Can anyone help I have many symptoms of Lupus, my daughter tested positive for lupus but was told to go home and get some sleep and she would be ok.
Do any of you suffer with pins and needles in your hands and feet my daughter was in Ikea this morning feeling light headed and then got the pins and needles in her hands and feet.
Thank you for taking the time to read my post
Hello onamission
Personally, the fact that the Dr has simply turned your daughter away after being investigated for lupus, testing positive, and then told a good nights sleep will sort her problems out is not quite the treatment one would hope for.
I would certainly take her back (to see a different GP) for a second opinion.
If it is of any help, I too have pins and needles in both hands and both feet. I wake up in a morning and my feet feel like two blocks of wood- numb from mid foot to the end of my toes.
I wake up with 'tingling' in my hands and a very achey, heavy feeling. My hands not so much every day, but certainly my feet.
Still awaiting diagnosis.
Follow up with rheumatologist on the 9th.
S x
Thank you for your reply and for taking the time to tea my post. It was the rheumatologist who sent her away and told her to get a good night sleep her GP has been fantastic it was him who ordered the tests and got her a emergency appointment with rheumatology. She lives in Newcastle I'm thinking of paying for her to go private but also think rheumatologist are in a league of there own like physiologist
Hi onamission , I'm very disappointed to hear that your daughter has been dismissed like that after being diagnosed with lupus. There is a lupus specialist in Newcastle who she could ask her GP to be referred to. Her name is Dr Bridget Griffiths and she is at the Freeman Hospital.
Thank you so much Paul I will pass on this information on
Maybe of interest to both of you to know that I have had pins and needles in arms legs and face for five years now. My first rheum diagnosed me with RA and just shrugged about the pins and needles. Second rheum said RA no longer active and wasn't interested in the pins and needles (very painful by then!). Then, after clear positive ANA, a third rheumy said that pins and needles wouldn't be RA related unless very advanced and aggressive disease (which mine was not) so referred me for a lip biopsy. Lip biopsy 100% positive for Sjögren's. Small fibre neuropathy is very common in primary and secondary Sjögrens, as is Raynauds, which can lead to numbness and tingle. I seem to have both!
This is very interesting Twitchytoes.
Strangely enough, my mouth has been suffering due to excessive dryness for quite some time.
In the earlier days, before my list of symptoms grew ever longer, pins and needles in my arms would wake me in the night. Then, my feet began to feel 'odd' and walking became uncomfortable. I was told by my GP that I have 'carpal tunnel syndrome' in my arms and had B12 tested for foot problems - told 'all ok'. Nothing more done about this. Also, during that period I began having trouble with my eyes twitching, sticking, blurred vision and an awful achey feeling when looking up, down and sideways. I made an appointment with the optician, who said I had very dry eyes and prescribed Hycosan eye drops to alleviate the problem. I also began to struggle when eating dry foods and have terrible problems swallowing anything well without the aid of a glass of water by my side constantly. I was told that the reason I had to do this is because I am anxious and that causes dryness in the mouth and throat! And so it goes.
I also have tingling in my mouth and tongue after eating - this is apparently BMS of which there are various triggers. Again my GP suggested it was probably due to being postmenopausal, and being stressed and anxious. Again!
I might have to have a word at my next rheumatologist appointment, as I am still having all of these problems.
Thank you so much for bringing this to my attention👍🏼
Who knows, my yet to be confirmed diagnosis might be halted for further investigation.
S x
You are welcome - sounds like a strong contender to me in that case. This might be of interest to you: hopkinssjogrens.org/disease...
Thank you.👍🏼
You are within your rights to ask for a second opinion. I contacted Lupus UK who gave me advice re centres of excellence, tests to ask for and anything else I needed to find out about. They sent me videos and leaflets so I am now armed with help should I need to shout for my corner. I went back to my GP and asked for an urgent referral to University College Hospital London. He wrote one there and then. I have tested positive on ANA and ENA test but negative for DSDNA. I have also diagnosis of sarcoidosis ( in remission) and fibromyalgia. My son 22 has Raynauds syndrome, which although undiagnosed officially is obvious because of the way his fingers go yellow like someone has cut off the blood supply. He will need to get a proper diagnosis soon. Re tingling hands: I had this often it was diagnosed as carpal tunnel problem. I had one hand operated on. The tingling and numbness still comes and goes on that hand. The other unoperated hand also comes and goes. I now suspect this is an aspect of lupus as opposed to straight carpal tunnel mechanical tightening of nerve pathway problem.
Please don't be fed platitudes you know your body best of all, you have every right to ensure you are listened to and helped.
Linda
Thank you for the reply, Linda.
I totally agree, we do know our bodies the best.
Over the years I have been backwards and forwards to the GP with a multitude of symptoms - only to be told that most of my problems are related to age (yes, that old chestnut!). And, of course, anxiety and depression! It might be that I feel overly anxious, or even mildly depressed, but perhaps this is caused by the sheer frustration (of not being listened to), and the desire to sooner, rather than later, improve my rapidly deteriorating health.
Strangely enough, re tingling hands: I have always thought the reason is perhaps more than carpal tunnel, especially now my feet have joined the party. As you say, although you have had one hand operated on it hasn't resolved the problem totally. It does make you wonder re- lupus connection!
And as for your son, there is obviously something not quite right too - hoping that is sorted before too long.
Fortunately, my follow-up appointment is on the 9th August so, all crossed I will have time to continue with the ever growing 'shopping list' of symptoms and not be sent on my way with a pill and a 'see how it goes from here, for now' remark. In all fairness, the consultant rheumatologist is a pleasant man. Hopefully he might have some insight into whether other symptoms are related to my (yet to be confirmed) diagnosis!
Cheers. S x
Ah that made me smile... the familiar "age" wild card shortly followed by an ace of trumps in the depression suit. I was also prescribed antidepressants which I refused because it is like sticking a plaster over a gaping wound just so I can't see it. I was so depressed because as you quite rightly say, no one was listening to me and thinking I had hypochondria. In the end I had to think laterally. I was plagued by rashes and so called chest infections that did not respond to antibiotics. The clincher came when I had a butterfly rash over my cheeks and bridge of my nose - it looked like I had stuck my head into a furnace. Enough was enough.
So I am sorry to say I had to tell a white lie, I told my GP that my friend was a retired GP and after seeing my rash she advised me to ask my doctor if she could organise some blood tests specific to autoimmune diseases in particular Lupus. Enough said I had a raft of blood tests and here I am now with the beginnings of getting some help following positive results. I am ashamed I had to tell a fib, so much better if they had listened to me in the beginning. But my health and your health is our priority, it quite simply impacts on the quality of our lives. The GP deals with hundreds of patients we have only ourselves to consider. There is no point being a martyr we have to ask that we are heard. Thank you for your lovely reply and I do so hope you sort out your pins and needles. I wish you well for the 9th. I have my appointment in the 18th.
Linda
Sadly, it shows the levels we have to resort to for something to be done! If that is what it takes, (and it clearly worked for you) then, so be it. I am pleased you are at last being take seriously.
I unfortunately have the 'hypochondria' label too, only it is included in my medical notes - this was during my pursuit of a non-lupus related problem 20 years ago. After many constant visits over a 9 year period I was finally diagnosed with endometriosis ( I had to go private for someone to take me seriously). I was in such a bad way, I was admitted for a total hysterectomy within a week. Obviously now water under the bridge but I suppose what I am saying is, I knew all along that my body was certainly not in the best of health then and I still do now.
Thank you for caring.
All the best for your appointment on the 18th.x
Sorry, onsmisdion, my mistake.
Even worse that the rheumatologist was the one to send away for 'a good nights sleep' 🙆🏼
I'm not sure what to say after that!
Only perhaps, to add, the rheumatologist I had the fortune to be referred to was a kindly chap who listened to everything intently and looked at my photo' diary of skin eruptions with interest. My bloods at the time were inconclusive, but that didn't prevent him suggesting that my symptoms are the beginning of something autoimmune - type 111 hypersensitivity. Lupus? MCTD? Vasculitis? Not quite there yet.
Knowing your daughter has tested positive would be good enough reason to have a second opinion on the matter?
Pins and needles can be caused by a number of things. Good idea to have it investigated.
Good luck on your quest! 🤞🏼
my symptoms are butterfly rash on forehead and nose painful joints pins and needles still after having carpal tunnel done in both hands light headed balance scabs in my nose and bruising more when I'm in the sun. Was sent to see a rheumatology he didn't know what was wrong with me then he realised I had COPD and said all symptoms were down to steroids that was 8 years ago so now you can see why I'm worried about my daughter who has 2 children under 3
Hopefully, after 8 years since you were told your problems are due to steroid use you might have the good fortune to see a different rheumatologist! (I use inhaled steroids for asthma)
I would have thought from your outward signs- they would be sufficient to warrant further investigations -surely?
I think perhaps a revisit to your GP and a request to be referred to a consultant would be a good place to start- again!
Having COPD will only make some of your symptoms harder to deal with. Could your COPD be more related to undiagnosed Lupus? I'm no medic, but who's to say it's not connected?
And yes, with that diagnosis - doesn't look hopeful with receiving some help for your daughter either!
Hoping you manage to sort something soon.
x
Sadly we only have one consultant in our area and does have a bad reputation he is due to retire soon so if we are lucky we will get a consultant who cares
Not great. Sorry to hear that.x
Thank you and good luck on the 9th
Cheers, muchly! x
Sorry, onamission -can't even spell your user name correctly. Fat fingers!
Yes minniskimoo has saved my a lot of typing yes to all the above only sometimes ( don't want to sound mardy ) it quite painful in feet and hands
Sound as mardy as you like. Heaven knows, a bit o' mardy helps me at times!
I definitely had the pins and needles and often. It wasn't anything "dangerous" in my case, but it set off alarm bells in my body and made me very anxious. I now take Gabapentin and most of those symptoms are gone. Now, I still get woken up at night a couple of times/week with tingly feet. If I get up and walk around it gets better. It's annoying though.
Thank you ianrussel69 and shbaysuekirk iam going to forward this on to her your help is much appreciated
Yes it's good to vent now and again 😤
tingling feet/hands can be a b12 deficiency and thats another minefield. lacking b12 is serious but easily remedied. lupus is anather story
It is, and I am keeping a watchful eye on mine as apparently, it 'isn't low enough' to warrant any supplementation right now - 382. Few years back 750.
That, as you rightly say, is most certainly another minefield.
well i was diagnosed with lupus and have been getting steadily worse. dreadful fibro, i have 3 slipped discs so have sciatica, depression. no energy. can't walk properly. feet are stiff and have pins and needles. same with hands. poor memory, heart failure svt all the time. could go on.so ill i went to gp who ordered loads of tests X-rays for out of breath. a dozen blood tests and echo on heart.
bloods came back with b12 365. i eat very well. not a vegetarian and sorry 365 is still low. not the lowest but not good. and i am so symptomatic. everyday i feel worse.
dr refuses to treat me and i think i am going mad. all this time i thought it was lupus it seems to me like b12 deficiency which for me is worse. as i have had these symptoms for years
I'm sure you've tried this but I was told by a very knowledgeable person with pernicious anaemia some years ago, that Jarrow's Methyl B12 (order online) is the best oral version. It's what I take sometimes and my levels are around 680-700 now. I believe some even buy it in injectable form and self administer since it's very hard to overdose on B12.
Hi, im only 22 so maybe close to your daughters age... Dont understand why the dr has told her to sleep on it shes not going to wake up not having lupus.... strange thing to say.
But i do have pins and needles in hand and knees down to legs near enough every single day, my rhumy hasn't really said nothing about that so i do just have to deal with it unfortunately but i have got use to it
Thank you Leanne22p my daughter is in her 30s its as though these people are scared to diagnose like my daughter says don't want a title just treatment she finds the dizziness the hardest
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