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Just seen my Nuro - this is hwat happend

New diagnosis and before diagnosis
#1

Ok so this is the first time I have seen my Nuro since Septemeber and since I was let out of hospital.

I was actually quite suprised she was really nice to me. I let my wife do the talking as me trying to explain I forget enough as it is.

I have really bad reflexs which hasnt changed and my toes dont go up or down on the physical which caused conspiracy last time, My twitching is at a minimum but my problems have leveled out now so I am continuely crap not up and down.

She told me to look up CFS and has given me some pills to help with fatigue, ill let you know what they are when I pick them up later, All I know is it begins with A and I can take them after 2 pm. (i think they are a high dose of redbull really)

She also told me that we will get to the bottom of this as we both explained its very hard and its not like we can join support groups for help when we dont know what group to join, she was understanding as could be for a Nuro that probably sees this alot. I am not her typical case. I also explained about my counciling and how its not related, she believe my bouncy legs are due to stress but there is definately something going on for me and is putting it to ongoing symptoms of inflammation until we know more.

So the outcome, I will be needing another MRI, I am going back down the hospital later for lots of blood tests. (I came home as didnt want to wait 2 hours!)

B12, ESR, HBA1, Liver function Test, Serum Electrophresis, TFT1 Suspected Thyroid Diesease, XTFT Thyroid Function Test, CRP C Reactive Protein, FBC Full blood count, Immunoglobulins, LDH, Folate, Urea & Electrolytes, ACA Anti Cardiolipin, TPO Thyroid Antibodies, ANA. (should be fun, as long as I am left with enough blood to get home again)

And she also signed a form to allow me to scuba dive, I havent done this since it began, but with the stipulation I dont reach depths that will cause decompression. I wont be able ot jump in but as I am already qualified it means I can put the kit on in the pool.!! finaly something to look forward to.

I feel good something is happening but bad knowing it will still be ongoing for months but its all possitive really, she wants to help, she can see I am struggling and is redoing all the test to compare, I cant complain.

So there you have it.

#2

I should also add my wife asked has she ruled out MS and she said no, at this point it could be MS

#3

One piece of advice, don’t try and play your guitar under water!!! Good luck with the tests.

#4

Thanks and no I dfinately wont be doing that! My wife brought me the Martin I always wanted as a get out of hospital present, it sounds a dream.

#5

Or sing underwater… Best of…

#6

Amantadine? Fingers crossed it works.

Great news about the scuba diving :slight_smile:

Good luck with the vampires!

Kx

#7

Yes Amantadine, not sure if it is any good, I actually didnt go get the blood test or pick up my pills, ill go back tomorrow, instead we signed up to our local scumba school and booked in for a fun pool dive as we have a 5m olympic pool about 15 mins away. cant wait. Life isnt over until I stop breathing!.

And you can talk underwater quite clearly infact and if you hit an air pocket you can have full conversations whilst under water. so theroputic its great!

#8

It helps some people. I’ve done better with modafinil, but that doesn’t work for everyone either. The company that cracks neurological fatigue will make a mint!

Enjoy the dive - MUCH better than blood tests :slight_smile:

Kx

#9

Hope the meds help Tom. Glad that you can scuba dive again. Life is definitely not over! Good luck with all the tests! Teresa xx

#10

I was speaking to the owner of the dive school who told me that a guy who used to dive with them could only walk for 4 months of the year. He would go on holiday to a lake in swizland where he spent 2 weeks diving 3-4 times every day, after his Dives he could walk for 4 monthd but then it would kick in and he couldnt so he does this holiday every year and is looking at moving out there. I think water theorpy is great but scuba diving requires you to continuiously breathe as you cant hold your breath as your lungs will pop but sooo ultimately controling your breathing and being underwater weightless I am hoping this will goive my body what it needs.

Its funny that looking at all the meds she has given me are all for MR or other but MS is the only continuous thing mentioned on any of the tablets so i think she is trying to help treat me before diagnosing which is great.

Thanks all.

#11

Hi Tom, I am glad that you seem to be getting somewhere (wish I was too).

When you dive you are breathing 100% oxygen under pressure. You can also get this from hyperbaric oxygen therapy which is offered at some MS centres. I have spoken to some folk with MS who find benefit from the treatment.

Regards

Moyna x

#12

Thanks Monya,

Thats very helpful to know and I can only hope it helps me further, if not its still a bit of fun whilst I still can.

#13

Just had a phone call from the Hospital, MRI scan is booked in for the 26th at 9.20 thats like less then 2 weeks OMG. HAd my bloods done today so I expect she is now like well up for finding out whats wrong, I dont like to seem bragy or anything at all but with all the long waits e.t.c I feel really lucky to have my Nuro, I think she final gets it. Well we will see what happens still.

#14

What martin did you get?

I played a 1930’s R-18 at a guitar shop once, broke my heart to hand it back to the owner afterwards.

Back to neuro’s,

I do find they are not all people friendly, like gp’s. But mine like yours is very helpful.

Darren