciated.

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hi ms sorrow

you have had excellent advice here.

i’m worried for your safety - suicide is a rubbish plan!

speak to the samaritans if you feel like doing something drastic.

where there is life, there is hope.

people care about you, even complete strangers have listened and replied on here.

carole x

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