Do any of you have PNH? Peripheral Nerve Hyperexcitability (constant twitching) which I am told can be linked to autoimmune diseases...

[trueman]

Hi if you can help - I was just wondering if PNH constant twitching was a symptom people suffer from with Lupus?

I have PNH which so far have been told is benign but was told to watch out for other symptoms developing. Over the last 6 months these things has been happening. I have low Vitamin D again, extreme bouts of dizziness, loss of balance, cramping and aches, a rash over cheeks and chest which comes and goes (not raised - people think I am having a major flush or blush!), sweats at night, sudden periods of really cold hands, chills (but my temperature is generally fine - if not quite low?!) and at the moment going through a very annoying period of gastric problems that is causing me to feel nauseous and need to burp a lot (but can't). And my arms or legs can go completely numb mostly at night. Oh and really really tired...

I was wondering if I should go back to my doctor and suggest Lupus? At the moment I am sure my GP thinks I am a hypochondriac and groans as soon as I walk through the door. But whatever is going on is really affecting me day to day, just doing normal things.

Any thoughts or advice would be great. Thank you for your time.

[Purpletop]

Well, I would in your place. The question you're likely to be asked is how often you're having these symptoms. If you're having one symptom a week, the doctor won't be that impressed. But if you have those frequently (whether at the same time with other symptoms or just on their own), then that's different. Good luck.

[trueman]

Thanks for replying. This is pretty much every day. Right now I am in my bed because I am so disorientated. It's just frustrating because I want to be up and doing things but the room feels like its spinning again. Is this something people with a Lupus diagnosis sometimes experience? I did spend some time in the sun yesterday...

[steadilymovingforward]

Sounds like you've just described me (I have been diagnosed with lupus)...developed twitches when my legs packed up (they said fasciculations) and had them for about a year... I have low Vitamin D, low serum ferritin, had extreme bouts of dizziness, loss of balance, cramping and aches, a rash over cheeks and chest which comes and goes (not always raised) sweats at night, sudden periods of really cold hands, chills (but my temperature is generally fine) and had the very annoying period of gastric problems that caused me to feel nauseous and need to burp a lot (but couldn't) And reflux. And my arms or legs can go completely numb at night. Oh and really really tired too!...

Don't let the doc treat you like you're mad...just because they can't establish the cause it doesn't mean the symptoms aren't real...kick some arse!!

Hope you get some answers soon

Good luck trueman and take care

Xxxxxx

[trueman]

Thank you so much for responding. I was reading your post and thought hang on did I post twice?! What a sense of relief came over me reading your post! Maybe I am not going mad. Maybe I am not a hypochondriac!

So can all these symptoms be part of Lupus too? The twitching and this dizzy disorientated sensation? It like I move my head and it takes ages for my eyes and brain to meet the position my head has turned. Sometimes, I feel like I have to think really hard to walk... I can't go on escalators, drive motorways anything that and often hold on to things. I get a rash over my face as well which I posted in the blog section because I am not sure whether it is a Malar Rash or not. I have had an inflammation in my duodenum and loads of gastric issues. There seems no rhyme or reason to the cramps and aches. Most prominent usually just under my breast/rib area and my spine hurts to touch a lot. Oh I am on a roll now! So I will stop. Thank you for taking time to answer. I hope people don't mind me posting on here even though I don't have a diagnosis. I think I will go back to the GP and ask about Lupus - and get referred back to the neurologist that diagnosed my PNH. Many thanks.

[steadilymovingforward in reply to trueman]

It could be Lupus, but unfortunately you can't take my word for it as you'll need it diagnosed by an expert, there are lots of immune disorders that mimic each other too. I get a crushing pain in my ribs sometimes and it's worse when lying down...Lupus sufferers often get bouts of pleurisy/pericarditus etc - inflammation, but it can also be down to inflammation of rib joints etc.

Really hope you get somewhere soon. Question everything and never leave an appointment until you're happy they're taking your problem seriously - until they reach a diagnosis. And if they can't diagnose they need to show that they've done everything they can and then develop a treatment plan.

Best of luck

xxxxx

[field]

Don't let the doctor fob you off. I was told by my gp that my symptoms was all in my head. It took almost a year to discover what was wrong with me. I knew there was something seriously wrong, so I just kept going back to the surgery.They eventually got fed up of seeing me and sent me to see a psychologist, who in turn sent me to the immunology department to get my blood tested and lo and behold it turned out I had lupus.

Ask the doctor to send you to a rheumatologist to get tested.

[Carolha]

I'm still waiting for my results for lupus but I too was feeling nauseous and burping a lot last year. My doctor said I'd probably got some sort of infection put me on antibiotics and it helped little. Moved area, new doctor, hence now being checked out for lupus due to a review of my history. Last week after feeling nauseous I then got servere pains in my ribs( I was previously told it was costochondritis,) it turns out I have gallstones and my gallbladder is enlarged and I'm seeing a specialist a week next Monday! Don't be fobbed off, doctors are paid by us to help us when we are suffering. Take care and hope all goes well for you xx

[trueman]

Thank you field and Carolha for responding. I really appreciate it. I think a large issue I have with all this is that I feel guilty every time I book an appt at the GP - I feel like I am constantly there and get nowhere. Having read through some of these posts I feel a little more determined to go back to the GP and suggest that I get checked for Lupus. I too have had various checks over the years but there has been no structure with it all - then again I just seem to have a variety of problems that perhaps are hard to pinpoint. And I am wary of self diagnosing. So the end result is that I just feel like a burden to the Health Centre because I am sure most people think I am a hypochondriac. But yes - I guess I should have more faith in my own body and I know I am not right. So thank you for your help and I feel a little more determined now. Good luck with the gallbladder Carolha. I will let you all know if I have any success this time at the GP's! I am guessing by some of the posts on here a lot of people experienced months/years of problems and issues before getting a diagnosis. And maybe I don't have Lupus but I think it is something that should be checked now.

[steadilymovingforward in reply to trueman]

Sometimes initial results come back negative for Lupus. Doesn't mean you haven't got it. You may need to ask for retests a few months later. Often people are diagnosed on symptoms only...again, often only under duress. And even after this, years after diagnosis, another doc can come along and try and tell you it's not Lupus after all. Of course they can be wrong. Having Lupus is doubly hard...ill health AND constant battling with the NHS. Whatever happens, no matter how far along you get...if you are not happy - fight it!....Seems unfair that you have to fight all the time, but unfortunately Lupus is not yet 'respected' as much as other illnesses are in the NHS at the moment.

[trueman]

Thank you steadilymovingforward. Every day is hard when I'm having this inner mental battle trying to believe that it is all in my head when my body seems to tell me it's not.. ! I guess the trip to GP and chat about it with hopefully the referral first and take it from there. Just out of interest has most people posted about their initial symptoms leading to diagnosis? I will check out some more posts. And why is Lupus not a respected illness? It seems that it causes enough problems to be respected.. ?! Thanks again.

[steadilymovingforward]

Hi trueman, a lot of docs know very little about Lupus, research still in it's infancy. Hope you make some progress soon xx