Back in Wonderland?

Hopefully you will know my story if you read my first blog.  You will be familiar with how I was fobbed off by Doctors until I paid out of pocket to go private and finally got to a diagnosis of MS on Dec 22.

Well, when I had that follow up appointment (privately) with my Neurologist he realised that although he had the results of my brain MRI (which showed the lesions) he didn't have any for my spine.  He re-read his notes and realised that it was his error and that he hadn't actually ordered the spinal one, only one of my brain.  He apologised up and down and said he would need to re-do as he felt that my leg heaviness and limb symptoms may be as a result of spinal lesions.

It was at that moment I asked him if I would need to pay again for the test as I was self-funding. He said that he hadn't actually realised I was self-funding and that he had probably saved me hundreds of pounds. He went on to add that he would transfer me across to his NHS list and see me in clinic, I felt that finally I had someone on my side.

Yesterday I went to see him, armed with a list of new symptoms and to find out what the next step is. He explained that they have to run all the tests again (through the NHS) I guess almost ticking off the boxes to fit the protocol to diagnosis (he said it gets tricky with someone that starts private and then goes back to the NHS).  He said that they have to "gather the evidence" and satisfy all the steps so at this point I am at an official diagnosis now of "Probable MS".  Fine, I can accept that.  There are rules and protocol, I get it.

What I don't get is this; Once I do all of these tests and if I get to a diagnosis (again) of MS he said that I need to prepare myself for the fact that I probably won't fit the criteria for the DMD's (Disease Modifying Drugs).

So excuse my graphic choice today but it does accurately portray how I am feeling.  Screw you medical system.  I am fobbed off for years, go back and forth to finally get a diagnosis and then my Doctor jumps back on the fence.  I need to go through more tests, including having a needle in my back to collect spinal fluid (no small thing for a chicken like me) and then after all that IF I do get an answer I won't be eligible for medication.



Until when?  How rubbish does my quality of life have to get before I meet whatever the target is?

Where does this leave me? Am I officially back in Limbo-Land?  Do I get my hopes up that I am not actually a member of this club that nobody wants to belong to? Am I back to facing a name-less enemy (even though I have already been told I have MS once)?  Does it even matter though as I don't get the ammo to fight it because I "probably won't fit the criteria"?

What does this mean?  Is this IT?  I have to feel like this all the time?  I feel like I am going CRAZY.

So last night I was beside myself as once again insomnia kicked in at 2.30.  I lay in bed thinking "what if".  What if the rest of the tests come back negative?  If he is no longer willing to diagnose me based on the brain scan, symptoms and history as he did in December and the rest of the tests come back clear, then what?

He still thinks this is a neurological disorder as I have had every blood test under the sun, ruling out other mimics such as B12 deficiency, Lyme etc so in the early hours of the morning I Googled; Neurological disorders that mimic MS.

Nothing fits my symptoms except something called Fibromyalgia, although apparently this doesn't show up on an MRI and I have something on my MRI.  Also, it just doesn't quite "fit".  Am I grasping at straws? Uugh I am soooo confused and sad.

I have had many facebook messages from other MSers who took YEARS to get their diagnosis and I am so worried that I will be in their shoes.  I just want to KNOW.

Maybe I should change my Blog title to My Journey Through LaLa Land because that is how it feels.  I am sure there will be Limbo-Landers who can relate to this Blog today as well as MSers who may have had the ups and downs to diagnosis.

I am convinced that it is not only the disease that causes the 75% depression rate but also the way we have to struggle and fight to find out what the heck is going on with our bodies.

So where do I go from here? I will do all the stupid tests and regardless of whether I get an answer or not, drugs or not, I will continue to be fabulous and live my life, enjoy my family, love my sexy man, have my laughs with friends, take my holidays, drink my wine and sing karaoke.

So enough about me, how are YOU?

The Invisible Monster

Some of my friends have made the comment lately that they don't really know much about MS and yet since I have been diagnosed I have also had so many people telling me that they know someone that has this horrible disease.  The reality is that most of us come in to contact with an MSer every day but probably don't realise it because this is an invisible monster.

How many times have we MSers encountered the "but you look good" comment?  That's because most of us don't show outward signs of our symptoms, it all depends how the condition affects the individual.

My first encounter with someone with MS was when I was in my early twenties. I was living in Florida at the time and met a lovely woman the same age as me with a daughter the same age as my eldest (at the time about 3).  We became fast friends and were almost inseparable as our children played together.  We spent many days at the mall, beach or playground with our girls.

At her daughter's birthday party I noticed that her mother (who I had never met before) was stumbling around the room and I just assumed that she had been over-indulging in the festivities.  It wasn't until a few days later when I asked my friend if her mum was OK that she told me she had MS.

I didn't ask many questions but did feel ashamed that I had assumed (wrongly) that she had been drinking.  This has happened to me recently (in case you missed my previous blog) so I guess it is true about Karma being a bitch, eh?

I still didn't know anything about the actual disease or what happens in the body so when I was then told by a Doctor a short while after that he thought I might have MS I was literally terrified.  I immediately thought my life would be over or I would "end up" in a wheelchair.  I now realise (being older, wiser and better educated) that this isn't always the case and there are many different forms of MS.

My daughter recently asked me "so what exactly is MS?" and the way I described it to her is that our body has good soldiers (immune system) on the look out all of the time in our bodies to fight off any bad soldiers (viruses or bacteria).  Well for some reason some of the good soldiers in my body went rogue (bad working conditions?  Not enough pay? Too much Daughtry music or Real Housewives on TV?) and decided to turn on their boss (the brain and/or spinal column) and attack it.

These rouge soldiers attack the Myelin (insulating coating) around the nerves, which stop some of the messages from the brain getting through correctly.  These soldiers can attack anywhere in the brain/spinal column, hence the reason why the symptoms are so varied and different for each person.

Most of my symptoms are sensory so they can't be seen, although the chronic fatigue is easy to see before I cover my dark circles with make-up.

My Neurologist told me that he feels I have a "mild" form of MS.  Of course that is good news to hear but a little baffling as these symptoms sure don't FEEL mild.  

I was talking to a fellow MSer about this and he too was told he had a "mild case", even though he sometimes completely loses his legs from under him. His advice was that even Neurologists don't understand how we truly feel because they haven't experienced it themselves.  His told me that the next time a Doctor tells me that it is mild I should grab his pencil, jab him in the privates with it and tell him now THAT is mild compared to MS! 

So enough about me, how are YOU?

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