Wishful Thinking?

Good Morning Bleeps.

I hope you are all well today and looking forward to the weekend. I am because my Mum arrives from Florida in the morning and the girls break up for a week from school. No more school runs for a while, yay!

Last night I got a phone call from a lovely lady called Shirley to invite me to come in for my Lumbar Puncture on Tuesday. I joked with her that it is the WORST Valentines Day date offer EVER! I have to go in for a 10am appointment and I won't lie, I am dreading it.

I am also feeling a little bit confused and frustrated this morning because this is all so "arse about face". You see if I had just waited for my NHS appointment (a 2 month wait to see the Neuro) then I would still be nowhere near where I am now. I would still be suffering with symptoms of an unknown illness, a Limbo-Lander. As many of you know, I wasn't prepared to wait any longer (to be fair I was fobbed off by my GP for two years as an "anxiety" case) so I paid out of pocket to see a Neurologist privately. Within two weeks I had my brain MRI and was told there were lesions and yes, it is MS.

I then asked to be transferred back to the NHS to continue my journey as I can't afford to keep paying but now I have to do more tests as a result because the Doctor needs to "tick all of the boxes". So, I get a diagnosis in December of MS based on my history (I had symptoms in my 20s and it was "possible MS" then until I got a clear MRI, which happens in up to 10% of cases) as well as my current symptoms and MRI results. I felt like I had my answer finally but now I have to have more tests. What's the point? I have MS friends who had a "normal" Lumbar Puncture but lesions on the brain scan (like me). No test is conclusive so why put myself through this? Not everyone has to have a LP to get their "official" diagnosis. I am frustrated at what feels like a backward step. Of course I don't HAVE to have the tests, there is no gun to my head but if I don't then I wont get any medication or support from the health care system.

Also, he repeated all the blood work that I just had done in December to rule out other mimics (such as Lyme) so why do them again? He already has those results. Again, have to "tick those boxes".

So on Monday I have another MRI (of my spine this time), Tuesday is the dreaded LP and Wednesday I get fitted with my heart monitor. I should get a loyalty card at the hospital (or at least discounted parking).

It has got me thinking though (and hoping I suppose). What else could cause these symptoms and also show brain lesions? I am not finding anything on Google, everything points back to what I have already been diagnosed with and that is MS. I can't help thinking though, "what if?" "what if the initial diagnosis was wrong?" "what if this is something other than MS?" "what else could cause all of this tingling, numbness, vision disturbance, fatigue and everything else?" "what if this will just all be a bad dream and go away?" I wonder how many other people go through this? Hoping that it is a mis-diagnosis and that it will all just disappear.

What if all of the rest of my tests come back normal? Where will I be then? Right where I am now I suppose, which is with no medication to help the symptoms and no MS nurse to turn to. If this does happen do I seek out an MS specialist for a second opinion? How does one do that on the NHS? I have no clue. I feel like I am dangling here a little bit with no guidance. I am worried that my Neurologist will send me away with my "bothersome symptoms" as he so kindly put it.

If that does happen then what do I do next time something else goes numb or when I have that bothersome little symptom of going BLIND? Deal with it? Man up? Stop moaning and just get on with it? Yes please, I hear you shout!

I guess I am just nervous about the test itself (not a great Valentines gift is it?) but more so I am afraid to get the results. It would be great if they all came back clear of course but it still leaves me with a dodgy brain MRI and feeling unwell every day. I guess it would be nice if I just woke up to find that this had all just been a very bad dream, now THAT would be really sweet.

So enough about me, how are YOU?