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What Next?!?!

Hi All

Had neuro appt yesterday, he is absolutely lovely!!! Explains everything which makes a change.

He said I have Definately got MS but he needs to do a couple of more test as he thinks there is a possibility that I have Devericks disease as well, as there were a couple of anomalies in scan that he hadn’t seen before and needs to rule this out, as apparently it’s very rare and he’s not come across it!!!

So got to have another lumber puncture, blood test and be admitted to neuro dept for some brain test (not a scan). Just my luck it will be this as well.

Or else it the MS taken hold really quick!!!

I am absolutely shattered today but got to go to GP in minute as she made appt to be updated on what neuro said.

Thurs OTs are coming out, so have started compiling list for that.

Sorry I’ve rambled again,

S xxx :slight_smile:

Really pleased you got a good neuro - makes the world of difference!

Did you means Devic's disease (also known as NMO)? It's often confused with MS, but they respond to different treatments so it's definitely best to be sure which one it is. (You won't have both of them.)

Good luck with the tests - I hope you don't have long to wait to get a firm answer.

Karen x

Hi Sarah

It's good your neuro is taking things seriously and trying to rule out Devic's disease (NMO) as the treatments for MS and Devic's do differ. I recently had bloodtests for it which came back negative thankfully. My neuro sent me as he thinks I had an episode of spinal inflammation and wanted to rule it out.

Good luck. Hope the tests come back negative- Devic's is quiet rare and a bit harder to manage (there's 2 dedicated neuro departments in the country one's up north Wirral or liverpool I think the other is oxford).

Let us know how you get on

Reemz

X

yes that’s what I meant Devics, he said it was very rare but he needed to test for it as there were a couple of anomalies in the scan that he wasn’t happy with. Also said it was very rare and he had never seen it. Would just be my luck!!!

If that is negative must certainly is MS. I’m not going to look up Devics as don’t want to scare myself. Just focusing on the ms side.

I’m not looking forward to lumber puncture. GP did the blood tests today I have never had so much blood taken and have a wonderful bruse.

I think I’m going to have a pj day tomorrow as am absolutely knackered and hurting so much after having two days of running around and have OTs coming Thursday.

I really hope the test is negative!!!

Sarah xx

Hi, good luck with the tests. OTs, to my way of thinking, are the best thing since sliced bread! Their sterling work in knowing what`s needed and getting it done asap is remarkable!

luv Pollx

I'm sorry you have joined the club, Sarah.  I am glad that you get on well with the neurologist and feel you are being well looked after - that makes such a difference.  I was checked out for Devic's too,  just to be sure. I too was told this was most unlikely to be positive, as it is so rare, but they like to be thorough.

I hope you get a good night's sleep after all the excitement and chill as much as possible tomorrow.

Alison

x

hiya…so pleased your neuro is on the ball and covering all possibilities…hope the test come back ok and you get some clarification as to what It is…and good luck with the OTS too…I think a pj day is def in order for you…chill out and try to relax if you can…
e

Hi Guys

Hope everyone is ok? Have compiled a list as long as arm for OTs tomorrow.

Knew I was going to suffer today, been very jingly, dangly today so yes have had a nice relaxing day and now gearing up for the boys to get home, joy.

S xx