PNH

[steadilymovingforward]

I just looked up Peripheral Nerve Hyperexcitability on a few sites as I never knew there was an offical term for twiching etc before I saw trueman's your post...one site said -

"...muscle twitches(fasciculations), cramp and cramp like feelings. In turn this may lead to muscular aches, pain, soreness and discomfort. Sensory symptoms (paresthesia) such as pins and needles, numbness, tingling and burning sensations might also be present to a more or lesser degree. Secondary to these, sleep disturbance, fatigue and an intolerance to exercise may also be experienced, though these might not become evident until a period of time after the onset of the main symptoms. All these symptoms can vary in terms of severity with good and bad periods lasting days or months. Normally the twitches are always present while the other symptoms can wax and wane..."

After reading a few I realised it basically described me when my legs 'packed up'. Yet again, when I told the docs about these symtoms, everyone of them acted like they never heard anything like it before. It obviously doesn't descibe all of my symptoms but nevertheless

Reason I'm so insterested is I'm the latest victim of a Rheumatologists indecisiveness!..My last appointment was with a locum and she tried to imply that it might not be SLE as my results are only 'weakly' positive!....It was none of her business and of course I argued the point but now her thoughts are on my record to influence other docs....

I just feel like I might end up back at square one again and I don't want to do this all over again. Of course I will fight it but I also think...can I be bothered?

Not because I'm being negative...more because I'm sick of my identity being defined by a doctor's latest 'whim'...I want MY identity back.

I told the doc...just keep me on the hydroxy and we'll stay friends (not in so many words!)...it's worked better than any other drug so you can call this whatever you want...'bad leg-itis', poorly-sick syndrome. It may not turn out as bad as I fear but actually having a label of Lupus makes doctors take your symptoms more seriously. It might be a related condition but I kind of think if it's really similar and the hydroxy works what's the point of putting myself through all those tests again?

Will have to wait and see...it's either support from Lupus Doctor's but then labelled...or free of a label but abandoned......well that's probably a litte too black and white

Just goes to show though like I said before...

it's not the pain or tiredness...it's not being believed...

...that is the worst symptom of Lupus...(or other related conditions!)

I'm going to buy chocolate now....the world is always more beautiful with chocolate

[Chapter]

Nothing like a piece of rich dark chocolate washed down with a rich red wine. . . . . hmmmm, now I have thought of something else to go with it !

[steadilymovingforward]

silly me...chocolate?...damn brain fog!...I meant red wine!!

[InSpain]

Have you ever seen a Neurologist? I do because I have very similar symptoms to those you are describing but I have something called Mononeuritis Multiplex which is part of a systemic illness called Peripheral neuropathy. Look it up on the internet and see what you think. It is something that some people with SLE get. Good luck with your Rheumy. Best wishes from here InSpain xxx

[steadilymovingforward in reply to InSpain]

Must admit I had loads of neurological tests at queens square. But will definitely look up Mononeuritis Multiplex!

Thank you

Spoons for you!

Xxx

[steadilymovingforward in reply to InSpain]

Just looked up mononeuritis multiplex and it doesn't seem to match my symptoms but thanks for the tip! Just good to be aware in case they whip my lupus diagnosis away!...either way have insisted they keep me on my meds as they really work...

Hope you are as well as you can be and are enjoying life in Spain!

Xx

[trueman]

The PNH diagnosis I got was after nerve conduction tests and EMG. A range of blood tests followed which at the time apparently revealed nothing else. However neurologist said if I develop other symptoms to get referred again because PNH can be linked to auto immune diseases but can also be benign which I think means they can't find any other reason for it. Personally I do think its symptomatic of something. Something else must be going on to cause constant twitching, cramping and episodes of numbness. And well other things are going on now.

So for me PNH must be part of something else but as you say not heard of much and even when I was in for an operation the consultant asked curiously about it and had to explain that I twitch a ridiculous amount all the time.

I hope the locum doctor doesn't put you on the back foot again. Eat the chocolate!

[steadilymovingforward]

Thanks trueman

[happysally72]

If the hydroxychloroquine helps, then surely that's proof enough in addition to pos tests, however strong or weak they are! As we all know its an anti-malarial drug that just so happens to really help with lupus. Seriously, I wonder about the competence of some doctors and they should be made aware that their silly comments are devastating to someone who lives with this illness day in day out! Also hydroxychloroquine can affect test results to a certain extent and can lower result as well as lowering the symptoms. I am with you on the chocolate -totally! Lol. I'd consider changing gp if I were you, although I know this isn't always an option xxx

[steadilymovingforward in reply to happysally72]

Thanks happysally72, I think you've really understood and put into words what's upsetting me so much...Thanks everyone else for your comments too! And v good point about hydroxy changing test results. Actually my GP is lovely ( v lucky) it was the locum consultant that made the comment...I will mention to my usual consultant my worries about what she said at my next visit.

Will be tucking into lots of chocolate today...today is my one year anniversary at work and I'm celebrating so made massive rockyroad crispie cakes for everyone at work!

Thanks everyone, take care

xxx