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First neuro appointment - done!

Hi everyone,

I haven’t written on here much in recent months but I wrote a lot around New Year as that was when I was at my worst. Just a very brief summary of events as they have been for me. In December 2011, 1-2 months after my daughter was born, I started with a small area over my left shoulder blade of numb skin which got fairly frequent pins and needles. Over the course of the next 6 months, this spread all the way down the left side of my back and the pin and needles got more frequent. Over the next 6 months, I developed a numb left arm and by New Year, I had significant weakness in my left hand and forearm so I could not pick up my daughter or open anything and had to be off work sick. I started taking Amitriptyline 25mg in early January and after a couple of weeks everything was improving, I went back to work and my sensation and strength have almost returned to normal (almost!). For a few weeks at the end of January and beginning of February, I experienced a weakness in my left lower leg and foot and even a certain level of footdrop. This lasted 2-3 weeks and then improved and has totally resolved now.

I had an MRI of my cervical and thoracic spine in December 2012, which showed no cord compression (which was initially suspected). I was referred in January to a neurologist and have finally had my first appointment.

The difficulty at this point is that I’m so much better. He did various neurological strength and sensation tests and most were nearly normal. There was still a very slight weakness in my left hand and I still have a patch across the bottom of my ribs in the left side of my back which is permanently numb.

He asked me all the usual MS related questions about eye sight, double vision and continence and I could honestly tell him I’ve no problems in any of those areas. He didn’t seem to have much of an idea of what it could be at this stage, or didn’t mention anything. He said the wrong part of me had been scanned and he wants an MRI of my brain. All my symptoms are left sided so he suspects a problem in the right side of my brain.

Now I just have to wait…

It’s normally approx a 5-6 week wait for an MRI at my hospital so I know approx when it will be even though I haven’t had an appointment through yet.

I’m going to be honest to you, which I didn’t tell him because I thought he’d strike me out straight away for non-compliance. Sometimes if I don’t get home from work until 10pm and I’m up at 5am the next morning (because I work shifts) I don’t take my Amitriptyline. If I ever miss 2 days in a row, there is a marked diffference in the sensation in my left hand and forearm and even a change in strength again. It seems quick that I would notice a difference after just 2 days without a dose, but is that to be expected?

I’ll update everyone who may be interested when I have my MRI. I have my follow up appointment in 6 months in October but he said they’d probably move that forward when the results of my MRI are available. I certainly hope so!

Thanks for reading,

Natalie

Don’t worry about the amitriptyline non-compliance: I doubt there is a single person who always takes everything they’re supposed to either because they don’t want to or to fit with lifestyle or simply because they forget! There’s nothing to say that we have to take anything after all.

Whether or not someone would notice a difference after two missed doses depends on a lot of factors, but I would say that it’s quite normal for some.

It is probably worth calling the MRI department in a couple of weeks to check that they have the referral and to see if they have assigned an appointment yet - referrals can go amiss at times and you don’t want to find that out in 5-6 weeks time!

I hope it goes well.

Karen x

Hi Natalie

Just to reassure you, a waiting timeof 5-6 weeks is normal for non-urgent MRI’s. In less built up areas the wait can sometimes be even onger than this.

Good luck wit the MRI and as Karen suggested make sure the Radiology department have receieved te MRI request.

Reemz

X

good to hear update, good luck for next few appts.

x