Last reply 5 years ago
Intro :o)

Hello!

Just thought I’d write an intro but unsure where to post so please move if need be (!?!)
Ok so I was diagnosed a couple of weeks ago after many years of suffering and yeah such a shocker but am not suprised as I thought this was the problem… I so wanted to be wrong but here I am…
So I don’t think I’ve had an official 100% diagnosis yet but the neuro after brain and spine MRIs showing lesions and my long list of symptoms and the fact I can hardly walk now has concluded that it is MS as he can’t see it being anything else… He has referred me on to a neurological centre to stay for a few days where I will have more tests and see an MS specialist for official diagnosis… I am thinking PPMS after reading more online…

I am organising some councelling as I need it after the comments made to me by the doctors who thought I was a hypochondriac and anxious (even though I continually tried to tell them I wasn’t anxious and not a hypochondriac)… This went on for at least 10 years so it is a massive let down… I felt like such a time waster by the doctors, often had eyes rolled and doors opened for me to leave and this was after me begging them to help and check things as I had such trouble walking…. it started with my knee buckling and then came the weakness and heaviness and numbness but no doctor ever asked to see me walk or do any further testing…. Now I can hardly walk and every move my legs make feels like I am trying to drag ton weights through a swamp… I just can’t help but think if they had listened to me all those years ago I could’ve prepared properly for this or the last years could’ve been made easier….
I am really trying to focus on the future but it is difficult…
Once I start on this I just can’t help but go on as I have a lot of venting to do… Anyway moving on :)….

This a great site and so helpful to find some real understanding understanding…. I have a mega load of questions but my arms are now getting the leg weakness etc issues….. Thank you for places like this 🙂

(& I am sorry for such negativity – this looks such a positive site… I will search for a happier place in myself again and hopefully have more happier posts :/ )

xxx

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stumbler
5 years ago

@cazzzzzy, great post and totally in the right place.
There just seems to be no consistency in the diagnosis process and you seem to have been through the mill, and beyond. MS, as a condition, is notoriously difficult to pin down. But, if you’re not referred to the right people, it’s even more difficult. The feeling of hypochondria is quite normal as you go through the process.
There’s little point in dwelling in the past. what’s been done is done and can’t be undone. You now need to move on from this point.
You now need to think of yourself. If it is MS, then this condition can be aggravated by stress and worry. The problem is here and now for you, so stressing and worry won’t change anything.
Just be kind to yourself, take things easy and don’t overdo things.
It sounds like your Neuro isn’t 100%, so they’re probably looking at a lumbar puncture and visual Evoked Potentials, to try and find the last pieces of the jigsaw.
If it does get confirmed as MS, then this is a manageable condition. Your life’s ambitions are still achievable, but you journey to achievement may have to change.
Life does go on.
So, welcome to our piece of cyber-space, where we have a range of like-minded people of all ages. And, we’re quite an international bunch as well, as you probably noticed earlier today.
Take care, Caz, and post any questions that you may have.


femke
5 years ago

Sorry you have gone through such a herroundous time an official dx must almost come as a relief to you , life does go on after dx and hopefully with the right meds you can take charge of your ms . I do know becoming in charge of your ms instead of the other way round is very important ! Life does go on !
I am sending you hugs and all the best xx femke


cazzzzzy
5 years ago

Thank you both xxx

Yeah I am trying to believe that life will go on and it can still be good… Guess I’m going through the motions of anger and worry and disbelief and the rest but yeah at the same time is also a relief to have some answers…. I have had to adapt a lot over the years to what I can and can’t do already so I suppose in a way it will be easier to adapt as now I know what I have to deal with for sure…. Used to have the hope it was something curable but like you say I need to move on and forward and adjust!… Oh boy I need to remember to be positive when my legs are numb from climbing stairs…

Also I just wanna say that all docs aren’t bad, after being referred to MAU after the whole begging with my doc to admit me with not being able to walk unaided anymore the docs I was seen by in the hospital and the neuro were all absolutely great!

Stumber ~ yeah I will have the tests you mention when at the neuro centre… It will help knowing for sure then I can get plans in motions to be in control over this demon…

Thank you both for your welcome and understanding, it really has been so helpful!!! Thank you muchly :o) xxx


celinec
5 years ago

Hi, sorry to hear you have had such a bad time and hope you find better care with your future dealings. I have to say, there is an awful lot of ignorance with ms and this is coming from someone who has been referred to as the elephant in the room by her boss 🙁 (hoping it’s not a case of does my bum look big in this!). I asked my doctor the other day if it was normal to wake up in the night with both hands in a fist (the person calling me the elephant in the room is no where to be seen in these moments!) and all I got was “oh dear”…..didn’t fill me with the greatest of confidence when building my business of handmade jewellery and fascinators!! But before I totally digress, I hope you have a number for a specialist nurse in your area (angels in disguise) and do as much research as you can. Live a healthy, chilled and happy life and the rest will fall in to place. Hope I’ve made sense! 🙂 x


cazzzzzy
5 years ago

Perfect sense! 🙂 …. I did meet my areas angel a few days ago… She was so helpful and reassured me that some symptoms were “normal” and just generally an amazing rock….

I also have any confidence knocked when things like that happen with my doc too! Yesterday when mentioning secondry progressive he didn’t know what I meant…Oh blimey…

I am researching and trying to be healthy and chilled and happy and hoping everything will fall in place 🙂

Thanks so much xxx


cameron
5 years ago

Caz, hi! So sorry to hear all your experiences. I too had a horrendous time with the first neuro I saw, but at least it didn’t go on for years..so my sympathies. Two thoughts: I believe you will improve exponentially once you’re on the right meds, whether these are DMDs and/or drugs for symptom relief. It’ll happen because you will get the right support and your body will be SO grateful! Secondly, a negative: it’s important that EVERYONE dealing with you is highly competent and supportive. If you are not 100% confident in your GP, this is the time to change him. You can’t afford negativity in any shape or form. I say that from experience. Very best wishes and keep us in the loop. xx


cazzzzzy
5 years ago

Thanks so much Cameron! …. I have a lot to learn on the whole medication side of things but I guess I’ll learn more on this journey! DMDs and the others I don’t know anything about yet but ms nurse did fill me in on a few symptom relief ones…. hope my brain can take learning and trying to understand it all :/

& yeah I will be changing docs… There is a great one at my surgery who I learnt about too late and I know I can trust him!

Thanks 🙂 xxx


pottypete
5 years ago

@cazzzzzy Hi and welcome to this place of respite.
Your account is similar to my experience. It took them 9 years to diagnose me. I had to have all the mental assessments, accusations of malingering etc. pah!

This is a great place to come, especially when you’re down and confused by this hideous condition. xxxx


cazzzzzy
5 years ago

Thanks Pete! 🙂

Oh yeah I had the mental labels with all this & when trying to claim ESA when at the medical assessment that assessment doctor could obviously see I wasn’t anxious but I had to convince her that I must be because that’s what my doctors had diagnosed…. anxiety being the reason i couldn’t walk right…. All such a nightmare!
I just longed to be able to get to and from the job I dreamed of everyday but needed ESA because i couldn’t get to and from job centre every fortnight with walking problems… And there I was basically being accused of benefit fraud…. Sorry am venting will stop now but thanks for the welcome and understanding! I’m sorry to hear you had to go through it all too! – And yeah is a great place 🙂 xxx


cwpeace4
5 years ago

Welcome Cazzzzzy! Ditto on above. The psychobabble excuse loaded from doctors drives me nuts! LOL

This is a great place though, so vent away!


cazzzzzy
5 years ago

Cheers peace! 🙂 …….. Crazy isn’t it… How some docs sleep at night is beyond me….

I’m sure more venting is on the way… I’d never have the energy to list everything..

Thanks 🙂 xxx


cwpeace4
5 years ago

Vent away!

My venting is most recently with my new neuro. She is an MS neuro I was referred to and she is not patient with answering questions whether in person or when she calls for results on the phone.
She dodges me around saying one minute “MS” with my lesions, exams and then again “maybe not” since there was little change in my more recent MRI in lesions and amounts… but in December I physcially declined and after my physical workup there I had considerable weakness in my right leg, intermittent incontinence, balance problem, spastiscity, walking was unsteady and challenging, my right hand was completely numb for days and would not write what I wanted it to with a pen (which was such a strange feeling) and my trigeminal neuralgia was in hyper mode despite lots of meds. I was a mess. So she puts me on IV Solu-medrol treatments last week and that is proving to be very helpful. I can walk without limping so much and my hand seems to be recovering…so I think it’s working. The MS nurse was much more adament that MS was correct based on my whole series of tests, rule-outs etc….but I have to wait till end of month to discuss further treatments with neuro since she is so busy and can’t seem me until the end of the month. Then add on the medical bills… enough to make me cry! 🙁


stumbler
5 years ago

@cazzzzzy, it’s best to get all these things off your chest. Then you can move on.
So vent away…………..
😯


cazzzzzy
5 years ago

Thanks guys xxx

Cw – I really feel for you & sorry to hear you’re having to deal with it all 🙁 ….. It all feels like one big waiting game right now… It’s good you have some meds that are helping for now, hopefully they can help while all this waiting is involved…. I’m also in that limbo time where waiting for an official diagnosis, neuro can’t see it being anything else due to lesions on brain and spine and ataxia and numbness, tingling, am unable to walk without support now with unsteadiness, no proper coordination and weakness etc and many more – my right hand also is starting to lose feeling the more I use it, but anyway yeah I need to have a few more tests and see the MS specialist before being officially diagnosed… Neuro thinks PPMS and trying hard to accept it all etc…

I really hope that you get the answers you need as soon as is possible… Thinking of you!!! Massive hugs xxx

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