Letter to new MS Friend

This is a letter I wrote a few weeks back to a friend of a friend who has MS too.  It gives a good picture of my initial symptoms and the twisty little story that goes along with it.  Perhaps it will give you some insight into my personality too???

My first issue that led me to my GP was funny feeling feet.  At the time I had been very busy at work and I had been on a health kick – doing a lot of walking.  I don’t know how long my feet thing went on for, but one day I mentioned it to my mum and she said, why don’t you go to the doctor.  They kind of felt like… you know when you go to the dentist for a filling and they give you anesthetic and it begins to wear off… I don’t remember if it was one foot or both.  So I trundled off to the GP, one I had been seeing for a long time.  I took my then boyfriend and now husband with me.  So the GP and I are talking about it and he is yakking away and mentions MS.  My husband didn’t hear him say it, but I did.  I think he took some blood – to do an ANA.  So what do you do if you don’t know about something… you look it up on the web right?

I have a look and oh my god I have several symptoms.  So from that point on I knew I had MS – there wasn’t much doubt in my mind.  I couldn’t explain the L'Hermitte's sign any other way.  Also, the previous year (I think) I had a really frustrating problem.  I lived in an apartment with no air con, so I had a fan.  At night I would put it at the bottom of my bed.  When the fan would swoosh air over my feet it would feel awful… like they would getting hot instead of cold, I had to resort to putting my feet under the sheet.  I never mentioned it to anyone or the L'Hermitte's sign because how do you begin to explain those things?

So I went back to the doctor and started reading George Jelinek.  The ANA test was positive, when is indicative of an autoimmune disease.  But my doctor said to me (among other things) if you were my wife I wouldn’t send you for further tests.  I remember being really appalled at this at the time.  I’m pretty sure he added, that I was healthy and young and that I might never have an issue again. So I left telling him I would think about it and talk to my family.  Which I did and I made another appointment to go back and see him.  He made a referral for me to see a neurologist.

The neuro sent me off for MRIs and a lumbar puncture.  I wouldn’t wish a lumbar puncture on my worst enemy.  Little did I know that for my two babies to enter the world I would need an epidural for an emergency Caesarean section and then a semi-planned one. Both were quite traumatic, but that’s another story entirely.

Anyway, while I was in hospital recovering from the lumbar puncture the results came back positive.  I needed medicating from the shock of it all even though I had done a lot of reading and thought I was prepared.  At my next appointment with my neuro, I decided I wanted a new neurologist because I disliked the way my old one sugarcoated everything.  So I ended up seeing my current neuro.  He sent me for more MRIs... obviously the result was the same. But I felt much better with him, he was scientific, acknowledged that I had read widely and really told it like it was.  It also helps that he is known worldwide in MS circles.  

I was given a diagnosis of benign MS.  After the initial visit to Dr Kermode, I didn’t see him again for about 5 years.  I think I went back because I was pregnant – I can’t remember really.  But I know what started me down this most recent path.  I had some tingling and buzzing on my side and it worried me.  So I went in and while my neuro said it was nothing to be concerned about, he sent me for MRIs anyway.  I think I may have had 2 lots of MRIs six months apart before the latest MRI 3-4 weeks ago.  Up until then my neuro was happy that my MS was behaving characteristically (i.e. mildly).  But the 3 new lesions are a bit out of the ordinary and so current thinking is to medicate sooner rather than later. 

Currently 5 days into my Copaxone injections everything is going well.  No nasty side effects to report and I feel like the same person!!  I think people in online forums might sometimes get a bit carried away or may just be the exception to the rule and online is an outlet for them.

I did go on the strict Jelinek/Swank diet if less than 5g of saturated fat a day.  I was committed to it for 3 years or so, but while I was pregnant it was not healthy to continue and I haven’t really started it back since.  I am still off chicken and red meat, however dairy has crept back in, since my last pregnancy.  I take religiously fish oil, EPO, vitamin E, a multi and Vitamin D.  Vitamin D is especially important.  I take 2000IU of D and get a fair amount of sun and my most recent blood test 2 weeks ago, shows that my D levels are low.  I’m going to the GP tomorrow to discuss.  Apparently vitamin D plays a big role in MS, they’re not fully sure how yet, perhaps it has to do with maternal level of vitamin D while pregnant, but there is some link. 

Back to my GP and his if you were my wife thing.  I can really understand where he was coming from now.  If I hadn’t been so on to my reading early on, perhaps I could have shrugged off MS, thinking it was just an old persons disease.  I have no known family history of MS.  I could have lived the last 7 years and now, in blissful ignorance and without medication.  It would have been nice to live a life free from the lurking of MS.  Unfortunately it was not to be.

Not to be indeed... Back then and now I'm just not the type of person who can erase info that can play a big role in your life (hell I can't even forget info that is totally irrelevant).  I can't help it - I'm a researcher, I want the answers.  There is just no way I could have not had the tests for MS after my GP had put it out there.  

So yesterday was a milestone.  Twenty eight doses of Mr C.  It's a milestone in that I had to go and have my prescription filled and get another box of 28 doses. 

Ryan was away last night, which meant that I had to give myself Mr C this morning.  No problem.  I just did it.  I didn't waste any unnecessary energy worrying about it even though it was going in my thigh, which hurts a little more and has come up in welts the last couple of times.  

No welts.  Yay!!