Hi I have Rheumatoid Arthritis - diagnosed 2 years ago this month. Came off my injectable methotrexate 3 months ago because I was experiencing polyneuropathy - which had been an issue the previous year - lasting three weeks. The first time the pins and needles came my rheumatologist put it down to active RA inflammation on the nerves so adjusted my medication, by which time it had already subsided. This time round the sensory issues have stayed and worsened. The consultant does not believe this is a side effect of the methotrexate - which he would like me back on for the RA. However when the parasthesia started 3 months ago he said it wasn’t RA because I had no swollen joints and nothing wrong with my B12, blood glucose etc. My GPs both hedge but one has done a basic nerve conduction test and feels it isn’t affecting my central nervous system. However it has settled in my feet and legs now and they feel wet, cold, sometimes burning and always tingly and numb. I am presently weaning down on a month long course of Prednisolone and at 10mg all my RA symptoms have lifted but the sensory stuff in my legs is as severe as ever - affecting my gait a little too. I have no visual disturbances and am not dizzy. My balance is always a bit off but has been all my life and I have suffered from severe depression for several months but that has lifted since I started steroids. Does any of this sound recognisable and should I push to be referred to a neurologist? My GP just outs everything down to my RA and the meds for this but I feel there’s more to it and find the crawling sensation and wet numbness in my legs more depressing than the pain. Sorry this is such a ramble!
As you already know, it’s not possible to tell by symptoms alone whether it’s MS - especially when you have an existing condition that’s capable of causing similar symptoms.
Normally, in a situation like this, I’d say anything you’ve already been diagnosed with is a more likely suspect. However, unfortunately, having one auto-immune disease does not protect against having another, and there’s some evidence that families and individuals where RA is already present may be more likely to have MS, and vice versa. This does seem terribly unfair, as you would think the chances of lightning striking twice would be less, not more.
However, if it turns out (which we don’t yet know) that all auto-immune diseases have some sort of common underlying basis, it would explain why predisposition to one might be linked to higher predisposition to others.
I really can’t advise how far you should accept this as “probably” being down to the RA, or how far you should push for further investigation.
Methotrexate has been trialled as a possible treatment for MS, with some success, although it’s not licensed as a routine treatment, because of potentially serious side-effects, which you will be aware of. However, in the event you did have both, it’s possible the methotrexate for your RA would also have had a calming effect on the MS.
MS never (that I know of) causes peripheral neuropathy, as it’s a disease of the CNS only. However, that doesn’t mean neuropathy isn’t experienced in the extremities - only that the underlying cause isn’t the peripheral nerves, but the central ones.
I’m not sure how qualified a GP would be to distinguish one from the other, but if your GP is correct that the CNS isn’t implicated, that pretty much rules out MS straight away.
I don’t know how much help this has been. Everybody has a right to a second opinion, so you could request this, but I’m not sure whether you should be asking to see an alternative rheumy, or pressing to see a neuro.
Thanks Tina - that is so helpful. I understand that only a neurologist can diagnose MS, just as only a rheumy can diagnose RA. However I can’t really see how my GP can rule out my issues as being only with the peripheral nervous system. His main point was that they are not neuropathic because if it were they were it would progress and I wouldn’t be able to know which way he was wiggling my toes. This was a few months ago mind you. He felt it must be neurological (or psychological perhaps?) and tried me on a dopamine agonist (Parkinson’s) drug for Restless Leg Syndome. Unfortunately this drug had dramatic side effects and I ended up in hospital with a suspect heart attack (chest pain and narcolepsy). I will hopefully get more answers when I see my rheumy in a few weeks time. I came here really because whenever I put my strange crawly numbness symptoms into google MS flags up first. I also live in Orkney which has the highest incidence of MS in the world and I was recently found (tested privately) that I had pretty low vitamin D and calcium levels. I’m addressing this with supplements (AdCal D) but the issues with my legs continue to rage on anyhow. I’m very interested in the autoimmune crossover and commonality because I am also hypothyroid and feel that friends with diseases such as Lupus, MS and Crohns have far more in common with me than those with wear and tear arthritis. I think my RA is very systemic compared to some though. My rheumy agrees with the autoimmune umbrella being more useful to many with inflammatory arthritis than muscoskelital umbrella would suggest. Thanks again, Mat
Hello mat. I will briefly tell you about my journey…some of it may help. I was diagnosed with psoriatic arthritis in 2007, which is an autoimmune disease for which I take methotrexate. I’m having a break from the methotreaxate at the moment. For the last couple of years I started suffering with really bad headaches, in recent months they became more regular and intense. My gp sent me for an MRI scan…I’ve actually had several scans now. The scan showed multiple brain lesions and a long lesion on my spine. I’m now diagnosed with ms, I don’t yet know what type of ms I have. I must admit it was quite a shock for me and my family. I’m seeing a specialist neuro in december. I had been suffering similar symptoms as you describe. I’m not for one minute saying you have ms but you have every right to ask for a referral to a neurologist to rule a neuro problem in or out. All the best to you
Blossom thanks for telling me your story and very sorry that you suffer from PsA and MS. I remember last year when I had three weeks of pins and needles everywhere - looking up MS and concluding, with much relief, that as I didn’t have balance issues or visual disturbances MS was very unlikely. But I’ve had this weird stuff going on for four months now and I had strange sensory issues going on well before my RA started so I have been researching additional possibilities for ages. Not that one needs any extra to RA or PsA of course but for me this weird wet numbness in my calves doesn’t tarry with inflammatory arthritis - although I obviously do have RA. I’m scared of going back on Methotrexate now without having had any kind of investigations into the sensory nervous stuff. I’m very grateful to you and others here for bearing with my issues. The severe depression I’ve experienced over the past three months has been so out of character for me and I feel it isn’t just about trying to deal with having RA - but my GPs just attach everything to this one disease I feel? Take care xxx
Hello Mat. How are you doing? If I had a choice between RA or Psa…it would Psa everytime. I really feel for you and hope your dealing with it well. I decided to take a break from taking methtrexate but nothing to do with being scared. I discussed it with my rheumatologist and he agreed with me…my joints were showing no signs of inflammation even though their painful. He said I can go back on it anytime or have a steroid injection plus I’m always in touch with rheumy nurse on the phone. Actually my neurologist wanted me to start back on the methtrexate…its a drug they used to use for MS. I’ve been taking it for 6 years, I have to wonder if I’ve been medicating the MS as well I’m waiting to see a neurologist at an MS centre in york in December…hoping to get to know what type of MS I have. So Mat!! what’s the plan with you? are you asking for a neuro referral? Have you had any scans for neuro disorders? sorry if you’ve mentioned this and I’ve missed it. Noreen
Noreen thanks. Well I’ve always assumed that PsA is as bad if not worse than RA but maybe I’m wrong? I had a lot of eczema from the age of 3 until my meno kicked off five years ago so I suppose I think of PsA as being like RA plus skin issues? I don’t think I have very aggressive RA - or rather I think mine was quite well controlled with Methotrexate but I had lots of other issues - which in retrospect were a mish mash of autoimmunities probably. So I came off it in March for a month, against my rheumy’s advice but with GP support. But after four weeks I flared badly in my hands and wrists again and had to go back on it. Then I came off it again in August because of these neuro issues. I found that I couldn’t get any higher than 12.5mg by injection without getting a disgusting taste 24/7 and my liver didn’t like it when I was on 17.5mgs for about 6 months and kept getting elevated. I was on Hydroxichloraquine too but they took me off it in March in case it was the cause of side effects - it didn’t appear to make much difference to my RA.
I haven’t been referred to a neuro yet despite having this weird stuff in legs and feet for four months now. My GP did a basic nerve conduction test on me three months ago with a set of tools (looked like a carpentry set!) and told me that, seeing as I could tell which way he was directing my toes, my problem wasn’t neuropathic. And he didn’t seem to think it was in my CNS either but I really don’t think he could tell this from such a basic test. I haven’t had any MRIs or CT or any scans at all for RA or for this numb fizzy stuff. I see my rheumy in a few weeks time and perhaps he will refer me for these and to a neuro - that’s what I’m angling for. I feel very reluctant to take any further RA drugs until they have done some proper investigations.
I’ve tried 3 DMARDs now so will be considered for the Biologic drugs but I think this parasthesia stuff might make these drugs risky because I believe there is a connection with MS and the anti-tnfs. So drug options aren’t great just now. Perhaps I will try another DMARD such as Leflunomide or Gold. I’m very lucky that I keep exercising and walk the dogs every day but the podiatrist told me that my feet are very badly inflammed with RA a month ago so I am seeing him tomorrow after agreeing to try steroids for a month to get the inflammation down. I don’t really fear pain too much strangely - I think the numbness and tingle are currently masking the pain in my feet anyway and when things get bad I just take pain killers and Naproxen.
I’m much more scared of the parasthesia to be honest - it feels as if things are crawling up and down my legs and the numbness is affecting my gait a bit because I feel as if my legs aren’t quite there to support me?
Good luck with your time off Methotrexate and I hope the swelling etc continues to be manageable.
Shall will put it to a vote Mat? who thinks which illness is worse Lol RA or Psa Lets just call it a draw. You say your gp carried out a basic nerve conduction test? with all due respect to your gp Mat he’s not a neurologist…we have specialist consultants for a reason don’t we?. Considering your symptoms, you have every right to ask for a referral to see a neurologist. I don’t know if you’ve got a neuro problem and neither does your gp…you have neuro type symptoms…they need checking. So ask Mat? Its your body…your life. Take care of yourself, Noreen
I agree with you Noreen - enough is enough re weird numb wet legs. He’s not the one constantly touching his legs to see if leggings or trousers are actually soaking! X
Hello Mat. I was just thinking…as one does Lol Yesterday My friend and I were having a discussion about health care…we were having a moan really Lol. Anyway my friend as Lupus, she’s on this excellent forum www.Healthunblocked.com it covers various diseases including RA. Maybe you could put your question on there and ask if someone with RA has been diagnosed with MS?? If you decide to Mat will you let me know the outcome please, would be really interested. PS: I promise I’m not a crank LOl. I’m a qualified nurse and my friend is a midwife
Thanks Noreen. The site you refer to is actually HealthUnlocked (as opposed to unblocked - the laxative version! :-D) and I have used it often. Unfortunately, by asking a lot of questions about these strange additional symptoms on the RA site - I have found that some of those with more advanced and classic symptoms get tetchy and doubt the authenticity of the questioner? I know this because, not only did my own sincerity get questioned on there but several other people who, like me, have a much broader spread of autoimmune symptoms - seemed to end up hiding away and only using these forums for common symptoms. So if a person had a diagnosis of RA AND MS then these people would accept this probably but when searching for where ones symptoms may fit - a few people just don’t seem able to understand that it is possible to have several conditions coexisting and think we must be making things up or can’t accept that we have RA and our new symptoms are simply part of this diagnosed disease? I do use other HealthUnlocked for my hypothyroidism and have tried Restless legs and Raynauds - all of whom readily claim my symptoms as part of their conditions and have been very friendly and supportive. But they have left me none the wiser so far - except to have acquired a better knowledge of what others have to contend with. This is how I’ve learned that some with Sjogrens, Raynauds and PsA have these conditions very severely and none of us should assume that this condition or that disease is a lighter, less worrying one to have because there seem to be degrees of severity in each that make my eyes water just thinking of those who suffer from them. I also read somewhere that if you have two autoimmune diseases such as MS and RA there is a likelihood that you will have both more mildly than those who only have one? I wonder if that has been your experience so far or not? I saw the podiatrist yesterday and he said that after a month on Prednisolone my feet look a lot less inflamed. He said that my sensory issues in legs might well be because of tissue inflammation elsewhere (further up my body probably) and that nerves take longer to repair than inflamed tissue. He said my problem is definitely not peripheral neuropathy but could be Raunauds as my toes keep going bright white and blue and my circulation seems very out of whack. But he felt I should push my GP for a neuro referral and let my rheumy concentrate on the job in hand - saving my joints from becoming deformed. Once again thanks so much for helping me. Its been very useful communicating with a person who has two chronic conditions as well. Mat x
Oops sorry I seem to have posted this twice - the one below is edited version! X
My friend gave me the link with spelling Mat…its her forum…she’s as demented as me Lol. Wait till I ring her later, You’ve given me my first laugh of the day. Sorry the HealthUnlocked!! forum has not really been that helpful Mat regarding RA & MS. It never ceases to amaze me how closed minded some people can be but hey ho such is life. It seems logical to me, that if you have one autoimmune disease then that must increase the chances of developing other similar conditions. What’s so wrong with being open and sharing…helping each other?? My friend with Lupus has APS, Sjogrens,raynards, arthritis and problems with her heart and other more personal things. She takes warfarin and lots of other meds…just never seems to be one thing with the autoimmune diseases. You ask me if I think beacuse I have MS and Psa that they are mild forms. To me the Psa is not mild…it forced me to give up my career in nursing. Joint pain that never leaves me is the worse thing particularly in my spine, I also have osteoarthritis now ( I’m 57). diagnosed in 2007. Looking back I’ve been having symptoms since my 20s…family history of joint problems. The MS is newly diagnosed so hard to know which one is causing me most problems. New problems are balance ( now use a walking stick) and other things I won’t bore you with Lol. We are all individuals and should be treated that way by health professionals. My experience of MS & Psa will be unique to me, as your illnesses will be unique to you Mat?? Its great news about your podiatrist appointment, glad your feet looking better. Excellent that he agrees you should push for a neuro referral to rule neuro problem in or out. Enjoy reading what you have to say Mat. Noreen x PS: hope you can make sense of what I’ve written, takes me ages Lol. Try to keep things short…become dyslexic since being diagnosed.
Well it’s made my week just having you and others with MS being prepared to talk to someone who hasn’t even been referred to a neuro yet. Thanks so much - I did laugh out loud at the unblocked - especially because of my recent troubles with some of the RA people - it could do with a really good unblocking from my perspective!!
Obviously I’m hoping that all my symptoms relate to RA somehow. But I think some of more vociphorous members of this HealthUnlocked community must have decided that I was aquiring new symptoms far too readily and must therefore be inventing them. Anyone who knows me would know that I veer towards over honesty and couldn’t invent even the smallest symptom - let alone numb wet feeling legs and dry eyes and white feet and fingers. And these people ganged up over a weekend to question my authenticity re Sjogrens and Allopecia and other things I have been told I have by my GPs. And by the time the moderators came back all posts had been removed and HealthUnlocked hadn’t kept a record - and I had deleted my account in a state of abject devastation at all these interrogations. So for me the HU site is not to be trusted while bullying can occur in this way.
But perhaps I also came unstuck there because I rarely mention being in pain very often at all which is why, until the podiatrist looked me in the eye a month ago and told me I was in a big RA flare up - I had just assumed I was suffering from some lesser virus or a pre-flu thing with all the aches and pains. So when a person meets me face to face as he did and tells me this is how RA manifests itself as it progresses and I’m actually really ill - I simply feel very relieved to be understood and believed.
Sorry this is a bit of a ramble again but I’ve been feeling dizzy for a few days - room keeps spinning - especially when I lie down or rise from sitting. I had assumed this was because I’m weaning off Prednisolone but a locum GP (where are the usual ones when you need them) just phoned to give me a tapering timeframe and said the dizziness sounds more like a balance/ ear thing - maybe laberynthitis and wouldn’t relate to the steroid tapering she felt. I can’t believe I’ve got something else to contend with now - I’m too embarassed to even tell my husband about this latest development! (eyes roll!)
That’s horrible that you have to contend with PsA at its more severe end as well as the diagnosis of MS - and that you were forced to quit working as a nurse because of it. Poor you. That is why I said that I thought PsA must be at least as bad as RA - because I have made three good friends who suffer from this disease via HealthUNBLOCKED (as I shall now call it!) and they email and phone and nothing that they are going through sounds remotely milder than what I’ve been through to date.Take care please. X
Hello Mat. Just been reading through your last post. In reference to Heathunblocked site I’ve never liked bullies…never mind, there loss our gain Ramble all you want, I’ve made an art form out of it Lol. I get problems with dizziness, its not nice is it? I know what you mean about locum gps…always best if you can speak to your own gp for the continuity isn’t it? Thing with my Psa Mat is if you looked at me you wouldn’t know I had it…you can’t see pain can you? I’ve just recently started using a walking stick to help with balance. Its taking some getting used to but its helping keeping me upright I suppose when I think about RA mat, I think about the people I’ve nursed who are at the extreme end of the illness, where you can see the physical deformity…I know like Psa and other illness there’s milder forms. Believe me their are people with Psa a lot worse off than me. You take care of yourself Mat too.
Sorry never got back to you sooner Blossom but I’ve been in bed sleeping a lot today as the RA flare is back. The Raynaud’s & Scleroderma Association HealthUNBlocked has actually been very useful for me over the past few days and I’m now suspecting that my issues are connective tissue related rather than neurological because I’ve become aware of my toes turning bright white daily - especially now I’m weaning off Prednisolone. I think I would have balance issues and visual disturbances by now if the parasthesia was part of MS. But I had a good talk with someone on the NRAS helpline earlier today and she made me realise that I do really want them to rule out MS before I start taking more RA meds. The biologic drugs I’m being assesssed for soon have a potential side effect of causing MS symptoms I believe. So I hope my health practitioners will agree to investigating numb icy crawling legs and feet by MRI of neck and spine before expecting me to take any new drugs.
Re the extreme end of these autoimmune diseases - my podiatrist says the same about RA and kind of deformities he used to see people with before the current aggressive treatment approach. But when I was really struggling with Methotrexate nausea and blisters someone sent me a little video of the artist Renoir painting with his extremely disfigured hands. This person wanted me to think very hard about quitting Methotrexate. But all I could see was a man who looked as though he was fulfilling his potential with a joyful gleam in his eyes - whereas I was having to spend whole days hovvering by the toilet feeling wretched despite having pain-free undeformed hands - his comment about his RA - “pain passes while beauty remains”.
It’s good to remember how much worse off others are sometimes yes - but I wonder if anyone really has these diseases mildy or each of us simply feels pain differently? I think some are more resilliant or have a higher pain threshold than others or can hack to the drugs and therefore do better than those who can’t tolerate them? I have a high pain threshold but am hopelessly intolerant of drugs. So I wouldn’t describe myself as stoical really but nor do I think my condition is particularly mild. And if you don’t feel pain much then you aren’t picking up on the messages your body is trying to give you and that can present problems too as damage occurs without us really being aware of it.
I think you’re probably just very brave for your attitude to having PsA and RA. Mat xx
Hello Mat. Thank you for your interesting reply. Don’t ever feel that you have to apologise or reply to my post I promise I won’t be offended Sorry you’ve had a flare up of the RA…hope things are improving. At least the HealthUnBlocked site as been helpful. I’m glad you’ve decided that you really do want to rule out MS…it will allow you to move forward. Now Mat!! why wouldn’t your gp agree to YOUR REQUEST for MRI scan. With your neuro type symptoms its a perfectly reasonable request for you to make. You mention Methotrexate again Mat. Personally, I may choose to go back on it but I really don’t know. If I’m honest, it doesn’t scare me to take it but does worry me. I’ve yet to read any good research that reassures me that taking methotrexate long term is safe…I’ve been taking it for 6 years. If you’ve got some reasearch I will be happy to read it. Interesting what you say about Renoir and RA I never knew that. My husband paints, I shall quiz him Lol and see if he knows. Your right! you can say there is always someone worse off than yourself if you want to. What I said to patients when they said that to me was…this is not about other people…this is about you!! Take care Mat PS: If you ever want to private message me, feel free x
Thanks Blossom. Its great having a natter to you. I understand your concerns about methotrexate but are you on anything else for your PsA? If not aren’t you more worried about the long term effects of PsA - especially having seen them from a nurse’s perspective? Some people on the RA HU forum have been taking it to good effect for 15 or 20 years even. I think its quite a tried and tested drug without any long term downfalls that I know about. The biologic drugs are the ones that aren’t yet fully understood or known about in terms of long term impacts not the DMARDs. But I’m hadkt in a position to promote MTX given that I’ve come off it because of possible side effects - nerve damage / neurological plus sensory issues - foul taste and blisters in my nose. Apart from the foul taste all have continued and my rheumy will no doubt try to tell me that they are all related to autoimmunity . Hopefully this will be the moment I will succeed in insisting for MRI and neuro input to rule out other stuff including MS. Wish me luck. - I really can’t afford to offend him but placing complete trust in his experienced instincts is not an option either for me. Take care and mind those sticks! X
Hi Mat. I tried taking Leflunomide but it played havoc with my bowels and gave me really bad stomach pains. I am seeing the specialist neuro in york in December…hopefully he will be able to tell me what type of MS I have. After that I will be better able to make a decision re the methotrexate. My rheumy is quite happy for me to have a break, so all is well at the moment. He said I can contact him anytime I change my mind. Am I understanding you right Mat, that its your rheumatologist your asking to refer you to neuro? Why is it your not asking your gp? My gp referred me to neuro…I’m just wondering thats all. Is it because your rheumy has more influence? Take care, Noreen PS: I do wish you lots of Luck x
Thanks for explaining your situation Blossom. My situation is complicated because I live in Orkney so consultants come here from Aberdeen. I have asked my two GPs to refer me to a neuro and for an MRI but, as with other tests they seem to think that everything relates to my RA or the drugs. They say that it is very unlikely a neurologist would add clarity to my symptoms and since I have a diagnosis of RA and am under a consultant rheumy they feel its his call to decide whether my parasthesia problem is part of my RA or not. I have tried Sulfasalazine (severe reaction), Hydroxichloraquine, oral and injectable Methotrexate (20 months). Also tried a Parkinson’s drug for possible restless leg syndrome and am weaning off Prednisilone now to be assessed for the big gun Biologic drugs. Not sure where this will all lead really. I have learned a lot about RA and other autoimmune conditions too and have taken myself off down to Edinburgh for private tests of my vitamin D and other stuff because GPs are both reluctant to investigate my neuro symptoms themselves or give me other tests. They think its their job to look at the probable causes of symptoms not the possible. Man GP says that if we explore the all possibles there will be no answers probably and I will just get frustrated. I think he actually means that its too expensive and time consuming and I have a family and am self employed so should conserve my energy and trust him and my rheumy and the woman GP to know what is best based on their wealth of experience. But they aren’t the ones living with all this rubbish going in in their biodie of course! Hope this explains? Mat xx