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?