Getting EM out there.. If they wanna listen

I can’t upload the pic just now as this silly iPad isn’t keen on letting me… Though last month I did an interview and was front page of my local paper which ranges over 4 different places.

If you don’t know me or my story before, 6 months ago I woke up paralysed, I fell outta bed and couldn’t stand or walk or even getting my self up without help! Couldn’t feed myself, hold a cup, pull up a fleaesy cover… Nothing!. I got diagnosed with EM six years ago, and at the same time nerve damage to my sensory nerves, though the nerve damage never noticably effected me apart from strength, balance, sensation was a tiny bit odd etc… Though my EM has always been off the scale. For three years I have suffered with toe/feet sores and ulcers but again, nothing major! Then at the same time I became paralysed my bottom leg and feet where covered in open pus like infected sores. My mum had to do EVERYTHING, use her full strength to pull me up (and keep me up) if I fell, I was on the floor for more than an hour because I had no ability to help them, get me up!. SEVEN WEEKS I sat, in the same place (the couch) in the same room, and my EM neurologist didn’t eventually take me in because i was paralysed? Nope, that wasn’t an issue!! They took me in over my sores! Can you believe that?

When I was admitted, they gave me a zimmer frame to use, told me to go from that, to 2 crutches, to 1 crutch to walking, though it seemed impossible… I got an EMG testing which the girl told me there than a connected nerve was flat out dead, THE NEXT DAY the neurologist eventually got round to see me, and so coldly, with no sympathy told me - your nerve damage has deteriated, a nerve is unresponsive causing this… You will likley never walk again, you will likley deteriate in the future too - I said to her that I as seeing improvements, and her exact words where ‘no, your just coping’!! Then in the same sentence told me that she discovered my EM so no point in her seeing me again! Thank god my mum was there, cause she would have never believed she said all that like she did!.

When I got home, phsyiotherapy only saw me a few times… Me and my mum through pure determination re-trained me everyday with ZERO help! I fought through EM pain, swollen feet and legs, burning and obv being incapable of walking at all!

My goal was to be at some sort of walking stage my eighteenth… AND I DID IT! I’m now walking around my house in crutches, and can do my house stairs!! Can do my makeup too!! Lol. I will likley never be un-aided when walking again, and will be in a wheelchair when out for EM pain sakes aswell, though it still shows miracles CAN happen… And doctors? There useless, only YOU can fight the battle!. The best way to describe my nerve damage is, my brain isnt connected to my feet at all, I can’t walk without looking at them otherwise il stagger and fall.

I had this story in the paper and they also got EM across well too!! YEY! So who knows? Maybe it will help one person eh? But local people have been really kind and Intrested in EM when they see me about! So that’s good, right? It may only be a small part, but it’s still something! Also, please don’t do what I did, I let EM beat me before this and took my workin legs/feet for granted… Don’t let EM do it! Trust me, when something like this happens, you truly regret!

Hope you all are well xx

What an amazing story and testament to the human spirit!! Your determination and unwillingness to give up is an inspiration to everyone. Keep going and never give up

Lauren,

Good for you for ignoring that ignorant doctor's horrible prognosis! I'm sorry you had to go through that whole experience. Dreadful.

When I did a web search to try to find your article, the search engine seemed to have found it, but when I clicked on the links none of them worked. Can you tell us the name of the newspaper? Maybe that would help us find it.

Have you ever seen an expert on Heritable Disorders of Connective Tissue or Dysautonomia? Just based on what you've been through, I would think it would be worth at least looking up info online to see if it's a "maybe". The closest real expert near you for HDCT's (eg, Ehlers-Danlos) may be Dr. Rodney Graham in London. But there could be someone in Scotland I haven't heard about, of course. Wierd nerve issues and nerve damage (& I believe Erythromelalgia) seem to often be present in these disorders.

These are good resources for info. http://www.dinet.org/ http://ednf.org/

It's just a thought. Could be completely wrong. I hope you feel better soon.

Your determination and bravery are inspiring. Things change every day and I pray there is something soon that can help you live your life.

Good for you!!! Most doctors are lazy the don’t want a challenge anf tery to help the patient get better they take the negative sorry can’t he’ll approach…you have to do you own research and bwe educated about EM most doctors in New York never heard of it…Keep up the good work

great post!

Your story is both heart wrenching and inspirational. You are a real fighter!

Great post

I have had bad experiences with doctors but not as bad as that. I agree that we have to be our own self-advocate.

I am going to a Progressive Medical Center Tues for more testing to se if I have a leaky gut. (Leaky gut syndrome) to see if that is causing my food allergies and causing my EM.

Thank you everyone, you are all very sweet!! Appreciate it. It’s private to read on the newspaper site Kentuckian, they charge you for it! Cheek right?. Though I do have a pic of the article I scanned :slight_smile: I will upload it or post it later today.

Wow Lauren you’ve never really explained your whole story to me but I had a feeling you have been through a whole lot!!! You are truely an inspiration to me and I’m so glad I met you!! Stay strong love, you have shown that you can make the impossible possible!! :slight_smile: Stay blessed Lauren <3

Btw I don’t know if I told you this but when I was younger I was also in the paper,. It was for a different reason but the E.M was mentioned and talked about a little. I’ll try to post a picture on fb later.

Awww thank you Kat! Your making me tear up lol! Could you imagine the size this post would be on Facebook though? Would be huge! Didn’t want to pester anyone with it all.
No you’ve never said! Yeah, try post it up!!



Katherine said:

Wow Lauren you’ve never really explained your whole story to me but I had a feeling you have been through a whole lot!!! You are truely an inspiration to me and I’m so glad I met you!! Stay strong love, you have shown that you can make the impossible possible!! :slight_smile: Stay blessed Lauren <3


Btw I don’t know if I told you this but when I was younger I was also in the paper,. It was for a different reason but the E.M was mentioned and talked about a little. I’ll try to post a picture on fb later.

such a wonderful discussion. I posted it to Ben's Friends Blog so more people could see it. :)

Aww thank you! That’s lovely :)!!



Scott Orn said:

such a wonderful discussion. I posted it to Ben’s Friends Blog so more people could see it. :slight_smile: