Hi everyone, 1st of all forgive my ignorance on this illness if at any point I sound silly! My Husband has been suffering with severe joint pain & fatigue for such along time, he just thinks its the norm, as he is a Landscape gardener & it involves strenuous physical labour.
He recently (about 3/4 weeks) ago started losing his hair in patches, up to this point he has had no problems with hair loss & it is quite pronounced in places & has occurred quickly.
Last April, due to me pestering him to see the Dr, he had bloods done (he wasn't losing hair then). They came back showing inflammatory response, but the Dr didn't seem overly concerned, saying RA was marker was clear. Naproxin, co codamol was prescribed & he was sent on his way. Trouble is, he was presenting with a rash, that affected most of his body (except his face) & the Dr said she thought it was Dermatitus. No suggestion of treatment. Its very noticeable & concerning. He is terrible when it comes to visiting the Dr, being a man, he just wont go unless it's desperate!.
Last monday, again because of the alarming rate the hair loss was happening, I went with him to Dr (a locum this time) & she expressed concern that he hadn't been referred to a Neurologist or Rheummy. She ordered more bloods & said she can't be dx Lupus, but she is fairly certain it is. We are a bit perplexed to be honest, not knowing a lot about the illness (although I have looked it up now!). We wont know anything until his bloods are back next week, but I would so much apprieciate any info you could pass on, after all, who are the best to ask?! I have been tested for it, although I didn't know at 1st, as I have MS.
If you could guide me on what happens now & what are we to expect, I will be so grateful. I know there is still a chance he doesn't have it, but the Dr seemed pretty convinced, thank you so much in advance Tracey x
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Traceydc
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Sorry, forgot to say he has bad circulation as well, for a long time & pins & needles in his fingers & toes, I have Raynauds syndrome & his sounds like mine, haven't said this to him, but it's very like it. Would just like to add, he's far from a baby so to speak, he usually just gets on with it, which just emphasises how bad he must be feeling, thanks again.
Its very similar to when I was diagnosed 10 years ago - forget neuro for now and see a rheumatologist. Onsce he gets a proper diagnosis and some treatment he will improve. It is difficult but not the end of the world.
All tge best to you both
Oh dear Tracey - what a worry for you. My husband is exactly the same. He goes to the GP maybe once a year max - always about the same thing - possible skin cancer on his back (which I worry about as in a mole gone bad -or sore or very itchy). Comes home saying "see I told you it was nothing!" and then won't tell me anymore!
But your husband's problem does sound like he should see a rheumatologist as soon as possible. You can't diagnose any rheumatic diseases from what the bloods say - most can be seronegative for a proportion of sufferers. If his bloods for Lupus (probably just ANA) were negative then he probably wouldn't have Lupus - or Scleroderma - unlike you. But he could still have these or more likely RA or Psoriatic Arthritis (usually seronegative in blood) or Hughes or - from all you describe - some type of Vasculitis. It just makes things more or less likely to have positive antibodies in the blood. Nothing can be ruled out though and a good GP will refer on symptoms.
So your task is even harder if his bloods come back negative - because if it were me I'd defintely want him to be seen by a rheumatologist - bloods or no.
Thank you for getting back to me TT. I went with him to Drs I know what he's like!! 1 things for sure, I will pester them to death to get something done, it's causing him serious pain now, even though he says it's nothing, like your hubby! He's laughing it off, I could kill him myself!! They did come back negative for the RA factor, his Mum has it severely, both hips, elbows, shoulders & knees replaced, she's really been through it over the years bless her. His bloods did show an inflammatry response apparently, previous Dr neglected to mention! Locum asked had we heard from hospital for an appointment but we haven't. She was a tad miffed to be honest & said a referral should have been done. She is referring him to my neuro in the same hospital I attend to which he joked we could have our appointments together & save on the diesel, this is what I'm up against!. Thanks again for the info, just running blind at the mo x
No worries Tracey - although a neuro referral seems a bit odd to me based on the symptoms you describe. But hey - people with Sjögren's are sometimes referred to a neurologist first and even Lupus can sometimes present as a neurological disease - both sometimes misdiagnosed as MS. I can feel your exasperation with hubby and the situation. At one point mine had red eyes and finally went to our GP - who gave him drops but explained that he would be concerned if drops didn't work as red eyes can sometimes be related to RA and Uveitis. Hubby just rolled his red eyes and said "oh I'm not having any of that nonsense thanks -- bad enough hearing about it at home!" X
So like mine! Took a lot of nagging I can tell you, he's a flipping nightmare!! This was my worry when she mentioned the Neuro, Lupus is not something I am familiar with, so I have no idea what procedures they carry out. Hubby seems bemused by it all, no worrying, he's left that to me!!! I would never have considered it to be honest if Dr hadn't said it xx
Okay so the thing you need to know is that RA, Lupus, Sjögren's, Psoriatic Arthritis, Ankylosing Spondylitis, Vasculitis and Scleroderma all come under rheumatology and can only be diagnosed by a consultant rheumatologist. And they can all overlap a great deal. So the neurologist would have to refer him onto a rheumatologist if they felt that he had anything inflammatory occurring - which he probably does if his markers are elevated.
Onto another matter - have you joined the Scleroderma community here yet? If not I highly recommend it as a way of getting good advice and support from fellow sufferers.
This community is the one I love though - Lupus is such a magpie - it can mask itself as almost any disease so there are many people with all kinds of autoimmunity crossing over and always very supportive. X
I have & thank you for that! I suppose I'm a bit like my hubby, because nobody seems to know much about Scleroderma in my area, & my reluctance with Dr google I didn't look into it too much!! Every 1 here seems to put things down to my RA & MS, I mean everything!!!!!. Trouble is, being an ex NHS worker, believe it or not, we tend to brush things off, a case of heal thy self! MS was only dx because I collapsed in a supermarket, otherwise ignorance is bliss I'm afraid! I hope everything is ok with your hubby, we know how hard they can be!! xx
That is so odd because, from my perspective and what doctors say, Scleroderma is the most serious of the three - but also the most rare.
I suppose it depends very much on which is worse for you. You may have mild Scleroderma but severe MS. But Scleroderma is the one that can attack your organs so is usually taken very seriously.
Or-and I know I've said this before but you've refuted firmly so forgive me for asking again - your MS could turn out to be a rheumatic disease instead - since you already have two? I know of many who were misdiagnosed with MS but turned out to have Sjogrens or Lupus instead - equally serious but very differently treated.
The symptoms and signs of both Sjögren's, Vasculitis and CNS Lupus can present almost identically to MS. But if rheumatic they would probably respond well to Biologic treatments that would worsen MS.
It just concerns me that the Scleroderma isn't being taken seriously enough as you suggest - so makes me wonder about your medics? 30% of sufferers of Scleroderma and a higher proportion of those with RA and Lupus also have Sjögren's - which can sometimes cause widespread neuropathy and dysfunction of the large nerve fibres, autonomic nervous system etc. Same goes for Lupus - but the main specialist would be a rheumatologist not a neurologist - who may not know enough to distinguish between Sjögren's, Vasculitis, CNS Lupus and MS?
"The most common CNS complications of Sjögren’s syndrome include myelitis and optic neuritis, which are syndromes that can occur in MS. Because of this symptomatic overlap, patients with Sjögren’s syndrome may erroneously receive a diagnosis of MS. Because the treatments for MS are not only ineffective for Sjögren’s syndrome, but may actually precipitate flares of Sjögren’s disease, accurate distinction between MS and Sjögren’s syndrome is crucial. When the myelitis is particularly severe, associated with optic neuritis, or involves extensive regions of the spine, then the diagnosis of Neuromyelitis Optica should be considered. Spinal taps and brain MRIs may help in the distinction between primary-progressive MS and Sjögren’s syndrome. All patients with myelitis in the context of Sjögren’s syndrome deserve a trial of immunosuppressant therapy."
Ps I should add that someone I know a bit from the NRAS HU has just had her longstanding RA rediagnosed as primary Sjögren's - so Lupus and Sjögren's are both excellent mimics that can fool even the best doctors.
Hi TT, my dx of MS was confirmed with a LP & lots of MRI scans. When I was 1st admitted to hospital, I had 2 in the 1st 3 days, which is quite unusual. The MS was very active & a few months after dx I was given a course of chemotherapy to try & slow it down, because the onset was very rapid. 12 years later I was 'upgraded' to SPMS from the initial RRMS. I have had RA for about 25 years & to be fair, it has only become a bad problem for the past 3 years. I am under a pain specialist as well, a full body scan shown that my neuropathic pain in my legs is nerve damage. The Scleroderma became a problem when my knees started seizing up, for want of a better word! The Methotrexate helped immensely in the 1st instance, but the symptoms are now beginning to progress again & I am having it reviewed again in October. The hospital I am under for the MS is our top 1 for neurological conditions & I have to travel 50 miles for treatment. Initially I was put on a DMD which managed to control the amount & disability after relapses for 10 years. Unfortunately, they become more frequent & I have become more disabled through them, gradually I have stopped having any remission. I was lucky to see a top specialist for MS in the beginning, he is a renowned consultant & was a pioneer in some of the treatments given for it. If he hadn't suggested the chemo at the beginning I'm pretty sure I would be more severely affected in terms of my disability from the very beginning. I am declining in regard to my mobility, swallowing problems, bowels etc, but it is not unheard of for patients with autoimmune illnesses to have more than 1 of the buggers! I am lucky compared to some, they have 5+! Off on a tangent, hubby has been taking Tumeric & Oregano oil for a couple of months & we are seeing an improvement in his rash?!! May be coincidence, but so far, so good!! xx
Thanks for filling me in more Tracey - gosh what a lot you've been through and continue to go through.
When my MS-like symptoms first occurred and I was hospitalised for them - I was told by my rheumatologist and neurologist that they were active RA related. This didn't tarry and I now know that neuropathy is very unlikely with RA unless, like yours, it's longstanding and erosive.
Yes autoimmunity can pile in like buses in a permanent depot! I did read somewhere that those with both RA and MS usually have them relatively mildly compared to those with one disease. But this is clearly not the case for you and I'm very sorry for it.
My first rheum did explain that Scleroderma can evolve much more slowly than the other rheumatic diseases.
I do hope that, whatever your husband has wrong - it proves much easier to get under good control quickly. Hopefully the rheumatologist will put a strong case for him quitting smoking that he may listen to - but very glad that turmeric and oregano oil are helping the rash at least. X
I think he feels better as well because something is being done. The smoking has got to stop!!!! I hate everything about it, I can't see the reason for it, but I'm not a smoker, so as he says, I don't know how hard it is to give it up! Hopefully he will see the light! Hopefully they can succeed were I have failed! Thanks for replying, good to know others that can give advice xx
Have you looked into diet or seen a nutritionist. Diet is so important and even more so with a physical job like your husband's. He needs plenty of nutrients to keep his immune system balanced. Diet is the only thing that helped me and still does as well as exercise, but it sounds like your husband gets plenty of that. I had hair-loss, rashes, joint and muscle pains, bleeding, plus diagnosis of so many things including IBD. Drugs made everything worse for me and there are many like me, so I suspect your husband needs to be careful. We have to remember there are many side effects to drugs and these can all put the body right out of balance, too.
Hi Cann, his diet is very well managed I'm a dietitian & was a chef, so that's covered. I am glad in a way the Dr has been seen & at least we will have some options, if we can address his pain, it will be a bonus & hopefully if we can get an answer. Sometimes, just an explanation makes the world of difference I find. He has started taking tumeric & oregano oil supplements, I'm hoping these will help, but it can't harm him to try, even if they don't. Thanks for reply
That's good that you are a dietitian. I find I have to vary what I take.
I, too, use turmeric and oregano. I can't take supplements and have to be careful with oils, but use them neat in my cooking instead of supplements.
I use lots more, too, including like today drinking ginger tea.
We have to remember that the health service is a business and supplements, too, all out to make as much money as possible which doesn't always help us with our health problems because of course we are all different. When the body gets out of balance for whatever reason, it is difficult to get it back into balance - if a simple drug or supplement would do the trick wouldn't it be great! Interesting reading the item in the Daily Mail how so many woman develop Lupus after trauma (PTSD). That is when mine started after bad trauma. I hope your husband finds what helps him.
Thanks Cann, he is very active, which is just annoying him even more because of his fatigue, you know what men are like! I am at the mo nagging him about his smoking, as we all know this is 1 issue that is certainly not helping. Apart from putting the patch over his mouth & taping his hands together I am at a loss as to stop this 1!!! He'll get fed up of my pestering soon, he's nearly there!
Yes, he needs to stop smoking as it is putting more stress on his body.
I can see your dilemma, but in the end we can only help those who are willing to help themselves.
I have similar problems with my husband, but not smoking - the wrong food with diabetes as well as my own problems.
I find the best way is to explain to him what certain food does to the body, although we are all different and I realise cannot all eat the same food, but we can choose better options.
Nagging got me nowhere and just drove him to eat outside. I count to 10 when he gets to me and then say what I have to say calmly and assertively. If he listens and helps himself that is fine, but if not, it is all I can do.
I have all those symptoms and more - diagnosed with Sjogren's and Discoid Lupus. All previous posts are right about a Rheumatologist and keep fighting for appointments- a Dermatologist for his bald patches - mine has not grown back so speed is essential - this is a brilliant forum - so keep posting if you feel the need. Good luck
Things have sped up this week since my post! Appointment with the Rheummy & Dermatologist early next month. His latest bloods have come back & are still indicating a problem. He is having them done again in the morning. Seems we have gone from no help to everything at once! At least something's happening now. Tracey x
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