Well I haven't got MS.....

New diagnosis and before diagnosis
1

For the past year I’ve been suffering with neurological symptoms in my legs. My mobility steadily decreased until I was unable to walk more than about 15 yards. I saw a neuro consultant who investigated for MS but found no demyelinization and diagnosed that I had ‘progressive myelopathy’. He warned that I might lose the use of my legs but, on the bright side, my top half should be OK as there were neuro signs in that area. I was, as you can imagine, devastated by my lack of treatable diagnosis.

A year prior to all this I had fractured my spine.

I remained suspicious that I must have MS and when I developed chest pain and tightness three weeks ago I presumed this must be the ‘MS hug’ that I’d read about on this site. Unfortunately it soon became obvious that I was ill and a trip to A & E revealed that I had blood clots scattered throughout both lungs. There was one large clot, that had caused a collapse of part of one lung, and about 40 smaller clots. I was very ill but after some hours I got out of bed to use the toilet and immediately noticed that I could feel my feet for the first time in many months, and I commented on this to my husband. Breathlessness made it impossible to walk more than a few yards for many days but as soon as I was able to go further I realised that my legs were indeed working normally.

This week, three weeks after the pulmonary embolus, I had an appointment with a consultant neuro in London and it was confirmed that all my neurology had returned to normal. The most likely conclusion is that a blood clot had been putting pressure on my spine. When the clot broke up and moved into my lungs the pressure in my spine was released and I returned to full working order. This feels like a miracle and I’m finding it difficult to believe what has happened.

Perhaps in cases of undiagnosed myelopathy the doctors should organise a D-dimer test to check for blood clots.

I am extremely lucky that a) I suffered no permanent damage to my spine and b) when the clot moved to my lungs it didn’t kill me!!

Miracle do happen.

2

Wow Friday that is some story!!!

Yes I guess you could say you were lucky in many ways… although blood clots in lungs does not sound lucky, but could have been so much worse!

It just goes to show how neuro-like symptoms can often be caused by something else entirely.

Thanks for sharing… fascinating!

Hope it is the end of health problems for you… and enjoy your new found mobility!

Pat x

3

Gosh.

Talk about going to the abyss…

“It is by going down into the abyss that we recover the treasures of life. Where you stumble, there lies your treasure.” Joseph Campbell

As for what lies ahead, I can’t say it better than Pat did!

Thanks for sharing your amazing story.

S.

4

You are one lucky lady… but what a horrible journey to of taken to get to the lucky bit.

I wish you all the luck in the world now you have got your health and mobility back.

Pip

5

Everyone has covered what I wanted to say but I still wanted to post and say thank you for sharing your story. It emphasises the point of keeping an open mind whilst in limboland. Sam xx

6

Hi

Shame you had to have a horrid time of it before it came to light

what the problem was, but glad you are feeling so much better.

Just a thought, have you been tested for Hughes Syndrome? as

it is what they call “sticky blood” and causes neurological symptoms.

Pam x

7

WOW! It must have been really scary, but what a brilliant result - and hopefully preventable so it never happens again.

I am so happy that you have got your legs back

Karen x

8

Good grief! That’s wonderful news.

Alison

x

9

Hi, wow, what a story!!!

I can hardly take it in. A miracle indeed and i am sooo glad that the clots were treatable and didnt cause you any further harm.

Yours is a tale we wont hear that often, ill bet.

i truly hope you continue to be well.

look after yourself.

luv Polllx

10

Awww xxx So very glad you had this spotted and have it treated xxxx all the very best xxjenxxx