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Undiagnosed

Anyone else out there with all the symptoms but don’t have the energy to go to the Gp just to be fobbed of .

Its down to you to become persistent with everything concerned with MS. I know it shouldnt be that way but that is the unfair reality of it. Also, if you don`t ask, you don,t get.

Make it your number one priority and take control and dont be fobbed off. Its bloody hard work but it`s better to know than not knowing and the hard work will pay off.

Thank you for your reply. I wil make that call on my next good day ,I hope it’s soon .I try and avoid thinking about it on those rare occasions. For the minute I have to pull myself together and get to work I’m so so tired only managed 3 hours sleep last night not mentioning all the loo trips .

hi dawn

make sure you get on to your gp asap.

as for the annoyance that is a neurogenic bladder, see one of the nurses at your nearest bladder and bowel clinic.

you can self refer or you could ask your gp whilst your there.

they can teach you how to self catheterise - yes i said ‘no way’ but now i’m so very grateful for them.

it means you won’t wet yourself for an hour or two!

carole x

Dawnmn,

It can feel like the right thing to not waste your energy on fighting the system, but it will be you & yours who will have to deal with the consequences of not doing stuff.

It is always a trade off. And sometimes the effort can pay off in ways you can not yet imagine.

Good luck

Mick

Hi Dawn and everyone else. I have just come back from an appointment with a neurologist after my Gp referred me in February. I too have all the symptoms, but the neurologist said the fact I have had them for a couple of years on and off does not fit an Ms profile. I didn’t think there was a typical profile! Fobbed off is the word. He reluctantly said he would book me an Mri scan but it wouldn’t be for a few months because he didn’t think it was urgent and definitely not Ms. How can he be so sure?

Maybe we should start a fobbed off club.

My neurologist keeps going on about the number of tests I have had and how, in his opinion, my symptoms don’t add up to anything.

I told him I think I am being fobbedoff and he just said he is sorry I feel that way. He also says he is sure I will soon feel better. My GP is lovely when I get to see him, but when I told him I just want to get back to normal he just gave me a weird look and looked down at his feet.

I honestly didn’t know it was possible to experience the kind of symptoms I experience and I have been told that I have to put up with the neck and shoulder spasps/pain because the Naproxen doesn’t work. I also didn’t know it was possible to experience the kind of tiredness I feel or the weakness I feel. I can’t lift a watering can of water and I can only get round the supermarket with a trolley regardless of how much/little shopping I need.

He also reckons I haven’t had a stroke, don’t have a brain tumour, fibromyalgia, Parkinsons or ms. That’s fine but as far as am aware I haven’t had all the tests for ms yet and he is not an ms specialist!

I have a cervicalspineMRI on Sunday but other than that I really feel like giving up on the NHS.

I can’t help thinking there is an element of ageism in my case as I am 63.

So unfortunately Dawn, you are not alone.

Best wishes

Grandma x

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Have they given you blood tests? Thyroid deficiency can present as extreme fatigue such as Dawnm mentioned. I have that on top of MS and I remeber geford it was diagnosed the crushing effort to do the least little thing.

As for Grandma, I too have had teh “its your age”…and wanting to thump the GP. But go back, insist on 2nd opinion, referral to consultant. It may not be fast, just stick in there.

Hi, Yes I have had my blood taken in February and I was a bit down on B12 so I had top up injections that made no difference to the ‘MS like’ symptoms. I think Grandma is right, we need to set up a fobbed off club!

Please let it be noted that I don’t want to thump my GP. He is actually a very good Dr. He is not afraid to say he doesn’t know something. He listens and he doesn’t interrupt.

The problem I have is with some consultants. They are too much in love with their own voice, they interrupt and they have this amazing ability to make me feel I am a complete waste of time and tests. I have know wish to thump a consultant either. I think kicking his are would be a lot more satisfying, if only I had the strength and could be sure I wouldn’t fall over doing it !!

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perhaps we should have a “safe trigger phrase” like “Please listen at my pace”

M

Yes Mick, absolutely. One of the things I had to try and do at my appointment on Monday was push the Dr’s fingers up with my fingers, if that makes sense. Anyway, he gabbled on so fast and I wasn’t really sure what he was asking me to do. There were things I forgot to mention because I felt so rushed.

Would be happy to join fobbed off club as it seems to happen so much. Dawn can relate and really feel for you truly hope you have an answer sooner rather than later.

Knowing that your not the only helps a little. Slightly reluctant to admit that my process is ongoing six years since I personally had the penny drop as to what was occurring. On the fourth attempt to get a diagnosis, have lesions, have nerve damage Legs hands. And the best a professor can give me is old age.

Suffice to say am now escorted to appointments by family member to attempt to rein in my sarcasm and contempt. Thank goodness I am a pacifist, or it could get messy. Now have to travel forty five miles to another hospital on this latest attempt at diagnosis. Very brave man actually after letting him know that I recently found out that I have an Aunt, half sister and cousin all diagnosed with MS, he responds with you do realise its genetic and you have passed it on to your children.

Very good job my son was sat there. Bless them.

I know exactly how you feel Dawn. In 1996 I had fatigue,optic neuritis and Limb weakness. I was 1st told by my GP I had work related stress, then ME. In 1999 I had the same issues twice i and had the same reply from my GP. I then took the decision to change my GP. Within 5 minutes explaining my issues to my new GP he advised me I could have MS and urgently send me for an MRI and Lumber puncture. Within 3 weeks I had the diagnosis of MS. I would ask him to send you to see a neurologist if he refuses change your GP. To be honest when I finally got the diagnosis I was relieved to find out that I had a condition and that I wasn’t not imagining my health issues. Hope this helps.

Thanks everyone for your replies it makes me feel like I’m NOT going crazy. I have just completed forms to change my doctor hope they can read it has it’s a bit all over today . This site is so helpful has I have not told any of my family or friends that I suspect ms .The reason for this is that I’m all talked out they have heard it all over the years . It would be fantastic to say to all of them I told you I wasn’t well .( I do mean it in a nice way ) .

Quick question for you all I’m just about to change doctors should I mention that I suspect ms or just tell him my symptoms ?

All doctors get patients telling them what they think their problem is. After studying for about seven years doctors are not inclined to give a patient’s opinions much time and sometimes can get irritated. It’s best simply to describe your symptoms. Regards, Anthony

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Good Luck Dawn. Hopefully as a minimum you can get your new GP to arrange an appointment at the Hospital to see a Neurologist.

Its easier if i point you to my blog. do NOT give up.

It took me over 10 years to get diagnosed and i had my first sympton in 2000 well i think i had them before that but i never got onto the neurologist merry go round until 2006, finally diagnosed with PPMS in 2016.

Hi thanks for reading at the minute I’m not worried about the trips to the loo has I’m used to it , I was told by a doctor that it’s anxiety many years ago . Luckily I have had no accidents yet .