No Longer a Limbo-Lander

On December 22nd 2011, I had an appointment with my Neurologist to discuss the results of my MRI.  I fully expected for him to say that it was negative and that there was still no explanation to all of these horrible symptoms I had been experiencing.

He proceeded to go through the images with me, pointing out the various white spots on my brain and telling me that I have Multiple Sclerosis.

I am not sure how I reacted but I guess it mustn't have been typical because after a while he said "this isn't good news you know".  I don't know if he misread my relief (at finally having an answer) as apathy or if patients usually react differently when told they have this chronic illness (I am sure everyone's reaction to this news is as unique to them as their MS itself) but to be honest I didn't really know how to take it, after all it has been a bit of a journey.

Maybe I should start at the beginning, go grab a coffee or something as this might be a long read.

When I was around the age of 22 I started experiencing weird numbing and tingling sensations in my limbs.  I was also very fatigued but as a young mother of a toddler, who wouldn't be?

I was living in Florida at the time and after consulting my family Doctor, who had known me for many years, I was referred to a Neurologist.  He felt that my symptoms sounded like MS and did a series of tests including one where he was putting paper cups on my back/shoulder blades and asking me if they were hot or cold?  Most of the time I couldn't tell so I reverted back to "High School Karen" and guessed, hoping to get it right. I was then sent for an MRI, which came back negative (I have now come to learn that 10% of MS patients will get a negative MRI).  I was sent on my merry way with no explanation to my symptoms and after a while these odd sensations faded away and life moved on.

Over the next 20 years (Oh yes, I am a ripe old age of 42 now) I had my ups and downs with various things and looking back I wonder if some of them were in fact MS related however, about two years ago I started getting the weirdest feeling of my face going numb.

Because of a family history of heart disease and my own high blood pressure my Mum urged me to go to the Doctor (I live back in England now and I have to be honest I haven't had the best experiences with the NHS).  I put it off for a while but the numbing and tingling was getting a more frequent thing and in the back of my mind I was slightly worried about having a stroke.  Anyway, the doctor prescribed more meds for my blood pressure and sent me on my way saying if I was going to have a stroke I would have had it by now.  Fair enough.

Over the last two years the numbing feeling in my face continued and so last July I went back to see a different Doctor.  She told me I was having anxiety attacks.  I told her I wasn't FEELING anxious when it happened (how can it be anxiety I questioned when I am waking up from a night sleep with a numb face?)

Over the next few months the symptoms got worse.  My right eye felt like it was being squeezed from behind, I felt dizzy and like I was on a boat most of the time, so bad that I didn't feel comfortable driving my car.  My legs felt heavy like they were filled with lead and they tingled all of the time.  The numbness in my face spread to my lips and even the tip of my tongue.  I was forgetting EVERYTHING, to the point where my teenage children were joking that I had early onset Dementia (a joke to them but a real fear to me!).  I was exhausted all of the time and I constantly felt like as hard as I tried to inhale, I just couldn't fill my lungs with enough air.

Enough was enough.

I went back to another Doctor (thank Goodness my surgery has a ton of Doctors eh?) and I lost it.  I broke down in tears and said that IF he agree that this was all anxiety then fine, give me anti-anxiety drugs and lets see what happens.  He clearly didn't because he referred me to a Neurologist.

The letter came through the post and the first appointment to see someone was two months and there was no way I could wait that long so I decided to pay out of pocket and go private.

I fully expected for the Neurologist to treat me like the hypochondriac whack job that all the other Doctors appeared to see me as but he didn't.  He listened and passed me tissues as I cried (again), explained my symptoms as well as the fear that I was going insane. He reassured me that he didn't think I was mad (hooray) and that Neurological issues were often tricky to diagnose.

He referred me for an MRI, which was done a week later (amazing how quick you get seen when you get your cheque book out!) and then another week later I was sat back in his office getting the news that yes there are indeed lesions on my brain.

It is almost two weeks since the diagnosis and I have had a ton of emotions in the last two weeks.  It wasn't the best Christmas gift to get but because I had my mother over visiting I wasn't able to just hide under my duvet feeling sorry for myself.  I have had dinners to cook and children to entertain.

I have more tests ahead of me including a lumbar puncture and then I guess we will be looking at treatment.  I am trying to absorb information as much as I can but from what I can see MS is so different for each patient so I will just try to take one day at a time.

I decided to start this blog so that my thoughts, fears and feelings can be expressed here.  I am very conscious that I don't want to drive my friends and family crazy.

Anyway, enough about me for now - how are YOU? ;)
x