Waiting for answers

My MRI was back in June. June 17th to be precise. I was in the machine for 45 minutes whilst my brain and c-spine were being imaged.

Four weeks later I still hadn’t heard anything – I called the neurology secretary but there was no answer. I left a message but no one called back. Eventually around week five I managed to speak with someone.

I was told that my neurologist, busy man that he is, wouldn’t be looking at my results until the first or perhaps second week of August.

I wasn’t to worry because anything troublesome would be flagged and I’d have been contacted immediately.

Here’s the thing: a seven week wait?! Seven weeks? Even after he’s reviewed them I’ll be left waiting for a letter and a follow up appointment.

I have four more scans in the pipeline, a referral to an infectious disease doc and a lumbar puncture on the horizon. If there’s this long a wait in between things it’ll be a good 18 months before I’m receiving any kind of treatment surely?

It then occurred to me that I could obtain a copy of my MRI results myself. I filled in a form, attached proof of identity and paid £10. They arrived within five days and not only do I now have the actual imaging, I have the radiologists notes.

So what did my 45 minutes of claustrophobia find?

  • A benign brain lesion
  • An air pocket in my nose
  • Cysts on my tonsils
  • Two bulging discs at the base of my neck

But this scan had been marked as nothing to worry about. And honestly, the above things are fairly common. Benign lesions are often found in patients with Lyme and MS. Some even say a lesion could represent a migraine. So I’m not to freak out about it.

I’m.not.to.freak.out.about.it. It’s only one right??

I am concerned about the discs though, they are likely adding to the weakness in my arms and the tingling in my fingers as they are pressing down on a nerve.

I’m intrigued to see what the neurologist reports on. It’s not unheard of for medical professionals to skip information they don’t see as ‘relevant’.

In my quests to better understand my body and speed things up I also ordered another private test. A full blood work this time. I know this could have been done on the NHS but my GP was on annual leave, any other doc would have me jump through hoops for it, I’d have had to wait for an appointment and then wait for the return, then constantly call my surgery for the results. And I’d have had to ask for a copy from them.

With Medichecks, I ordered online, the kit arrived, I had my mum draw the blood (she’s qualified) on a Tuesday and I had results on the Friday. A full report with comments.

So what did this test find?

  • Low B12
  • Deficient in Vitamin D

These two are major players and also common in Lyme patients. I need to do something about them pronto. Diet isn’t going to do a whole lot by itself. So I’ve spoken with a GP at my surgery (not mine unfortunately) and she asked me drop the results in. Looks like I may be lucky enough to receive the prescription dosage supplements. Yay.

Having my results and keeping track of everything means I’m more in control. If I know what I’m dealing with I can make sure I’m doing the right things to help.

So the message here is this: if you can do something to help yourself, do it. If you’re not sure if you have choices, scope them out. Ask people to help you and don’t be afraid to take control.

More often than not, when visiting your doctors surgery the GP will ask you “What can I do for you?” and that’s when you should be able to tell them, confidently, what you need and why.

In the mean time I’m fighting whatever bug it is that’s going around atm and am struggling with a fever that comes and goes as it pleases. I’ve written this from the airport as I await a flight to Dublin though – I won’t let an illness keep me from a wedding and a camp reunion! When you’re long-term sick you have to keep going. A day or two housebound is necessary but I can’t spend too much time resting – I’ll go mad!

Action plan to follow.

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Author: Rachel

Communications Exec by day, TV show addict by night. Fighting #LymeDisease 24/7. Postgraduate student at Brunel University, writing my way to a Master's degree in Creative Writing.

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