Left Hanging

[novapat1970]

New to the group. Been having unusual symptoms for almost ten years. Issues began with some numbness in my hands in 2005 or 2006. I have not been able to hold a phone to my ear for more than five years as my fingers start to go numb (have to use a head set). I've had periods where lifting my arms above my head has been problematic. I'm always waking up with something numb...fingers, hands, feet.

For over a year I have had mild to moderate shoulder pain in the right shoulder (left shoulder is fine).

For the most part, over the years, my symptoms have primarily been numbness. Only recently have I started having some pain in my fingers which gets worse when I squeeze things (once in a while my fingers with lock-up for a second and I have to reopen them and then they are fine.). For years I've chalked it up to nerve compression. I have scoliosis, a winged shoulder, and terrible posture...I figured nerve compression starting in the shoulders was causing the numbness in my hands.

I finally saw a Rheumatologist a few weeks ago. Everything was normal...(Sed Rate=2, CRP=0.5, neg for ANA, neg for lyme, RA factor=7.9) except for Anti CCP which was over 250. Oddly, my doc didn't seem that concerned. He thought if it were RA my other markers would be higher (plus I'm male, nonsmoker, no family members with RA so low risk). He wants to monitor and retest in three months. Seems odd given everything I've seen says if your highly anti ccp positive the horse has pretty much left the barn and you have RA. Made an appointment with another Rheumatologist but can't get into until mid January.

Have been very anxious and depressed since I got the news.

[Liane87]

I'm sorry to hear that you're feeling so low.

When I was diagnosed 13 years ago (then aged 15) I was told there was no definitive test for RA and that they take blood results in conjuction with symptoms. Might be totally different now of course as was a while ago.

Hang on in there. I know it takes a long time to get through the nhs channels which is incredibly frustrating but I guess it's best they make a correct diagnosis as some of the meds for RA can be very aggressive in the body and there are many forms of arthritis.

If you doubt their diagnosis you are within your rights to ask for a second opinion by another doctor or if it's feasible for you perhaps go private for the first couple of appointments.

Not sure of that is helpful at all?

Liane

[helixhelix]

The horse may still be in the barn, and disinclined to move at all. From what I've read anti-CCP can show up a few years before clinical symptoms emerge. There's not much research on this which I can understand as why test if no symptoms, and there's other research that shows that anti-CCP antibodies also appear in other connective tissue disease, including palindromic RA, lupus, rhupus & inflammatory myosotis so I guess the doctors do need to wait to see what kind of horse pops out of the barn.

So do try not to be down about it, and maybe try to consider it as an early warning signal? It sounds as if you have quite a few different health niggles too, so maybe this is a prompt to try to tackle a few things? Yes, anti-CCP is a more sensitive test than RF factor, but still not 100%. And people can have all the signs but it seems that RA needs a trigger to emerge, a lot of literature cites smoking, stress and so on. Plus some people respond very well to lifestyle changes like diet & exercise.

So maybe think about what you could do in the way of exercise to sort out posture, and build up muscles to support you shoulder. and diet and so on to destress? and you may be able to keep that horse in the barn for good.

[allanah]

I agree with the others that is is awful but patience in this RA game is a virtue! Have you had any scans yet? I had that type of pain and it was slipped discs in my neck causing the problems not my RA?

I would go back to the GP and say the tests so far are ok so why am I in pain and ask about other possibilities for the pain.

I hope you get answers soon and have a great Xmas.

[novapat1970]

Thanks for the responses everyone. I"m generally an anxious person anyway, so this doesn't help, but what can you do? Being down about it will not make it go away. I'll update after my appt in January. I actually did have an MRI of the neck years ago to see if that was causing the numbness. I had some bulging disks but nothing the doctor though would be causing the issues. Thanks again!

[steve55]

novopat ever thought you my have had a minor stroke my friend ? i had one almost 3yrs ago and im numb down my left side. could be worth checking it out

[novapat1970 in reply to steve55]

Thanks Steve. The numbness came on fairly gradually and has gotten worse over the years so I don't think it's a stroke, but who knows.

[steve55 in reply to novapat1970]

mines down my left hand side. didnt mean a sroke novapat1970 your other symptoms mood swings forgetfulness etc.

[OhioBuckeye]

Hi there,

I'm in a similar situation. My sed rate and crp were normal, but my RH factor was 20 and anti ccp was 225. I've seen 2 rheumatologist a who both believe I do not have the clinical disease (very few symptoms. A few joints that her every now and again but resolve in a few days). I wonder if I have palindromic RA. It is stressful thinking I could develop full R. I have 3 young children and am in my mid 30s. I try to tell myself that if I develop it in hopefully several years I'll be in my mid 40s and everyone will be dealing with something at that age lol. I am a bit of an anxious person too and it's hard to wonder what the future has in store. I feel great now and I'm going to try to keep it that way. At least if we develop RA then we'll get early treatment, which can make a huge difference. Best of luck!

[novapat1970 in reply to OhioBuckeye]

Thanks for the reply. I'll let you know how things go when I see the other MD in Jan. It is stressful wondering what the future holds (I'm 46). I have days with few symptoms when I think things will be fine and then days where things are more bothersome and am convinced I'll disabled in a year.

[steve55 in reply to OhioBuckeye]

ohiobuckeye my wife was diagnosed with RA when she was 37 she was prescribed SULPHASALAZINE and MOBLIC.

it would take her an absolute age to get out of bed then at least a further 1/2 just walking aound to loosen up.

her boss was fantastic and so was the company she worked for.

they supplied her with a new chair an ergonomic keyboard and a foot rest.

yep she was lucky she was diagnosed early things appeared to be improving and the specialist asked her to cut down on the medication gradually then stop.

that was about 10years ago and touch wood she hasnt had an attack since.

people dont reealise what a horrible disease this is.

i hope you get sorted and sincerely wish happy and pain free Xmas

[Hidden]

I understand too although in blood test terms I'm at the opposite place to you. All my autoantibodies including anti CCP are negative now although my rheumatoid factor was a weak positive for a few years when my joints were bad and I was diagnosed with seronegative RA. My CRP is almost always raised, sometimes high. The only time it every got into normal range was following IV antibiotics for an acute infection earlier this year.

The area I've moved to don't use sed rate/ ESR for RA or other inflammatory diseases. I was told by a professor who sees people with very seronegative profiles (ie nothing showing in blood at all) that the only thing the elevated ESR and CRP confirm with me is that I have certain autoimmunity. Without symptoms in my joints currently none) my RA is innactive. I'm also very drug intolerant so my old rheum took me off everything and said not to pay too much heed to my inflammation markers - I would only qualify for more immunesuppressant drugs if my synovitis came back. I think this is okay as long as the pain in my peripheral nerves, mouth and bladder and other unexplained neuro symptoms don't turn out to be more destructive than my so far non-erosive RA has.

Now, just as you say, on a good day or good week I'll clap my hands and decide I've just been a very over anxious Worrypot. Other days I'll feel rubbish, achy, fatigued beyond all reason, terribly spaced out, pins and needles raging - and then feel they've all missed the point.

Worrying is probably the most destructive thing we can do so I find keeping my brain and body engaged as much as possible is can the best I can do to stop thinking about it. Have you seen a neurologist about the numbness yet? I think that numbness and pins and needles worry me more than pain - but so far all nerve conduction tests have been fine/ unrevealing.

[cuttysark]

Could possibly be the problem in your neck causing the numbness in the hands and arms.

I had a ruptured disc that was compressing the spinal cord.. My symptoms were the same as you initially and then over a couple of years I started to fall with no warning and lose balance really easily. I also used to misjudge spaces and was alway walking into the side of the door or wall braining myself!!!

Eventually had an MRI which showed the problem and they removed the disc and fused vertebrae 5 and 6.

After that all those weird thing disappeared .

I now have tingling and numbness in my feet but they say it is related to my autoimmune condition now and not my neck, or it would be the arms and hands ,which are still fine.