First a Happy Christmas to everyone. Thank you for your help over the last few months that I have been visiting this forum. I don't always comment or post much, but I do quietly read from time to time, and your experiences and advice to one another has been most enlightening and supportive.
I have ET JAK2 negative, and am currently just on low dose aspirin, Bendroflumethiazide (for blood pressure), and Bezafibrate (for cholesterol). My Platelets have been around 1100 for a while now.
Probably 2 months or so ago I started to experience loss of feeling in the toe next to my big toe in one foot. This spread to involve the ball of that foot and the big toe. I had some feeling still there, but it was like it started 4mm beneath the skin. There were no tingling or "electric shock" feelings. After some time this loss of feeling changed to pain. And now my big toe joints are painful all the time, and probably mask out the loss off feeling sensation, which I suspect is still there. The big toe on the other foot has started to lose sensation and become uncomfortable. My ankles, and some finger joints are also starting to hurt. I saw my GP twice, and also had a scheduled haematology visit in the midst of all this. At the time of the haematology visit, my toes were at the loss of sensation stage, and the big toe only just starting to feel some pain. The haematologist thought it was probably nerve problems, maybe from the back, and had very little likelihood of being connected with my MPN.
After the pain really became a nuisance I revisited my GP and we were both somewhat mystified as to what was going on. Gout would normally have a fairly dramatic onset, which this did not. She has ordered an xray, of the foot (which I will have on Monday), I suggested going on the waiting list for nerve conductivity tests (which will be a wait of several months or worse!), and we ordered a uric acid test to go with the FBC that I was due for. She rang yesterday to say that the uric acid result showed that it was raised, so perhaps gout could be a factor after all. I suggested I stop taking the blood pressure pills (which are diuretic and can cause gout in some people), so have stopped those for a trial 3 weeks to see if things improve. She wondered about starting me on anti inflammatory medication, but I was concerned about combining this with the daily low dose aspirin that I have to take.
I was wondering if any of you have had gout that started slowly... with a loss of sensation before the pain?
I notice that some of you are on Allopurinol (that is useful at decreasing uric acid levels) I wonder if this would be helpful?
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stillkicking
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Lovely to hear from you, I've been meaning to get in touch with you for some time to talk potting! I have been struggling a little bit lately with it myself, but did manage a very successful wood firing last week in my very much modified and easy (sort of) to fire wood fired kiln. I feel like I have successfully scaled another little mountain after a firing! Happily the "view from the top" made the effort worth while this time around!
I contacted my GP (by phone) and she is happy to put my on allopurinol. I have to do a bit of a shuffle with other meds to start it as she says I need to take anti inflammatory meds to when I start the allopurinol so have to briefly stop the daily aspirin. So I'm doing my little change around of meds at the moment and started my first allopurinol today.
Must say that the issue with my foot/feet is rather baffling, but hope that the anti inflammatory stuff calms things down at the very least!
Very Best Wishes to you for Christmas and the New Year,
Merry Christmas 🎄. I wouldn't have thought gout would cause loss of feeling. Hopefully it'll ease with what you're changing, otherwise one fast way to check if it's nerves may be to visit a chiropractor or osteopath. If this is the case you should notice a difference fairly quickly. My 2 toes from big toe go numb when walking or standing too long, it's either my back or bad circulation (as I have blocked arteries in my leg).
If ibuprofen was doctors choice of anti-inflammatory be sure to ask about any interactions with aspirin. I know they must be taken either 8 hours prior or 30 minutes after taking aspirin as it stops aspirin doing it's job.
Good to hear from you, thank you for your useful observations. I am fairly baffled as to what is going on with the feet, and I certainly agree that the loss of feeling does sound like something other than gout! Interesting thought regards chiropractor or osteopath, I guess a podiatrist may be another option along those lines too. It is a shame that there is such a long wait here for nerve tests to be done through the hospital system, as I think that would give very good clues as to the problem if there are any "wiring" issues! When I saw my GP I said that I supposed it would be a 4 month wait, and she smiled wryly and said "Much longer!" Of course, with these things, it is always possible that there are more than one things going on..... poor nerve transmission plus something arthritic and so on!
The Doc has put me on a short course of Naproxen whilst I commence allopurinol. Whilst I'm on the Naproxen I have to stop the aspirin, but this is only a temporary measure.
What fun! Anyway, sun shining today, roses in bloom, and birdies singing joyfully, and I accompanied them for a while on my ukulele to blow the cobwebs away so there is a lot to be thankful for!
Thank you for getting in touch. I certainly do wonder if the ET is behind this in one way or the other, bless it! However, my Haematologist thought that the foot problem was most unlikely to be due to MPN naughtiness (although she saw me at the time when loss of sensation was the primary problem.... now it is pain that bothers me more!).
I still would like to hang on a bit longer before the HU treatment. The Haematologist did also say that she would like the foot problem sorted before all that starts, because it could become very confusing with side effects from what they use to reduce the platelets.
It wouldn’t surprise me if the ET was behind it; however, what you say in your last paragraph makes sense.
When or if the time is ever right for you to commence HU, it’s really not that bad! I do understand yours and others reluctance to begin HU treatment, I also felt a similar response initially.
Before I started HU I was having weird joint pain in my right elbow, not like the wear and tear type that pains me now and again. It disappeared (not the elbow, the pain) within a short time of beginning HU eighteen months ago. It’s only in hindsight these things become apparent.
I vaguely remember reading somewhere, how the abnormal platelets in ET have difficulty navigating through the smaller finer capillaries, such as in the extremities, because of their abnormal shape. Would that cause pain, I can’t answer that - but it does make you think!
Anyway, Merry xmas to you and your family. I hope the New Year brings answers.
I am so sorry for all the problems you are having. I was having gout which has completely disappeared since I've been taking Alopurinol. My gout would come on over a few hours, always round my ankle. It was incredibly painful. I couldn't put my foot to the floor. The medication has completely stopped it. I take it with food and lots of water. No problems. Your uric acid levels will be an indicator of the possibility of gout. I wish you well and hope you are able to have a lovely Christmas.
Thank you so much for getting in touch. It was very useful to hear about your experience with gout, and I am very glad that Allopurinol has worked so well for you. What you say about the rapid onset and acute pain from gout is very helpful, and really makes me further question what on earth I have, as my pain is fairly constant low level that gets worse with walking and through the day. It is uncomfortable, but not acutely horrible in the way that gout obviously is! The only things that indicate gout for me are the raised uric acid levels and the location of the pain (mostly big toe joints). I am hopeful that the Allopurinol will at least lower my uric acid (which is probably a good thing), and that the anti inflammatory meds will calm things down a bit. I suspect that we will still be looking for answers as to what is going wrong for some time yet!
Might be worth getting your blood sugar levels checked, just in case they haven’t been recently. Loss of sensation and/or tingling in extremeties can be caused by diabetic induced peripheral neuropathy, and there are further complications that can cause joint pain (Charcot joint). It’s very unusual, and quite unlikely, but perhaps worth ruling out by a 10 second blood glucose test.
Hope you get it sorted, and a very Merry Christmas!
Thank you for the good advice. I'm pleased to report that all is OK with blood sugar as that was also tested for. I'll have an Xray of the foot tomorrow and hope that this is able to at least rule some more things out!
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