Were Your Symptoms Like This?

MrStiffy

Hi, this is my first post on what looks like a really useful site and I'm hoping to use the combined wisdom of the forum's users to learn a bit more about my symptoms.

I suspect that I have rheumatoid arthritis but the two doctors I've spoken to so far don't agree with me.

I'm male, 50, and five weeks ago while I was overseas I had a headache (rare for me) then a couple of days later I felt a bit nauseous for an hour or two. That night and the next day I noticed that I had a frontal headache if I bent over. The following day there was a bit of a sensation in my right knee though it wasn't painful.

The following day I still had that same feeling in my knee when I went to bed but other than that felt fine. The next morning, I woke up and all five fingers on my right hand were stiff. The left hand was also affected but to a lesser extent. After a few minutes they were all back to normal. I also noticed a sensation in both wrists and both ankles but that disappeared pretty quickly. There was also a tingling, warm sensation in both legs from below my knees to just above my ankles and a similar sensation from just above my wrists to just below my elbows. During that day I also felt a little twinge in my elbows and I noticed that the soles of my feet sometimes felt sensitive.
The next day my fingers were all a little stiff on waking but less so than the previous day and since then I haven't experienced much finger stiffness when waking. The main symptom over the next week was that warm, tingly feeling in my forearms and forelegs (though my wife says that they didn't feel warm to the touch) and a bit of muscle stiffness in my calf muscles.
My first thought was that it might be gout but a search on the Web suggested RA. Within a week I visited a local professor of rheumatology who looked at my blood test results (CRP=6, Rheumatoid factor negative) and said it was almost certainly viral arthritis and that it would probably clear up within a fortnight. It didn't.
I returned to the UK two weeks later (two weeks ago) and while the warm tingly sensation has vanished I have experienced some stiffness in toes and fingers and the occasional throb in bones and joints which comes and goes. I saw my GP a week ago and he sent me for blood tests which showed a CRP of 2 but very low vitamin B12 levels. So he now wants me to receive Vitamin B12 injections over the next few weeks and then see him again in a month.
My GP doesn't like me using the Web to diagnose myself but I can see little or no info linking Vit B12 deficiency with joint and muscle stiffness.There are mentions however of some RA patients being Vit B12 deficient. And surely if the problem was vitamin deficiency it would be a very gradual progression and wouldn't come on overnight.

I'm very conscious of the 12-week window for beginning treatment with DMARDS because that is supposed to make a significant difference to the progression of the disease but if I just plod on with vitamin B12 shots and wait a month to see my GP nine weeks will have passed and I won't even have an appointment with a consultant.

So my first question is do the symptoms above sound like Rheumatoid Arthritis? By the way, I have no fatigue, no redness, no visible swelling, no discomfort when joints touched, squeezed or prodded, no real pain at any time. The stiffness is no worse in the mornings than any other time and there are times when I totally forget there is any problem whatsoever

My next question is how do I get my GP to refer me to a consultant speedily? I mentioned to him that I had consulted the Web to try and work out what my problem was and he mumbled that patients doing this often confused their own symptoms with ones they've read online. The fact is I know what I'm feeling.
I plan to see my GP again and ask him to refer me to a rheumatologist but I don't know how he'll react because in effect I'm saying that I don't trust his judgement.

The alternative is to go private and that leads me to my third question. What is the approximate cost of a
a) a private consultation
b) typical blood test
c) MRI
Is it true that if I see a private consultant without getting a referral letter from my GP my GP can then refuse to refer me for treatment on the NHS?

Thanks for any feedback you can offer

maria09

Hi
Your symptoms to me also sound like inflammatory arthritis as this is one I suffer from as well as osteoarthritis too
Diagnoses can be difficult as I never have raised inflammatory markers my rheumatoid factor is negative and my bloods are always normal.
The consultants have to follow the NICE guidelines and can be found on Internet as the more advanced drugs cost thousands and if the relatively cheaper drugs woke first then they don't have to go down the most expensive route but if you are willing and able to pay maybe its different
The Internet is a wonderful tool but can't diagnose you
They only way is by examining you taking relevant blood tests and taking a very indepth history regarding your symptoms and how you feel in yourself.
There are no quick fixes in arthritis and what works for you may not work for someone else
Plus the drugs do have nasty side effects and close monitoring is essential.
I'm not sure how your GP or practice works there are many on here like myself who have excellent GPs but some on here have a very different story
If you go in all guns blazing demanding this that and the other is of no benefit all that will happen is your GP will put up a barrier don't forget they have many many years training and experience
I've just retired after 30yrs as a qualified nurse and was still learning and still am to this day
Just because certain medications are given for certain conditions mean they will work for you
Oh god I'm waffling!
Will stop now hopefully others will be able to offer advice
Hope you get the answers you want
Maria

chookgate

I know nothing about your symptoms or what they might be indicative of, however regarding the questions of going private.

Yes, you can self refer to a private consultant, no idea if a GP can then refuse you on the NHS, but I have heard that once you have a private prescription for drugs you can't then have NHS drugs for the same condition (all or nothing).

Most private hospitals have websites that list approximate costs of treatment and/or tests, or list a phone number where you can ask costs.

I have a vague recollection that an MRI costs about £500 but it probably varies according to the establishment performing it. My experience of a private consultation is they range from £80-£150, again it will depend on the consultant, length of consultation etc. so it could be less, it could be more.

lizzieuk1

Hi,
I have ra. It doesn't sound like u have classic symptoms for ra, the consultants also ask for anti CCP blood test as its thought to be quite specific for ra so may be worth asking for that, I think ra is unlikely though.
The B12 will def affect your muscles etc and sounds quite likely, B12 is important for the myelin sheath around the nerves so if its low you may loose these cells which will affect nerve conduction and cause tingling etc. I would def get the b12 asap. Did u explain your nerve changes to the gp? If not pls do this is v significant info for them.
Now I'm not trying to freak u out but they may also want to test for other nervous system problems such as MS, it is most likely just the b12 prob but please explain all your symptoms to the gp,
So best to Google B12 and nerves and u will find lots of info, remember our nerves control a massive amount of what goes on in the body so the symptoms you get can be very varied and widespread.
Hope that helps.x

MrStiffy

Thanks for the responses.

Maria09: I don't plan to go in 'all guns blazing' because I've had this same GP for 30 years,but at the same time I want to be a bit pushy/proactive because he doesn't seem to have a great sense of urgency and if it is RA, time is of the essence.

Chookgate:If I were to go private initially and the consultant decided I do have RA and prescribed drugs for it, would the Health Service be able to cross check that I had been prescribed drugs privately? I have just received a quote this afternoon from a rheumatologist in London of 250 for the first consultation and 150 for each subsequent appointment.

Lizzieuk1: I suppose it's possible the Vitamin B12 deficiency is the cause but I still think its effects would be very gradual. In my case I went to bed with the slightest of twinges in the knee and then the next day had stiff fingers on both hands,tingling in my forearms and legs and twinges in other joints too.

I plan to see my GP again and ask him to refer me to an NHS rheumatologist. If he agrees, I'm sure there will be a waiting time of several weeks in which time his suggested remedy of vitamin B12 injections should have time to work (if he's correct) and we can cancel the appointment with the specialist. If he's wrong about the B12 at least I'll already be in the queue for a consultation with a rheumatologist.
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barbara12

Hi
there are so many on here that have had a battle getting diagnosed...if only GPs would have a list of test they could follow..and do them all at once..I have OA...but I keep having people saying that stiffness in the fingers first thing in the morning is a sign of RA..I have had the inflammation test done and they were raised...but the second one wasn't... so that was that...I cant really help with RA symptoms, but I do hope you get some answers very soon... you take care .

lizzieuk1

Another thought crossed my mind was Lyme disease as you've been overseas, prob worth looking it up.

chookgate

MrStiffy wrote:

Chookgate:If I were to go private initially and the consultant decided I do have RA and prescribed drugs for it, would the Health Service be able to cross check that I had been prescribed drugs privately? I have just received a quote this afternoon from a rheumatologist in London of 250 for the first consultation and 150 for each subsequent appointment. [/color]

What's more likely to happen is if you go to see a consultant privately, and he makes a diagnosis, he will then write to your GP recommending medication, then you will have to go see your GP and ask for the medication on the NHS. I think the only problem comes when the consultant wants to prescribe drugs not available on the NHS (eg certain cancer drugs). I had two TKR's done privately (self referred since the GP said I was too young for the NHS to help and refused to refer me), and at no time did my consultant prescribe any drugs (in my case just pain killers though). At all times, even though I was self pay private, he kept my GP informed, so yes the NHS will be able to cross check, but no, I don't think it will be a problem.

maria09

I know you want to get it sorted quickly but all types of arthritis don't have a quick fix or a quick diagnosis
There are over 200 types of arthritis and over 80 types of autoimmune disease so diagnosis can take a long time
Most of us have had our arthritis for many years without a specific diagnosis and there no doubt many many more conditions out there that are unknown
Yes you can be pushy and persistent and there's nothing wrong with that but you also need to be patient too
After 11yrs of arthritis and in constant pain every single day is tough but I have to accept what I can and can't do and yes I get totally p***** off with life but you keep going
Everyone on here is a fighter and chronic pain is nasty nasty but we live through it day in day out yes we would love a quick fix no pain no fatigue no depression but that's not an option. We gat mad we get angry we get upset but manage the best way we can
I hope you don't have our conditions and do hope they can make you better but I the real world that's not always the case
Maria

MrStiffy

Thanks once again everyone for more excellent advice.

This morning I had to go and have my first vitamin B12 injection and while there it turned out somebody had cancelled an appointment with my GP so I seized the opportunity to ask him to refer me to a rheumatologist.
I tried to persuade him that a vitamin B deficiency would happen slowly and was highly unlikely to cause all the symptoms that I'm feeling to come on overnight but he couldn't be swayed.
He told me that no rheumatologist, whether NHS or private, would prescribe me DMARDS with all their side effects while my ESR, CRP tests were negative and before my symptoms were more serious.

He wants to assess my condition in a month's time and will then request more blood tests. Only then will he think about referring me to a specialist.

I may just bite the bullet and pay to see a rheumatologist privately to get an expert opinion on my condition and find out if anything else could be causing these symptoms.

I'm probably far too impatient to know what's wrong with me but I've read so many tales of people who weren't diagnosed until a lot of damage had been done. I keep remembering what a rheumatologist in the US apparently told a patient when diagnosing him as having RA while his blood tests still showed normal. It was something like "If it looks like a duck, and sounds like a duck .....[/color]

applerose

I was diagnosed by my GP and then by my rheumatologist 3 years ago. I have not been put on any medication, other than paracetamol as and when needed, because I am not really too bad with it. Blood tests are done regularly and I am due for more x-rays in August to see if any further damage has been done. It is possible you are not ready for RA medication and you might have to be patient until you are properly diagnosed as it may not be that.

maria09

Hi
In a way I do understand why you are in a rush for these medications but please try any be a little patient
What if you haven't got RA or any type of arthritis and you are on these really nasty drugs for nothing
The side effects are numerous can result in causing more harm than good
Don't forget most of us on here have had our conditions for years and know all about chronic pain chronic fatigue don't be too hasty in your own diagnosis I hope it's not arthritis based as you will have to learn to be patient what's the saying Rome wasn't built in a day and diagnosis most definitely not made in a day?
Just wondered what you do for a living? Might this have some bearing on you needing a quick diagnosis
Paying to see a Rhuematology Consultant will definitely get you seen quicker.
Just don't think once you start medication it will work for you and most certainly it won't start straight away some take 3 or 4 months to work
I just don't want you putting all your hopes onto the drugs just incase they don't work for you
There is no quick fix for Arthur as most of us have found out
Sorry for sounding so negative but just don't want you to find out the hard way that its not working for you
Maria

maria09

Also remember in the USA everything has to be paid for
We are lucky to have an NHS saying that I don't think we will have it for much longer
Maria

MrStiffy

I'm neither patient nor good at being a patient. I suppose I'll have to learn.

By the way, perhaps because I live in London I've received quotes from three rheumatologists of between 250-300 pounds for an initial consultation.

sailrib

MrStiffy wrote:

I'm neither patient nor good at being a patient. I suppose I'll have to learn.

By the way, perhaps because I live in London I've received quotes from three rheumatologists of between 250-300 pounds for an initial consultation.

I'm very much the same. Hope you get the answers you want

frogmorton

I paid private to see a othopaedic surgeon years ago when my back 'went'.

He was great (it cost about £200) and put me straight back on the NHS after diagnosis for treatment.

GP still had to refer me to him though even though I paid :?

Mr Stiffy - I wish you the very best of luck and hope you get sorted out soon....very worrying for you and your wife too.

Love and luck

Toni xx

maria09

Hi it's me again
That's about the going rate for private consultation
Any decent rheumatologist no matter how much you pay will not start you on the dmards without following protocol.
Just think what if it is not arthritis and you are put on those drugs straight away and they don't bother following protocol! They could get struck off you could get serious side effects or find you have an Incurable disease which was masked by the medication you have taken just wanted to put a spanner in the works
There is no cure for arthritis it is a case of trial and error to get the condition under control you may find the lesser stronger drugs work perfectly well
There is no quick fix in life when it comes to health
You need to be patient but that doesn't mean not be pro active
The impression I get and I am probably totally wrong but you feel that some of us haven't tried and its our fault we are in the state we are in because of it which is not the case
If you have the money to go do it all down the private route then go for it but remember the consultants will follow protocol no matter how much they are getting paid
I just hope you don't have any type of arthritis as its nasty nasty nasty
Lets hope your injections work
Maria

dreamdaisy

My symptoms were completely different and were not recognised as an inflammatory arthritis for five years. I can understand your wanting to get things sorted out as soon as possible but arthritis is not necessarily that obliging. Maria09 has made a good point - there are protocols to be followed and as your inflammatory markers are so low (it's taken me years and many drugs to get that low!) it is doubtful that the disease-modifying drugs and the non-steroidal anti- inflammatory meds will be offered.

In my early years I felt that the NHS doctors were not offering me enough in the way of time and treatment so my husband paid for me to see a private consultant in Norwich. It cost him £250 in 2003 (I think) for me to learn that I was getting the best treatment available. Think o'nt. DD

DebbieT

Hi,

I haven't read every post in ure thread but from ure original post I thought it sounds like it could be Fibromyalgia!! Have you looked at that as a possibility? Many FM sufferers are B12 deficient.

I have Psoriatic Arthritis, Osteo, & FM. My markers have never been as low as ures tho. I tend to agree with the other advice ... Try & slow down regarding ure diagnosis. It isn't something that a treatment can help straight away as its trial & error for us all to find meds that help.

Best of luck.x

stickywicket

Hello there, MrStiffy. I’m late coming to your thread but I’ve read it now and, as an RA veteran, like the others, I’d urge caution.

You gave a detailed list of ‘feelings and sensations’ none of which I can relate to, especially as you later say ‘I have no fatigue, no redness, no visible swelling, no discomfort when joints touched, squeezed or prodded, no real pain at any time.’ That doesn’t sound at all like the RA I have. Mine began in my fingers. They were very red, swollen and painful. You also say ‘My first thought was that it might be gout’. This pulled me up short as I would never have considered gout from what you described. DIY diagnosis from the web is fraught with danger as there’s so much misinformation out there.

As for the US rheumatologist who ‘told a patient when diagnosing him as having RA while his blood tests still showed normal. It was something like "If it looks like a duck, and sounds like a duck ...’ – I would simply say that my son, in the USA, paid for ‘essential’, expensive, root canal dental treatment by a dentist who later left the country in a hurry following several lawsuits against him for much lucrative, but wholly unnecessary, dental work.

MrStiffy

Sorry, I've been a bit slow in replying. A week ago I came down with flu-like symptoms for a few days after which the stiffness in my fingers and toes became a bit worse. Despite the stiffness and discomfort there was still not much sign of redness or swelling.
I've noticed that any stiffness tends to be more pronounced in the afternoon/evening than the morning.
More worrying for me was that I felt tired yesterday afternoon and then seemed rather short of energy this afternoon.

Thanks to everyone who has offered advice. I'm sorry Maria if I gave you the wrong impression. I don't believe for one minute that anyone here didn't try their best to seek treatment for their condition. I'm just keen to speed things up because I became fixated by the so-called 12-week window of opportunity that is said to exist for starting treatment in which it is said to be possible to slow or even halt RA. I hoped that the doctors could quickly determine whether I had RA or not and start treatment within that timeframe. That now looks impossible.
I'm now waiting on a referral letter from my GP so that I can have a chat with a private consultant and get a better idea of what is happening to me.

maria09

Hi
Sorry you have felt c***
It still doesn't sound like RA but more like some type of Inflammatory Arthritis
Hope you get some reassurance and a diagnosis from the consultant.
I had surgery yesterday on 3 of my toes so feeling a bit fragile
Thought I'd check up on here to take my mind off the pain
Got my fingers crossed and hope you do not have Arthritis as the saying goes it's no picnic :roll:
Maria

MrStiffy

I've just booked an appointment with a rheumatologist for next Wednesday in the hope that she can pinpoint what the problem is.
I hope you feel better soon Maria.

dreamdaisy

I wish you well for your appointment but don't feel too downhearted if she cannot shed much light on what is happening. An auto-immune arthritis can be very tricky to diagnose, especially if your symptoms are not of the 'classic' sort. It may be worth keeping notes of your tiredness levels, pain levels and general problems so that she can see a wider view of you than just that day. DD

maria09

Thank you
Hope all goes well on Wednesday
Maria

cherrybim

Why on earth would you think that you've got RA?