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Losing hope

Hi. I am 44 Years old.

Since i was a child i have always been itchy, I would tear myself raw in order to stop the itch. In my teens i found that Piriton kept this at bay most of the time.

But this is only the start......

In my twenties i started physically suffering in multiple places.

My right hip always gave trouble, which i have now in both hips.

My neck and shoulders were always stiff and painfull.

As time went on i developed tennis elbow, lower back pain, severe fatigue,IBS.

At night i would shooting pains from shoulder to my hands, sometimes in the legs.

I would wake up with no feeling in my hands, and would have to turn alarm clock off with my chin.

For the past twenty years i have suffered with these symptoms with more symptoms developingas time goes on.

For two years now my wrists have given severe pain, so bad i cant lift anything with them.

Recently i have been getting plantifacitus, along with alopecia.


Twenty years i have been into the doctor, I have tried every painkiller and anti-inflamatory going.

I have gone to acupuncture, Various massage treatment.

It took me 5 years to finally get into Rhumatalogy ,As my bloods never showed anything, neither did my Xrays.

When i finally got to Rheumatolgy i didnt even get to see a Rhumatalogist, I saw a Physio of Rhumatology Dept. She told me that It was eith fibromyalgia of i was depressed ( which i was not)

I tried amitriptyline for a long time with no benefit.

It then took me another few years to get back into rheumatology (Finally i showed a slight weak positve in my C-proten level), Still suffering still in pain. with only a shrug of the shoulders from my doctor, as he didnt know what was happening with me.

Once my ACE level was at 130, but that was short lived.

So for past two years i have been going back n forth to Rheumatolgolist.

They did all blood tests, Xrays and Ultra sounds and still nothing to be found.

I was put on plaquenil and steroids. which i dont think helpled. Except..

The steroids i think do help with muscle pains and also whenever on steriods i have no more itch, so no need for Piriton.

Note: My sister has Lupus and have always related to many of her symptoms.

So i got a call yesterday from rheumatologist he said: there i no evidence to suggest i have CMDT or and autoimmune disease. He suggested that it may be psychological,

Which is so wrong as i am and always have been of sound mind. But yes years of pain every day does wear you down.

So they have told me basically to go away , refer to my doctor or go to A&E.

They have given up on me and left me to suffer. i feel there is no help left out there.

I feel my body is failing in so many ways, so many different muscles are paining me.

I am now after so long .. losing hope, It seems that i must just suffer this until the end.

or until something crytical happens.

If i only knew what was wrong i could except it. take the right medicine, eat the right foods etc..

The medical system here is terrible, they just send you off every six months with nothing, but the pain that you feel.

Anyone out there experiencing the same , or have any idea what i have that wont show up ever.

Sorry for the long post... believe it or not it was scaled down.


Here are some links to pictures of my Rashes:




Hi Everyone.

Just a update.. I wont be able to reply here for a while,as in a few hours i will be having half my lung removed, i will get back here once recovered.

Thanks to everyone for kind word and advice


I have had operation and am at home recovering now.

Intresting thing is... They tried for nearly a hour to put in a Epidural.

They could put this in as i had so many Ostephytes going down my spine.

This im thinking may be the cause of multiple aches and pains.

And maybe indication of Osteoarthritus. we shall see.

41 Replies

Hi Dan!





You'll see from posts very many folks have been written off by doctors who have no understanding of the suffering we go through to reach a diagnosis. 💪🤝🤛

Did your bloods include ANA and dsDNA? These alone are just indicators of lupus. There are folks here who have struggled because they are negative in these tests. Plenty will reply with their experience.

Stay strong, be well xxx


Thanks for reply.

Yes have had those tests several times. Hope is not gone yet. But its getting harder.

Thankyou for kind words. 8)


Hi Dan. I’m so sorry for what you are going through. I wonder if you can tell us where you’re from and what kind of a health service you have? If this is NHS in UK then do you have a good GP you can discuss this with?

In my experience many of us are told similar things when blood is negative. But the brain and nervous system disorders don’t always show up in bloods and there are some organic conditions that the medical profession don’t yet understand so rather than admitting this - many tell patients that their symptoms are probably of the mind.

The possibilities which your doctors might not have tested you for that might explain your itching and other symptoms could be Mast Cell Activation Disorders and other still barely understood conditions.

In my case I have a small fibre neuropathy which has rampaged through my body causing many different problems - some of which are better recognised than others. There are no treatments I can tolerate but they do at least know that I have Sjögren’s and Hypothroidism for certain. The additional symptoms I describe to my doctors are sometimes thought to be functional or even anxiety related - but I don’t believe they are as I have a consistently raised CRP and high PV / ESR and other markers that confirm systemic inflammation. I too spent my first 40 years itching and struggling with relatively minor but debilitating symptoms such as alopecia, fatigue, IBS and weight gain with no obvious cause, allergies galore, dry eyes, bad teeth, GERD, vestibular problems and then bilateral synovitis, misdiagnosed (probably) as RA. No treatments have been tolerable for me so far.

So what I’m trying to explain is that you’re not alone feeling that your doctors are fobbing you off - and you’re most probably right because we know our minds and bodies better than anyone else and when we finally learn the truth it’s because it makes sense to us.

But even with confirmed diagnosis some of us, particularly those with chemical sensitivities (Mast Cell Activation Disorders) aren’t treatable. And many doctors find it easier to project their own failures onto their patients rather than concede that something is actually very wrong with us but they haven’t the time or inclination to believe us or to keep trying to get to the bottom of what is wrong.

Please don’t give up trying to find out in case there is a treatment - but if and when you find your answers just be warned that there may not be any pharmaceutical treatments that will help or that you can tolerate.

So making lifestyle changes (wholesome diet and gentle reconditioning exercises, meditation etc) looking at possible vitamin and mineral deficiencies and getting physiotherapy and looking for triggers to avoid - if you aren’t already doing this of course - is always a good idea too.


I'm in southern Ireland. My doctor is not very good for my sitution, and unfortunatly i cannot change doctor, as being on medical card means you have to stay with Doctor of the town you live in(unless you pay private)

And we live in a very rural part of country.

All blood tests never show anything, Xrays only show wear and tear.

On top of this in May they found a 16mm Nodule deep in my lung, this is too deep to Byopsy, so i will be coming weeks getting half lung removed to remove nodule.

Its a terrible way when you are actually hoping something will show up.

I wish i could find a doctor or Rheumatalogist that would fight for me and explore every possibility.

So my next move is a complete lifestyle change, to see if its something i'm doing thats causing this.

I will add i dont drink, but have been a heavy smoker for many years(in process of giving up since the discovery of nodule)

And have never been very good for drinking water, but am now trying to get 2litres into me every day now.

If i just had a diagnosis then i would have something to work on. I would know not what to eat/take and how to live my life.

Thanks for reply. ;)


Okay thanks for explaining more Dan. I went on holiday recently to Ireland and did wonder what it would be like to live there with a chronic illness - mainly because my husband loved it enough to think about relocating from Scotland!

I’m very glad you’re quitting smoking as there are two aspects to smoking that will be harming you. The first is all the obvious stuff you know relating to your lung nodule and increasingly the risk of rheumatic diseases being much more severe.

But also, if doctors know you’re a smoker it influences their attitude towards you I’m afraid. Whereas if they feel you are trying your utmost to improve your symptoms by quitting then they may well be more likely to take you seriously. Quitting smoking and taking your diet and exercise seriously will show them that you are sufficiently distressed by your symptoms that you’re taking these important steps.

So continue to be strong and do all you can to tackle your health problems yourself. That’s all you can do at the end of the day and the rest is up to your doctors. They will be monitoring your lung nodule so make sure you keep the pressure on them for answers and help.


I understand that IF i get diagnosed its possible there is no treatment or end to symptoms.

But to just know would be a direction.. i would then know what to avoid and what to take,

And i would just know ;)

Thanks Again.


I do understand this Dan I promise. I have been there and sometimes, despite my firm diagnosis of Sjögren’s - I think I’m still there a bit as some of my extra symptoms are blamed by neurologists on functional/ somatic factors when I know that it’s fatigue that is causing them and the fatigue is not functional even if they find my brain to be basically functional for a woman in her mid 50s.

All my early life I was told that my many symptoms of a connective tissue disease and under active thyroid were neurosis by my mum, and then a few times as a young mum by a particularly unpleasant GP.

Even pleasant ones I saw in my mid 20s about my facial rashes, alopecia, eczema, pelvic pain and recurring UTIs diagnosed functional things such as IBS and NSU or allergies and have me courses of steroids - but didn’t pay too much heed to the fact that my health then improved massively. I then lived for 28 years on a Scottish island so I just got the GPs I got, and later the only rheumy - who luckily for me wasn’t too bad. So I understand about not having any choice about medics and not being able to afford better testing privately.

No one ever tested my thyroid bloods or my autoimmune panel just to be sure.

So finally I was seeing a GP over my weight and she tested my thyroid and lo it came back suggesting I was borderline under active. So she put me on Levothyroxine and my hair back grew thickly. But I still felt rubbish even as the dose increased and my markers showed that I needed this thyroid hormone replacement badly.

So then, a few years later, the bilateral joint pain started and I could barely function. Hadn’t been to a GP for a year or two for myself as I’d given up on them.

But by this time the GPs in my practice were much more alert and started joining up the dots - after decades of me assuming that my many “minor” problems including rhinitis, pompholyx, repetitive strain injuries, endless dental problems, itchy scalp and awful digestion were just me! It turns out they had always known I was an autoimmuner but just never bothered to explain properly. The bloods had showed this during my 3 pregnancies.

Sjögren’s is far from just dry eyes and mouth so any rheum who says this isn’t worth seeing again.

RA isn’t just swollen joints so same applies but then it’s much more treatable and much more easy to identify and therefore taken much more seriously than Sjögren’s - which is the most misunderstood and underestimated rheumatic disease.

Lupus, I have been told, usually shows in ANA and anti-dsDNA and if you have it I was also told it’s likely that it would have affected your kidneys by around mid 40s. This was what a second opinion professor told me anyway. True or not he was a very nice man and explained that he doesn’t pay as much heed to antibodies as his colleagues.

So UCTD, Sjögren’s and RA are all the most closely associated with seronegative bloods - around 30% of sufferers have these for RA and Sjögren’s. RA severity is closely associated with smoking and lung nodules and can show systemically before it manifests as synovial swelling and erosive joint damage.

This is the stuff you may well know already or not. But seronegative RA usually shows up in MRIs and in ultrasound around your hands and feet joints if you have pain in your extremities. However it can start systemically too, particularly in the lungs - and stopping smoking is absolutely essential.

The other thing they should certainly test for, which they probably have but just to be sure, is thyroid conditions. These have their own antibodies and can also be closely linked to pernicious anaemia anx vitamin D deficiency - so if you can get your bloods done or get copies of older blood results - then you can always order additional antibody testing quite cheaply online.

Hope this helps. 😊


Hi Twitchytoes.

The one thing that has been not present is inflamation.

I have never had inflamation in the joints or any show in bloods.

this i beleive is a symptom of both Lupus and RA.

For the past 6-8 months my wrists are among my worst symptoms, I can barely use them most of the times. I have had both Ultra sound and xrays done on them, Both showing no results. Itchy skin is something ive had all my life, Only kept a bay with Piriton, However it gives me no trouble when on steroids.

Most recent development is my balls of my feet really aching by the end of ther day. They also overheat a night time.

I have been tested for Thyroid, but i believe ive only had one blood test for that.

My Brother has Thyriod problem and as posted before my Sister has Lupus.

My Mum had both Rhumatiod A And Osteo A. she died of Cancer two years ago.

Another thing i have never had that is common with Lupus is the Butterfly rash.

I have had rashes all over (usually chest) but never the distictive butterfly rash.

Could you tell me more about pernicious anaemia anx vitamin D deficiency?

and testing?

Thanks again for advice and replies.

Dan ;)


Dan I’m afraid I can’t tell you more but you can easily look them up. Some people with rheumatic diseases don’t get inflammation showing in their blood. But it’s still possible to have autoimmunity without this. Have you been tested for Psoriasis or liver problems with the itching? Psoriatic Arthritis can be often be completely seronegative. There are many possibilities but you just need to keep reading up and badgering your medics for answers I’m afraid.


Have just recently had liver tested and i believe Psoriasis has been ruled out.

as for the reading,.. by the end of this i will nearly know as much as a Rheumatolgoist ;))

Thanks. ^^

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Ha ha Dan - you wait until you know far more than any of your specialists about your conditions - that’s when it gets seriously scary!

Psoriatic Arthritis doesn’t always show up with psoriasis - ie you can have it without psoriasis.

There’s other stuff that crosses over such as Undifferentiated Connective Tissue Disease (UCTD). For some these diseases take years to show up or never really take on distinct features of one disease.

We have no answers for you here really - just offers of support and sympathy because many of us have been in similar positions ourselves.

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Hi DanDuan I have Lupus with rashes but never had the butterfly rash, yes as you say itching drives you mad I also take piriton its the only way to get some sleep. Sending my regards


would be intresting to see if our rashes are simular.

here is a link to my rash:




Hi Dan... there is always hope if you don’t give up. I went to my doctor so much... crying and begging for him to give me something. I even took my husband with me . He told my husband I don’t know why I was acting like I was crying in all and coming back so often. He took out my medical card and told me to cal the 1-800 number for mental health. I told him what if I was your daughter or your wife would you tell me the same thing. I insisted on More Xrays and blood test. After so

Enweeks he told me I had Mono and then he said I had Sjogrens which is only dry eyes and dry mouth. I found a Rhuemy who specializesd in Sjogrens . I also got a list of all my meds for the last 3 years.. all my blood test and Xrays for the last 3 years. I also did a print out of all the days I missed in the last 3 years for the same type of symptoms, which I missed over 150 days. Lastly I printed out a women’s body and shaders i. Everything that ever hit or had pain or swoll up. I took all this to the specialist and she took more test and even measure my bones weakness and density. My hair also had come out terriblely.. write down all the trauma that you had ... deaths... surgeries.. car accidents so forth. You must be your own advocate. I ended up being diagnosed with RA LUPUS SJOGRENS AND FIBRO.. retired from my job and got my social security disability. Needless to say... I got rid of my primary doctor..Keep fighting NO ONE CAN TELL YOU HOW YOU FEEL..


Thank for reply.

Yes i think smoking goes against me with Doctors/Rhematolgoists.

So after the call i spoke to my older sister(who is diaganosed with Lupus)

She told me to get a letter from psychiatrist to say im not mad.

And a lifestyle change Diet/smoking/more water etc..

That way i can eliminate i am the cause of this and it would be ammunition to throw at them.

i currently proberly know more about Rheumataology than my currrent doctor

I asked him a few weeks ago to test me for the 18 points of fibromyalgia.

He didnt know what they were.

I aslo asked him to to bloods test from C1 to C4.. He didnt have a clue.

Im sure he's a good Doctor as a general.. but for whats going on with me he's clueless, and only throw different medds at me.

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Hi Inezj.

I changed Dotors about 8 Years ago because i moved town. I assumed that files would be transfered to current doctor so he would have access to them.

I rang my old doctor two days ago to ask if my files were ever transfered to current doctor.

They told me no request was ever made from my doctors, So my current doctor only knows from what he's seen mean.

requesting all files next week and copys for myself.

I also have made notes and got copies (current Doctor) from the past few years, with a list of symptoms i took these to my Rheumatologist... they barely looked at them.

I also showed her pictures of my hair loss and skin rashes.

So as first posted i got a call from Rheumatologist. he told me no evidence in bloods or xrays, not even my multiple symptoms to support any CMDT of Autoimmune.

He suggested that it was down to physcalogical or emotional reasons.

i told him that if there is any depression/stress thats its down to 20 years every day suffering and no one doing a damn thing about it.

So I will play them at there own game and go and see a psychiatrist. And get it certified that i am of good mental health(which i am)

Then i will throw it at them.

.... Break as my wrists are hurting .....

But i am caught as to see another doctor or Rheumatologist i would have to pay.

This i cannot afford as i only work 3 days (which i struggle with) and trying to support a morgage.Wife and child is finacially taxing.

but despite the title i am not giving up hope yet as ive always been a surviver and a fighter.

Thank you for your kind words.



Take some hard facts to the psych appointment - mark up the assessment tables in the BSR Guidelines (https://www.rheumatology.org.uk/Knowledge/Excellence/Guidelines#guidelines) with your symptoms and circle in red the tests you should have had but haven't, like the Complement tests you mention (4 from 11 from the categories in the table 6 in the lupus Guideline means SLE, if there is one immunology positive test).

Or if the surgery comes before then, hand it all over with your records at the pre-op consultation.

Willing you well xxx


Hi eekt.

Thanks again for reply.

I followed links, but to be honest find it all a bit confusing.

Could you link me the exact page if possible.. not sure what im looking for.

Thanks again

Best Regards

Dan. ;)

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Sorry, the confusion's all mine ! 🤪 As much use as a chocolate teapot...

From the SLE guideline, you'll find the Table 6 with all the checks that should be done at an initial assessment for SLE (C1-C4 bloods etc):

page 12 of the PDF or...


Table 5 has the criteria for diagnosis (4 from 11 is SLE), on page 10. Not everyone has the butterfly rash, and other rashes count.

Post on the Vasculitis forum too, especially if you have photos of your rash. xxx


Thanks will go to link when I get home. I have photos will post them later also. Will be going to GP in the morning.

Have all symptoms of kidney problems. So going to get bloods done for that.

But my wrists are so bad at the moment. X


Hello Dan.... never lose hope sweetie.... you are describing all of my lupus symptoms and exactly what I was feeling before I was diagnosed with SLE twenty five years ago .... I understand what you mean about getting a diagnosis .... for me it was such a relief because I was starting to think that I was losing the plot. The rash starts out like a red slightly raised spot that spreads out in to a red raised circle with your skin normal in the middle, a bit like a small ringworm circle if you know what I mean.... i found that steroids worked for me and o was on them for years ... hydrochloroquin helped the rash ( which is inflamed blood vessels) this is an anti-malarial drug and they are not sure why it works but it does. I had the fatigue, neck,shoulder, wrist and finger pain also really itchy feet ... I had to rest up for months as well, but these things helped me go into remission. Forgive me, I might be wrong but you do sound like you have lupus to me. Keep fighting for your diagnosis ..... you are not alone hon love esti x



Was your Rash like this:



Sorry .... hydroxychloroquin x


Yeah anti-malaria drug. Been on it since last Sept.. just been took off it and weaning off steroids.

But given no ulternatives for either.

Just got told to go to GP or A&E if I have any problems.. basically told to go away and stop annoying them. ; (



Did the steroids and ant-malarials help your condition any ??? Why are they taking you off them hon ??? Are you getting plenty of rest ??? I'm 51 today ... was lucky to be diagnosed lupus at the young age of 24 ... because of my butterfly rash I was sent to an amazing dermatologist who saw me every month for over a year then every 2 month and so on until I went into remission ... went back to work/going to metal and punk gigs 😁😁 no probs until now ... a major muscle pain flare up ... going docs on Wednesday to ask for steroids ... hopefully they will work 🙄🙄 ... I'm guessing from what you have posted that you will get a lot of understanding and support from your family ... try your hardest to stay positive .... good luck xxx

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I dont think the anti-malaria drug did anythng for me, but the steriods i believe do help with muscle pains and definatly help skin issues.

They are taking me off them because they dont believe they are helping or they dont believe me.

rheumatalogy really has pushed me aside, which has really upset me.

Could do with a really good Metal gig though ;)

Steriods should work for you.. hope it does. x

Despite my losing hope title.. im gonna fight this. i have to ive got a family and home to keep... gotta be strong for them.

Take care and Thanks.xx

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Glad to hear that you are still fighting babe ... no sorry my rash was not like the one in your piccy. Get yerself out to a good metal gig ... it may not help your health but it would probably do your mind and stress levels a hell of a lot of good 😂😂😂 xxx

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My God Dan, what are 'They' treating you like? You are, VERY CLEARLY, an extremely sick man! How many people have 'Fobbed' you off....Far too many.

You don't say if you are in the UK, or not, if you ARE then maybe you could get a 'Referral', to Dr David Jane's Team- at Addenbrooke's Hospital Cambridge. Dr Jane, who is also an Advisor to Vasculitis UK- our Sister Organisation- is the leading Expert, on ALL 'things' Auto- immune, in this Country. Have you looked at the Vasculitis UK website? If not I would do so. (Don't worry, if you condition, isn't Exactly Vasculitis. The information will, by and large, be relevant anyway- surely better than being 'given The Run Around', by you own Doctors.)

I am STILL finding it hard, to believe, that you have been treated (or NOT) this way Dan. Do you have a Good GP, that you might Talk to? Or, is that, a Silly Question- yes, thought so! I KNOW, without reading any of the replies, that we all wish you well Dan. Unfortunately, if you are NOT in the UK, I'm afraid that I can't offer you much advice though. However there might still be some Help Lines/ Forums/ Organisation, available to you- maybe try 'On Line' or a local Library.

Hoping that you find, the help you need, Dan. I know that we ALL wish you well.



Hi Andrew.

Unfortunatly im not in Uk , but in ireland and yes.. ive been given the run around for nearly twenty years now. Being passed from different departments and being told i its all in my head ie.. depression.

I will check out the Vasculitis UK site tomorrow. have extreme fatigue right now and can barely use my wrists.

Thank you for reply and advice.


Dan. ;)

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You poor old thing, Dan!

You are so vulnerable if your Dr doesn't know what the heck you're talking about - can you get [yet another] Dr?

looking back at it, and having heard your history, I didn't realise how lucky I was to have a good Rheumy. He had been treating me after my two brain tumours and he noticed that I looked ill when I came in for a routine check-up and said (flatteringly) "hallo again, John - crikey, you look like shit - come in on Monday and I'll get a bed ready on my ward and let my team [of young trainee Doctors] work on you" and they did for two weeks, then one identified it as Lupus and it was all downhill from there!

Once identified, they could treat Lupus, which they did, I didn't know that Lupus was still rare enough to confound the medical profession, and I didn't know it made you itch - I've just worn out my third back-scratcher! and my joints ache so much I can hardly walk, but my GP treats each symptom individually "YOU'VE GOT SKIN PROBLEMS? - HERE'S SOME SKIN OINTMENT" and so on, so I'm not surprised at your lack of diagnosis!

Good Luck


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Hi John. No unfortunatly i have to stay with the doctor of our town , when on medical card. You are lucky it seems you have a Good Rheumatologist there.. send him over to me ;)

Thanks for post



Post the rash pics on the Vasculitis forum - there are a few 2 in a million illnesses that even Rheumatologists wouldn't pick up, and don't show in bloods, but can include lung nodules. We're rooting for you here in the UK! xxx


Will do. ;)

Thanks a million.

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Dear DanDuan,

Did you manage to, look at, the Vasculitis UK Website? Having read, one of your answers- Do you HAVE to stay, with the same Doctor(s)? What Happens, if you don't? Sorry for all the questions Dan. Sorry but 'Common Sense' says that If you are Really Suffering AND, your current Team, can't help you Surely you can, ask for, change...Can't you? I confess to knowing absolutely 'Bu--er All', about the Health Care system in Ireland. This may, very well, NOT make a difference but are you actually Irish? (I only wonder if 'Nationals' might get, some sort of, priority.) If I asked you 'How are you feeling?' would you send me an Assassin- better NOT ask then!

Seriously though, I know, that Everyone Here wishes you well Dan. You are, in my Prayers too Dan- I am a 'Confirmed Christian' and attend Church, most Sundays. I'm NOT, trying to, tell you what to do honestly but do you have a Faith? I certainly find it a 'Help'.

Sending my, very best, wishes Dan.



Hi Andrew.

Yes I posted rash pictures on Vasculitis UK Website.

Because i am on Medical card (public health) you have to stay with Doctor of the town you live in, Unless you pay privately (50euro ago)

As for Origin, I am originally from UK (LIncolnshire) But have been in Ireland now for 22 years.

As for faith, i do have faith but I am not religious.

Thank you for your kind words and advice ;)

Best regards

Dan. 8)



Hi Everyone.

Just a update.. I wont be able to reply here for a while,as in a few hours i will be having half my lung removed, i will get back here once recovered.

Thanks to everyone for kind word and advice.



Wishing you all the best for your operation.... take care xxx

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Thanks ..had Op very sore,, but worst over now... on the road to recovery.x


Good god... What a horrifying sounding thing to have done, DanDuan. Blessings and many warm thoughts go with you through the op and your recovery.

P x


Thanks. had op yesterday.. plenty morphine keeping pain at bay.

can only get better now.;)


So. . Im 7 weeks now since operation. . Hoping to go back to work next week.

The same pains and aches are still there.. my only hope now is something to show in bloods.

I had bloods done just before operation.

MVC was high. After checking up on it. This suggests my vitamin B12 is low.

Does anyone know if low B12 has any connection ??


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