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Stuck in limbo!

I can't remember the last time I was able to walk properly , it was so long ago. With what began in the begining as a damaged cartlidge some 8 years ago , it moved on to different  problems to what it's current version , which I've had for the last 2 years , of a pressure sensation in my inner thigh groin area which has caused my right foot to point out to the right instead of point forward like my left. This causes my stepping to be more like a Spanish lottery of staying on my feet rather than a step.

  So a diagnosis? Well i've had the leg, back,hip and head MRi'd over this time .I try to explain the sensation to Dr's and I'm currently at the door of neurology. I say at the door , but it was April 2011 when i was last seen . We discussed my head scan and he couldn't confirm it was MS but he didn't say it was clear either . A lumber puncture would confirm it apparentlly . That was 28 th April 2011. I've rang , i've badged my Gp etc , and don't seem to be getting any further forward.

  My leg is a mess . Walking against it's joints for so long with my leg pushing out to the right has caused both my hip joint and my knee cap to crunch and click against itself . The leg muscle in my right leg is non existent and so I have to pick my leg up to dress myself and move around.

 Mentally I feel worthless and alone . i can't talk to anyone about my impending sentence . Being of once sound mind , its ground me down . I struggled to get through xmas and begged my GP to allow me to have some sort of counselling so that i can make some sense of the madness , but as always, that takes time as do everything else

  I push and push for an answer all though i don't really want to know the answer as i'm so scared of what is on the horizon !

Is it normal to be waiting so long for a large needle to be put in your spine ?  

helloand welcome

 

could you ring the neuro's secretary and see if you are on the list for a lp.  my neuro said that i would have one but then changed his mind.    its very hard, i know not knowing whats wrong and maybe whatever it is you're not ready to deal with it??

i think the medics dont appreciate how hard it is being in limbo and not having any answers or answers that dont seem to fit.

maybe they couldnt confirm ms because you've not yet met the "mc donald criteria"  if you google that it may make more sense to you, i would think that he would have told you its wasnt ms if your scan was clear but im just guessing, who knows how their minds work.

why not ring the neuro's secretary tomorrow so that its not on your mind all weekend.

they are lots of us in your position, so any questions please ask.

best wishes

mandyhappy2

Ladies. Thankyou !

  Since finding this forum and site ,it's been a steep learning curve . I had no idea about the links of depression associated to MS and the Mcdonalds criteria is new to me too!

   The Lp has been my fault for not wanting to travel into London and not have it done there ( a friend was on the tube of the terrorist attack a few years back and i'm genuinely scared to travel in to there....)I think Stevenage hospital is a big enough hospital to have it done but it's my fault for the delay.

 When i rang the day before yesterday to ask what was going on , I got the impression he was going to try a bit harder for me , when I told him how it was making me feel. 

  

hi dave,

glad you're getting help from this site.

i know it was/is a major help to me.

there's also a post on here somewhere about the new procedure for lp 's

hope you get your appt soon

mandyhappy2

Hi Davey, and welcome to the site happy2

 

I'm glad you've chased things up again, but it sounds like you might have to keep doing it - it really isn't acceptable to have to wait so long for an LP, even if it is because you couldn't go to the hospital they wanted you to, and it's equally unacceptable that your GP isn't being more proactive. 

 

It might be a good idea to get hold of the radiologist's report on your MRI so you have a better idea where you stand. Your GP can get a copy, or you can just request it from the hospital. (You can also get a copy of your scan, if you want it.)

 

If your GP isn't supportive of this, or anything else, then please consider getting yourself another GP!

 

I hope things get moving very soon!

Karen x

Mandy.  I've researched the lumbar puncture and it doesn't look like it's changed since my last one fifteen years ago..... and that was negative ..

  Karen.. I'm going to make an appointment to harrass my Gp for next week and see if i can get my hands on that report you mentioned.

 

 Wish me luck!

Good luck happy2

Kx

hi again

ive been to gp today and found that what neuro told me and what was put in the report to my gp were two completely different things!! 

i am collecting my copy on wed/thur.

today i was actually assertive thumbsuphappy2

mandy xxx

Hi, like you, I have had to chase things up. I am in my 14th year of being pushed from pilllar to post. I`ve been in limbo, then diagnosed, with PPMS, then given a totally different dx, then back to MS and now it`s up in the air again.

I have lost faith in our local neuro dept. I feel cruelly treated and if I hadn`t badgered them again, would be forgotten, i`m sure!

Hope you have better treatment than me!

luv Pollx