Update - sero positive to sero negative and possible RLS?

Mat48

Hi - thought I'd update and hope that I'll read updates from my fellow peripheral neuropathy friends on here too perhaps.

I feel completely shattered from the GP visit I've just got home from. He gave me 30 minutes which is a first. I managed not to cry but I think he knew if he gave me an inch I probably would so he was very pragmatic.

He explained that he thinks I may have hit the nail on the head when I emailed him last week about my poly neuropathy continuing - wondering if it could be to do with Restless Leg Syndrome perhaps. I sent him a Canadian research piece I found online making a strong connection between RLS and RA.

He must have actually read it and, after quizzing me more today, thinks he has decided to try me out on a dopamine drug starting with P to see if this makes things better for me.

He doesn't think my problems have been caused by the Methotrexate anymore - although I pointed out, as DD and SW both pointed out to me, that it may not have come out of my system yet. It took 6 months to work for my RA and it therefore seems possible that it may take a while to leave my system too. He promises he won't rule this possible cause out but he feels it's much less likely because my neuropathy is worsening if anything now - and certainly not getting better as the drug leaves my system.

Then came a bit of a shock, although he was fairly disinterested in this I have to say, my rheumatoid factor has gone from being a low sero-positive of 24 for 2 years, to being negative at only 15. I asked him whether this might mean that the RA has disappeared. He shrugged and said it might mean it wasn't straightforward RA to begin with because there was some doubt hanging over my diagnosis anyhow. But I definitely have some kind of auto-immune arthropathy and it probably would be back or just take a sero-negative form now. He felt it might indicate that the disease is currently inactive, having previously been positive - but all they can do is treat people by symptoms. My ESR has always been quite high even when it's come down on the injectable MTX.

He took ESR and my ferratin again as it's been a while. My ANA was negative which he feels is good too. He says that conditions like Vasculitis and diabetes (which I've been recently found negative for) would produce more obvious sensory changes such as numb toes and from his nerve conduction test three weeks ago it was clear that I'm not suffering from anything tangible. Therefore, (and he wasn't saying I was imagining my symtpoms he stressed!) they have ruled out vitamin defficiencies and obvious causes of PN and so RLS might be the most obvious thing left. He says he's going to think hard about it today and tell my rheumy about my blood results - and decide which dopamine drug to get me started on later today.

I feel totally nonplussed by all this. I told him I was suffering from very black moods and he felt it was good that I have stopped the Amitriptyline as this might be making RLS and mood issues worse anyway.

It has taken me two years to grudgingly accept that I have RA. I've done this by becoming an active member of NRAS and a Scottish Ambassador for them too. Also I've been invited to speak at the EULAR conference in Paris in June about my telemedicine experience last year. I think I will now feel a complete fraud so my whole world is once again shifting and I'm not sure what to feel or think?

barbara12

Mat it just goes to show how complex Arthritis is... :? the more I read on here the more confused I become..
Im glad you GP gave you 30 mins..at least he is listening and trying to help..and it also goes to show how we have to do our homework suppose GPs cant know everything.
I do hope you get some answers very soon, you certainly deserve it.
Please keep us updated and I do wish you well with it all x

Mat48

Thanks a lot Barbara. I feel the same way as you about all the complex health possibilities - its amazing to me that so many people take their mental and physical good health for granted really! X

stickywicket

As you probably know, Matt, I'm rubbish with tests and initials. This does all seem complicated but you are being taken seriously and that must be worth a lot.

As for the conference - there's no reason at all to feel a fraud. Your experiences are perfectly valid even if it should turn out that you never did have RA. I, for one, would find it very interesting.

Toots

On the one hand, glad to hear your gp is taking you seriously and that you may be making some progress, if slowly. On the other, intrigued to find that one can go from positive to negative with an RF factor - I didn't know this.

For what it's worth, I don't think you should feel a fraud at all. Your experience seems to be classic in many respects, in that inflammatory arthritis is difficult to pin down and has many flavours....

Mat48

Thanks. I didn't know that it was possible to go from sero pos to negative either Toots. But I did kind of guess that I may be the freaky exception having had a freaky disappearance of a life time of eczema - a freaky menopause with not one single symptom (unless you count disappearance of eczema and appearance of RA as classic meno stuff?) and then a rare and serious side effect to Sulphasalazine and possibly a very rare response to Methotrexate. Ah well. x

Starburst

Oh Mat, my heart goes out to you, it's horrible being in limbo land. Now please don't take this as a diagnosis or anything other than a randomer's opinion but......maybe the fact that your RA is not active at the moment does not mean you don't have it, just that isn't well, active! I hope, for your sake, that the symptoms of neuropathy do ease up over time. Did you GP give any indication of how long it takes for MTX to get out of your system? I guess that you're still playing a waiting game while you wait and see why you have neuropathy. If I recall correctly, you live on an Island off shore, so it's not easy to see a specialist...? Is there any way you can push for the NHS to send you to a big teaching hospital? It sounds like you need a proper work-up from maybe a couple of specialists.

Take it easy, if you can! Be kind to yourself.

Starburst

Oh and I've had 2 negative RFs followed by one low positive RF. They don't bother testing me anymore. I'm diagnosed with RA but they also call it an autoimmune inflammatory arthritis too because they're still unsure with me due to a plethora of random symptoms.

Mat48

That sounds much like my new planet Starburst. Sorry you've been left in limbo land too. I don't know why they can't just call it all RA and allow us the dignity of a label that comes with a very broad brush? My GP sounded quite frustrated by my need to call this something other than an autoimmune inflammatory arthropathy today. I know this is how my rheumy thinks too. He said RA is actually just an umbrella title for several different diseases - so why can't they just use it for us then?

Somehow it helps to have a name to work with and refer to - inexplicable as that may sound to these medical professionals.

I wish he would refer me to a neurologist in one way but in another way its a relief having one person in charge and I do trust him to do his best by me in as far as I trust anyone.

And at least he does believe me about this weird neuropathy. Maybe the rheumy will shed some light on things when he gets back to my GP? I got tired of him talking about all these drugs and side effects etc today and just said "I'm too depressed to care anymore. I just want to sleep again. You decide what's best - you're the doctor". He smiled in his way and said "I love hearing that!". I don't know if he was being ironic or facetious or whether this was his way of saying "good please just trust me to do my job" but I sensed a certain alarm in this comment - as if he was saying "heck I thought we were in this together? This is too much responsibility for me!" But he is paid something in the region of £100,000 a year to make these decisions of course and I'm just the sucker with numb calves, burning hands and feet and a feeling of total helplessness and exhaustion. Hell if he had told me to go away and swallow a packet of Zoplicline I probably would have done it the way I'm feeling just now :roll:

villier

H Mat

Sorry I didn't get back to you yesterday, I was in for treatment which I am in most of the day then when I get home I am a bit done in, have slept most of the day and feel a bit better now.

Anyway, you are not a fraud I can assure you just because your bloods came back differently this time, look at starburst they don't just go on bloods alone they look at the whole picture. My Neuropathy was diagnosed on the whole picture as my ANA was weakly positive but they are still treating me with an autoimmune condition, I asked my consultant how they came to the conclusion it as a neuronopathy/ganglionopathy I had he said it was down to my symptoms and where it all started which was in my hands.

You sound as if you have got a really good GP there but remember GP's know a little about a lot and as you are seeing a Rheumatologst I think he will be leaving it up to s/he to decide about a Neurologist. When I go to my GP with new symptoms he just prescribes meds for me but leaves any other tests up to my Neuro it was him that referred me to the Rheumy regarding the Sjogrens.

Reading other posts I was wondering if you stayed on an island off the north of Scotland the reason I am asking this is the hospital I get my treatment is a teaching hospital(Glasgow) as someone suggested, maybe you could give your Rheumy's secretary a ring and explain what has been happening and maybe take it from there.

I am afraid I know nothing about RLS and the meds that go with it lets hope it will relieve some of the pain and sensations you are getting. Please let me know how you get on and if there are any questions you want to ask feel free............tc...............Marie xx

Mat48

Please don't ever apologise for not getting back to me Marie. You and Anna have both been very supportive and you have enough on your plate I know.

I've collected my Pramipexole (dopamine agonist) now and bumped into one of my old friends who a practice nurse. We went out for a cuppa and after talking sons (best friends) and other related stuff I told her about my latest saga of the RLS. She told me that she too has numbness and tingle always now in one part of her lip and all her finger tips. She lies in bed and frets about it - has had all her bloods taken and told me the results. I felt like her doctor - suggesting Pernicous Anaemia and folate deficiency etc! She said she just hides her head in the sand but worries privately about it a lot. She says if she was in my shoes she would have ended up having a breakdown as mine is everywhere and keeps me up all night every night now. I'm feeling a bit bipolar now with it all. High for a few hours on exhaustion then I crash to the depths.

I live in Orkney and my GP is very good I feel. She told me is is completely committed and a bit of a workaholic - which I know already really - he's exactly my age and we have friends in common. He made sure the drug was waiting for me at the chemist today so not hanging about - I think he could see I was at my wits end yesterday. I have told the rheumy-physio who relays stuff to my rheumy usually. She thanked me for the update.

I suppose I'm really scared that my rheumy will relegate all my health problems to neuro issues now. I did find out that my ESR has risen from 28 to 40 again now so am hoping that shows that the MTX worked well for my RA and I will need something to replace it at some stage quite soon? Its not exactly soaring as it has been in the past but I think the rise probably does explain why everything is aching and flu like in my muscles and joints just now perhaps. My fizzing is equally powerful in hands and arms as feet and legs but the cold, numb calves are the feature of this that bothers me most in the daytime. At night its the burning fizz - as though acid has been injected into my hands and feet and was slowly burning away at everything else too. I keep thinking I'm going to be carted away to the mental hospital in Aberdeen every night. I told my rheumy about the neuropathy when I saw him for the yearly apt about 6 weeks ago. He just shrugged and said he didn't think it was RA related because my ESR was down to 28 and not a swollen joint in sight. I don't think he's too interested in neurological things - but he might push my GP to refer me to one I suppose. GP knows that if he does that it will take forever and has ruled out that its actually causing sensory peripheral damage for his nerve conduction test. I think he's trying to keep me under his wing for now - whether because it makes his life easier or mine I'm not entirely sure. Mat xx

Boomer13

Hi again Mat;

I was just re-reading your thread and even though I am perhaps not at my most rational at the moment, I think Marie is right saying autoimmune diagnoses are first and foremost made on the clinical picture, not just RF+/-. With a seronegative form of RA being a recognised entity, it wouldn't surprise me if becoming RF- is possible and merely means that it has become inactive (a potential positive thing, yay!) not that you no longer have it, or never did. There is also the issue of labs making mistakes occasionally; your next bloods may show you as RF+ again.

I always thought bloods results were objective and meaningful until I have seen my own values here, there and everywhere and no one very concerned about it unless the values become consistently abnormal, or out of range by a huge amount. Weird. Too bad our illnesses don't come with a medical degree, I feel I need one to figure it all out, and, we haven't even talked neurology yet. EEks, that's a complex subject!

While I appreciate my own doctors letting me in on their thinking and the complex physiology behind autoimmunity, sometimes it is more helpful emotionally to be told you have X and the treatment is Y. My thoughts reading your comments about your doctor visit was that he seems to respect your intelligence and ability to digest the implications of having a disease that sits on a spectrum of autoimmune phenomena that are dynamic, overlap rather than stay discreet and do not conform to many rules across individuals. However, being able to appreciate this doesn't mean there's no relief in being able to call your illness X and explain it to others as X. I have never become used to the vague nature of mine, even if that is the reality physiologically. Being able to call it PsA finally was a huge relief and has lessened my anxiety around being ill (well, until recently as you know).

So, what I'm trying to say in long-winded fashion, is that you likely still do have RA regardless of your new symptoms and -RF bloods, because of the clinical picture your doc sees more than the blood results. You are not a fraud. It's the complex nature of these diseases, our genetics, the state of our physiology, drugs we are taking and other factors that determine what our bloods are going to look like and how symptoms/signs manifest themselves. I know you know all this, I just thought the reassurance might be helpful at the moment

If only having one of these bloody diseases made us less likely to have another that would be terrific, but unfortunately it makes it more likely that we can have overlaps; multiple autoimmune problems. Really wish that wasn't true. I hope something is figured out for you soon, and the docs find a treatment that works. Also, hoping I'm being helpful here and not merely a PIA!

I know we will stay in touch so in the meantime, take care of yourself and know I'm thinking of you, xxx(())
anna

(I see you written a new post, I've just posted this anyway before I've read your new one. A)

Mat48

Thanks Anna - you could just paste this and put it on my other post as it is so long and so very articulate and valid and helpful?

Well I took my first Pramipexole an hour ago and am now waiting to turn into a gambling sex maniac, shopaholic with a vast appetite as the sheet warns might happen. Husband very hopeful about the libido increase but I'm not because I haven't slept for so long now that I wouldn't have the energy to contemplate any of these things (apart from the food!)- compared to Methotrexate it sounds a breeze really but always a thought starting a new med of course.

My ESR has shot up so I'm feeling less fraudulent - and hobbling about today like my whole body has flu. Might be RA or might be the fact that I spent a lot of the night flapping my arms and peddling my legs in the air like a crazy woman - convinced that I was going to be carted off to the mental hospital first thing in the morning with the burning ants having truly crazy party across all my limbs. They don't seem to have suffered from hangovers at all and are still at it but I'm hitting Zopiclone tonight so they can B off! Mat xx

villier

Hi Mat

I hope you managed to get a sleep last night, I think sometimes the sleep deprivation is just about as bad as the pain and unfortunately neuropathic pain it appears is always worse at night. I hope the Pramipexole doesn't take too long to kick in, I find apart from the Epsom salts, running my hands under a cold tap gives me a bit of relief for a few minutes and standing on a cold floor for my feet. If it is any consolation you do get used to the ants partying and doing the conga all over your body :roll:

I didn't appreciate that you had spoken to your Rheumy who didn't seem unperturbed about your symptoms, if it was me I think I would be keeping on at my GP to get more tests done to get a proper diagnosis, it has taken me eight years and a lot of trials of meds and tests to get to where I am now, keeping fingers crossed(trying to) that you get some relief soon, let me know how you get on...............tc..............Marie xx