can barely use my hands but the electrical tests gave normal reading

gaylec
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Hi, I've been suffering since Feb 2011 and had the tests in July 2011 - gave readings of level 2 CTS, even though I was constantly numb and in pain. I had steroid injections in both hands which relieved it for a short while, I would say about a month. I hadn't gone the normal CTS route, as the GP had thought it was arthritis. After having the injections the consultant simply said that if the pain came back (I had told him it never really went away) go back to my GP and start again. I finally went back to GP in April as the pain was becoming impossible - I knit and sew for a living (my own business). I've just had the electrical test again and the results were normal. I really don't know what to do or where to go, this has dragged on for so long. I was told it might not be CTS, but there was nothing the woman doing the test could do. Do I go back to the GP and wait another 3 months to see someone else? I'nm already having to re-consider my business, I can't knit due to pain and pins & needles, I can't open things, I'm in pretty much constant pain. What else could it be? Look forward to your suggestions

jeremydpbland
Online

You need to come and see me so that I can think about it as I see you are a Canterbury patient. Something odd has happened in the administration as you were referred to me by Dr De Giorgio in May and should have had an appointment with me on 25th June but it appears that some change was made to that and you have been tested while I was not in the department - we will work out why when I eventually get to see you. I can probably see you a week on Thursday (9th August) but will not be able to confirm that until Monday 6th - would you be able to make that Thursday morning?

Once you have had a chance to see this reply I will also move this thread into the Canterbury patient's forum. JB

gaylec
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Hi, thank you for your response. The administrative problem was that the appointment letter was sent to my old address and once discovered I was slotted in at the last minute.

I can make Thursday morning and it would be so good to see someone about it properly.

Thank you, Gayle

jeremydpbland
Online

OK come along at about 8:45 am on Thursday and as soon as I get there we will have a think about what to do. I have discovered in the last few days that the hospital management decided to make alternative arrangements for some of my patients in my absence - which is why you have not been seen in my carpal tunnel clinic.JB

gaylec
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Hi,

Thank you, I'll be there Thursday morning.

Gayle

gaylec
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Hi,

Just wanted to say thank you for being so nice when I came to see you last week. The steroid injection in my right hand has made some difference, though I've not knitted so can't say whether the pins and needles have stopped. My left hand seems to have been more painful though and its only really eased by wearing the splint for most of the day.

Hopefully the appointment with the rheumatologist will come through quickly - I'm having to turn too much knitting work down!

Thanks again

Gayle

jeremydpbland
Online

Sometime about the end of this week or early next week could you add another symptom severity score to the record on the website here so that I can see how much the symptoms have changed subjectively after injection. If there has been a marked improvement in the right side then we might consider injecting the left too I suppose. I expect it will take quite a few weeks to get a rheumatology appointment as they are pretty busy too. JB

gaylec
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Hi,

Have done the test, though I don't think it really reflects that my right hand is greatly improved since the injection. I'm still not really knitting so can't say how this would be, but it just feels alot less painful. Funny though, my left hand has been much more painful! An injection in that while I wait for the rheumatologist would be good if it makes it hurt less. Thanks, Gayle

jeremydpbland
Online

Well the right hand SSS score has come down from 4 to 2 which is a pretty substantial improvement (I must get the site changed so that you can see at least one decimal place for these repeated scores). We may be able to inject the other one for you next week perhaps. I'll get back to you on that. JB

gaylec
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Hi,

Have had appointment through for rheumatology - 15th October, so probably no point having the steroid injection now, its only 6 weeks away.

Gayle

jeremydpbland
Online

I guess that's pretty reasonable for a rheumatology appointment. I would like to know what Dr DeLord thinks about the problem if you don't mind letting me know (if that is indeed who you get to see). It's probably reasonable to defer a decision about injecting the other one for 6 weeks. JB

gaylec
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I am seeing Dr De Lord, and of course I'll let you know what happens. I'm kind of half expecting them to say its not arthritis and send me back to you! Only cos its dragged on for almost 2 years. My fingers are as crossed as I can get them though that I get some answers

Be in touch soon

Gayle

gaylec
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Hi

I saw Dr De Lord today. She thinks the problems are caused by my hyper mobile joints rather than arthritis, so I've had blood tests and an x ray. If the x ray shows nothing she will call me in for a scan - however she is fairly certain nothing will show up. She is referring me to a physio who will be able to tell me how to not over stretch myself, which she thinks is causing the problems.

She was much much nicer than Dr Witherington - thank you for referring me to her!

Gayle

jeremydpbland
Online

I'm glad you got on OK with her. Let me know how the symptoms evolve as I would be curious to know what works for you - if anything. JB

gaylec
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Will do. Funny really, I had physio about a year ago following a shoulder injury and he was the 1st person to tell me I have hypermobile joints. It would seem they may have been the reason for many problems over the years.

I will keep you updated

jeremydpbland
Online

I suspect that, quite apart from the hypermobility which I am happy to leave to the rheumatologists, there probably is an element of CTS too. We certainly seem to have seen some effect from injection of the right wrist. We can keep an open mind about the left one as it would be a simple matter to inject that side if you decide it is worth doing. We can also re-test you fairly easily if the CTS-type symptoms become more of a problem again in the future. JB

gaylec
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Hi, had scan of hands and feet today, looks like its actually rheumatoid arthritis. Bit of a bummer really, but start physio for the hypermobility next week and then back to Dr DeLord to discuss options/ what to do next. I doubt you'll need further updates? Thank you again for all your support with this though. Gayle

jeremydpbland
Online

It's entirely up to you how much you carry on feeding back to me of course but I am always happy to hear from previous patients, whether good news or bad. Cases like yours fall into a difficult group for me - patients whose symptoms sound somewhat like CTS but in whom tests are normal - I am always interested to know what diagnoses emerge in such patients and how they respond to treatment. I have seen a few patients previously whose hand symptoms were eventually attributed to rheumatoid but I would not buy that diagnosis here until it is confirmed by Dr De Lord. JB

gaylec
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Hi,

Having real problems at the moment. I stupidly did a huge amount of writing 4 weeks ago and have been in serious trouble with my right hand ever since - it almost feels broken. Is there a chance I could have caused CTS?

I spoke to the rheumatology nurse, but she didn't really suggest anything other than using anti-inflammatory cream (I have, it didn't do anything). Not due back at clinic til March.

Went to my GP - he just said to take painkillers, which don't really do a huge amount. I've been wearing a splint pretty much 24/7 but I can't tell whether its making it better or worse. No real sign of any swelling, but it is agony to do pretty much everything. The pain is mostly in my thumb and all around my wrist joint. As you know, I make clothes for a living and its really making that very difficult.

As you were sooooo helpful last time I thought I'd pick your brains on the issue as I'm at a loss as to what to do?

I look forward to hearing back from you

Thanks

Gayle

jeremydpbland
Online

If the predominant symptom is pain rather than numbness and tingling then it is less likely to be CTS but rheumatoid arthritis (if that has definitely been confirmed) is probably a significant cause of secondary CTS and it would not do any harm to check your nerve conduction studies again to see if there has been any deterioration. I can arrange to do that for you in the next couple of weeks or so if you like? JB

gaylec
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Hi,

RA has been confirmed, though my symptoms have been fairly low level up til this point. It would be great to have the tests again just to rule it out. If you could make an appointment for me that would be brilliant.

Thank you

Gayle

jeremydpbland
Online

Ok I'll send something out in tomorrow's post. JB

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