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NEWBIE & NEED HELP & ADVICE PLEASE

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laurachic
laurachic

Hello,i have just come across this site & im hoping im on the right page,im new to this but im need in some help & advice & wondering if anyone has had same problems & have a ideal what it might be. Im 31yrs old with 3 children,i been complaing with leg problems since i was a child & been fobbed off telling me its growing pains,which im sure i stopped growing by now,any how my left leg has been giving away so badly i nearly fall i went to docs & they said to me if i lose feeling in both legs or my other leg does it also go straight into A&E within a hour leaving doctors i went to get up knowing my legs was getting worse as i had heavy feeling in them & struggled to walk (crawing along) i got up from sofa after short rest & my legs was competly numb i fell too the floor like jelly & was unable to get up from the floor i was paraylised from the waist down,i was taken into hospital through A&E when they rushed me in thinking i had Guillian Barre Syndrome after staying in hospital for 24hrs keeping a eye on me they didnt think it was this & sent me home,since coming home fom hospital i have a slight numb feeling down my left leg & sometimes travels to my right (like as if you touch a scar that weird dull num feeling) i have this all the time & im unable to walk without a zimber frame or some days unable to walk at all,i have-had no pain in my back or legs i just have the numb feeling,the problem i have i dont know what my legs are going to do i dont know when im going to fall or not as i have no warning sign,im scared to go out incase & im also embrassed being seen with a zimber frame being so young im finding it hard as i cannot look after my children like i once did,i have been like this for 8wks now & i have no change,the hospital sent me home did not want to refer me or assess me again as he felt i did not have GBS,therefore i have been left like this for 8wks,i have been back to my docs & he wrote a letter to ask why did they leave me inthis state as the doc see me fall on the floor twice within the time being in the docs,i finally got a app with the doctor i see in hosp after my doctor wrote a letter but he has given me a appointemnt for 3mths time....can you please advise me if anyone else had this or know what is wrong as i said im in no pain my legs just dont work! im finding it really hard & upsetting and i really dont know what to do,i keep trying to scut the net to see if there is any of my syptoms which im unable to find but i thought when i do come round to my app at hosp i can let them know or consider other ideas without them saying oh im not sure....oh sorry i forgot to add i had a MRI scan which i had to fight for whilst in hosp,this came back inculsive and slight pressing on my L4\L5 disks in lower back but not effected as wrote on letter,i would like another MRI to check again but no one is listening to me & im unable to get one,icannot afford private,i just i wish i knew what was wrong as it maybe minor & i can sort it or if its something in my life i will never get rid of i will get on with my life & deal with it but not knowing & being stuck in house for 8wks is very hard & getting me down. thank you so much for reading this i really hope someone can help me laura x

1 like, 9 replies

9 Replies

  • derek76
    derek76 laurachic

    Posted

    Is it a neurologist that you have an appointment with and are you on any long term medication for any other conditions?

    Sadly 12 weeks for an appointment is not too bad. I waited six months and then about three months for the genetic blood test results to come back and then more waiting to have nerve conduction tests.

     

    • laurachic
      laurachic derek76

      Posted

      yes its for the neurologist for july end of july, no im not given any medication im not on any at all,im also in no pain im just numb down my left side like a dull feeling.

      its not right to be left that long,maybe as i was rushed into A&E i dont know,i know they did my bloods in hospital but im not sure what they did as i wasnt really with it if that makes sense.

      can i ask what if your problem?

  • laurie_14419
    laurie_14419 laurachic

    Posted

    Hi Laura,  I have similar problems with my legs...that is worsening to the point where I use a walker when out and about. It's more embarrassing without the walker as I worry people will think I'm drunk or on drugssmile I haven't fallen yet, but gotta be real careful. One neurologist felt I had PD...but I'm not so sure. I need to get a MRI of my low back, as I have sciatica. My legs feel like they are wrapped in concrete (very heavy)...and hard to lift feet off floor. Do you walk stiffly with flexed knee?   Laurie
    • laurachic
      laurachic laurie_14419

      Posted

      hello Laurie,

      its horrible isnt it....i cant be with out my zimba frame which i only use in doors as i only have the room for this,but when i go out which is not very often i use my wheel chair as i feel this is so much safer for me,i use to get heavy legs & as you say find it hard to lift now i have no feeling although i do its like a dull numb feeling more in left than right though,i get up each day never knowing what a good day or bad is as i use to be able to tell with the heaviness now its gone beyond this point and i could just fall with out even knowing its going to happen,i walk around with legs given away every step i take & as i say fall or together and my legs are compeltly numb i need to use all my body strengh to pull my self up on the sofa which is a hard struggle,so i worry to go out with a zimba frame,im not sure what PD is ??? i had a MRI scan done but they only done my spine which if im honest i wasnt happy about as i wanted a full body incase it was soemthing in my head that was telling me or something different in my legs although i understand nerves run down from the back i just wanted to make sure..but that didnt happen! my results came back inconclusive? my back has gone in past & i had sciatica myself it is very painfull i understand your pain but i know this is not it & i have no problems with my back....no i never been stiff in my legs they are just jelly i have no control over them & i never know what they going to do..it sounds funny but sometimes i can walk forward & want to walk forward but for some rare reason my legs walk side ways and i start turning left or right like im a crab haha i comepltly have no control over them they just do what they want to do & i just follow ha x

    • laurie_14419
      laurie_14419 laurachic

      Posted

      I obtained my cervical MRI from last year...and see that I have neural foraminal stenosis at levels c-3 to c-7. I researched and learned that foraminal stenosis can indeed cause walking & balance problems, I also read a forum where a guy was being treated for ALS for 3 years before it was discovered his issues were caused by nerve impingments. Nowdays it's hard to trust the doctors...as they are too busy & don't take the time. One of the symptoms was "heavy legs". I was diagnosed with Parkinson's disease, but many of my symptoms are certainly not typical?! I am going to ask for a MRI of both Mid thorasic and lower lumbar.  My neck is a messsmile The problem is if it is allowed to worsen, it can be un-fixable.
  • vix66
    vix66 laurachic

    Posted

    Hi Laura,

    You poor thing! I have painful wobbly legs and the doctor doesnt know what to do either, but I have really started to push now, but I have functional legs.

    Please go back and ask the doctor to get you an urgent refural to a nurologist. Its not good enoigh that you have been left like this, be assertive and strong, this is negitively affacting your life and you are too young for that. Also ask what blood tests they have done (they should have done some) Dont wait as some things need addressing quickly. If you can find they money to see a specilist just for the first time it should be around £200 then you may have at least some idea and soon, you can then go back on NHS, but it will speed things up.

    (Just a thought, but stop all fizzy low cal drinks, it sound silly, but there are nasty things that can have awful affects on some people)

    I really hope you are ok, let me know how you get on. 

    good luck smile

    • laurachic
      laurachic vix66

      Posted

      Thank you so much vix66,its just so hard work & if im honest im drained i kind of feel its part of my life now although its not deep down & get it sorted my doctor got in touch with them & asked for refural but due to being a ''new patient'' on the out patients i do not have this ntil july end of july in fact....i heard about the fizzy drink thing & low cal & fat a nurse told me this but i never have them....its justso hard thank you so much i keep you updated xxxx
  • faye70665
    faye70665 laurachic

    Posted

    Hi, I just posted similar issues I am having in back pain.I also

    . have no control over

    my legs.T hey go where they want not where I tell them.Anyway

    my pain dr thinks I have ms.None of the other drs have said what

    they think.I am not saying that is what you have as I have other

    issue

    you dont have I am wishing you well!

    • laurachic
      laurachic faye70665

      Posted

      Hello faye, thank you so much for getting back to me, see i have no pain in my back & have no pain in my legs or anywhere,just my legs dont work..i had a mri scan on my spine which they said there is no pressing on my spine & my spine is in perfect condtion...but this last week or so i now have a real bad pain in my right arm like its dead but also shooting pain constent it huts so much & in my left i now have pains in my joints (elbows,wrist etc) i went to my local doc & asked him do you think this pain is to do with my legs & he said yes although his not very happy with the hospital as they have left me like this for 10wks, im at breaking point now & had enough of it all & life,if i only knew whats wrong i would deal with it no matter what but they have dismissed me & left me...my doctor has been in touch with them & they sent me to physio with out even seeing me my doctor is not happy as im far from being able to move about i now lost all use of my legs & just sit on sofa looking out window with 3 kids its the hardest thing to do..its breaking my heart i feel as every limb of my body is breaking away & my brain is on over time...driving me crazy! x thank you so much though im really greatful you have sent me this i really wish you all the best also i feel your pain xxx
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