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Posted

Anyone with a similar experience?

 

About 8 months ago I suddenly got joint pain in all my fingers and toes. I tried many pills like Celebrex, Diclofenac and even Prednisolone. Nothing changed anything. I had several blood checks and this at several different locations. Checks like ESR, RF and other markers for inflammation. There is no sign of inflammation according to the values. Even an x-ray from one hand was taken.

 

Now my rheumatologist says this is Osteoarthritis (OA). I think this cannot be the case if you get symmetric joint pain in many joints from one day to the other. Had anybody a similar experience?

 

The question for me is should I not start with something like MTX? I don't like such drugs especially during Covid times. But if there is no other option... The doctor told me that I should only take pain medication since it is not Rheumatoid arthritis (RA). Time passes by - now 8 months already. I am worried that I got the wrong diagnosis. If RA is not treated early then it might be too late to stop it. What should I do?

Posted

Rather than risk unprescribed medications, and you say that you have concerns about the original diagnosis, why don't you go to visit another doctor in another hospital for a second independent diagnosis ?

  • Like 1
Posted

It is not osteoarthritis and sounds like RA has aldo benn ruled out. And indeed neither would be likely to have such a sudden onset.

 

It may be a neurological issue (peripheral neuropathy) which in turn can have many causes. Get all your medical records and see a neurologist. Where in Thailand are you located?

 

Also, are you on any medications?  Drug reaction can sometimes cause this (though would usually see elevated ESR and CRP in such cases)

 

Lastly have diabetes and B12 deficiency been ruled put?

Posted
9 minutes ago, Excel said:

Rather than risk unprescribed medications, and you say that you have concerns about the original diagnosis, why don't you go to visit another doctor in another hospital for a second independent diagnosis ?

I went to two already and both said the same. I would like to know if there is someone with a similar experience. Osteoarthritis doesn't happen from one day to the other in a symmetric form at many joints. At least this is my knowledge. But I am not a rheumatologist... 

  • Like 1
Posted
3 minutes ago, Sheryl said:

It is not osteoarthritis and sounds like RA has aldo benn ruled out. And indeed neither would be likely to have such a sudden onset.

 

It may be a neurological issue (peripheral neuropathy) which in turn can have many causes. Get all your medical records and see a neurologist. Where in Thailand are you located?

 

Also, are you on any medications?  Drug reaction can sometimes cause this (though would usually see ekevated ESR and CRP in such cases)

It could be this rare form of seronegative RA. I don't take any medication and I tried to avoid certain foods. But nothing changed. In respect of a neurologist - a rheumatologist should have the knowledge in a case like mine. 

Posted (edited)
6 minutes ago, tonray said:

Any past problems with Gout ? 

Everything got checked. No gout and never a problem with it. I make health checks at least every year. Because of the situation now I had four during the last seven months. Nothing to see. 

Edited by Mickeymaus
Posted
Just now, Mickeymaus said:

It could be this rare form of seronegative RA. I don't take any medication and I tried to avoid certain foods. But nothing changed. In respect of a neurologist - a rheumatologist should have the knowledge in a case like mine. 

Not if it is a neurological problem. As it well may be.

 

Rheumatologist's area of expertise is rheumatology not neurology.

 

The most likely diagnosis for what you describe is peripheral  neuropathy

Posted
12 minutes ago, Sheryl said:

Not if it is a neurological problem. As it well may be.

 

Rheumatologist's area of expertise is rheumatology not neurology.

 

The most likely diagnosis for what you describe is peripheral  neuropathy

Was just reading about this peripheral neuropathy a little bit. Doesn't sound good too ???? Will have to study this in more detail.

Posted

Diagnostic criteria for RA here https://www.aafp.org/afp/2011/1201/p1245.html

 

Does not sound like you meet these criteria (Visible or palpable joint swelling, either RF or ACPA positive, elevated ESR and/or CRP etc)

 

Again: have you had B12 level checked? This is not a standard part of regular check ups so will not have been done unless slecially requested. B12 defiency is one of the most common and most treatable causes of peripheral neuropathy.

Posted (edited)
44 minutes ago, Sheryl said:

Diagnostic criteria for RA here https://www.aafp.org/afp/2011/1201/p1245.html

 

Does not sound like you meet these criteria (Visible or palpable joint swelling, either RF or ACPA positive, elevated ESR and/or CRP etc)

 

Again: have you had B12 level checked? This is not a standard part of regular check ups so will not have been done unless slecially requested. B12 defiency is one of the most common and most treatable causes of peripheral neuropathy.

I take Vitamin B(12) pills and this for a very long time. But the blood level was never checked. I am afraid my problem develops into an endless medical story. I was speechless when the old rheumatologist gave me the diagnosis Osteoarthritis and this after several visits. The other one at least said that he doesn't know what I have but it is not RA. Difficult times ahead. Perhaps I get a heart attack before I cannot move anymore. At least the diagnosis would be much easier...

 

20 years ago I had severe pain in one knee. I hardly could walk. It started some weeks after a food poisoning. I went to many doctors but nobody had an idea and no medication helped. Then I read on the Internet about reactive arthritis. After about one and a half years I suddenly got for a couple of days severe pain in almost all joints - I even hardly could eat anything. And suddenly all pain was gone - within a few days. No doctor ever could give me an explanation. They did not even mention reactive arthritis. What a waste of time and money... 

 

 

Edited by Mickeymaus
Posted

Reactive arthritis is why I asked about medications. It is certainly a possibility though inflammatory markers (ESR, CRP) would usually be elevated.

 

Again -- you should see a neurologist. And again: where in Thailand are you?

Posted
7 minutes ago, Sheryl said:

Reactive arthritis is why I asked about medications. It is certainly a possibility though inflammatory markers (ESR, CRP) would usually be elevated.

 

Again -- you should see a neurologist. And again: where in Thailand are you?

Since I didn't talk nice about my rheumatologists and since there are not many at my location I hesitate to tell you my location ???? This reactive arthritis didn't cause any problems for almost 20 years anymore. But this with the peripheral neuropathy is for sure a possibility. I will try a neurologist. I still have (a little bit of) money left ???? Why can't I have an easy problem... 

Posted
1 hour ago, Sheryl said:

Diagnostic criteria for RA here https://www.aafp.org/afp/2011/1201/p1245.html

 

Does not sound like you meet these criteria (Visible or palpable joint swelling, either RF or ACPA positive, elevated ESR and/or CRP etc)

 

Again: have you had B12 level checked? This is not a standard part of regular check ups so will not have been done unless slecially requested. B12 defiency is one of the most common and most treatable causes of peripheral neuropathy.

I am just thinking why I ever started to take vitamin B supplements. Years ago I had sometimes very severe cramps in my hands, legs and feet. The doctors told me to try magnesium. But it didn't change anything. Google told me to try vitamin B. And the cramps disappeared almost immediately. At this time I took too much of them until I got a strange headache. Since then I take them only every couple of days. But perhaps you are right. Will try to find a laboratory to check my level before I consult another specialist.

Posted
3 hours ago, Mickeymaus said:

I am just thinking why I ever started to take vitamin B supplements. Years ago I had sometimes very severe cramps in my hands, legs and feet. The doctors told me to try magnesium. But it didn't change anything. Google told me to try vitamin B. And the cramps disappeared almost immediately. At this time I took too much of them until I got a strange headache. Since then I take them only every couple of days. But perhaps you are right. Will try to find a laboratory to check my level before I consult another specialist.

Yes, check B12 level first.  Are the supplements you take sublingual? Because oral absorption is nto good as you age.

Posted
2 hours ago, Sheryl said:

Yes, check B12 level first.  Are the supplements you take sublingual? Because oral absorption is nto good as you age.

They are just normal pills you can buy. But it could be a problem. Never forget when my really severe cramps suddenly disappeared when I took them. For instance I could not even leave the pool when I wanted because I couldn't walk. There I often got the cramps. Was embarrassing. After taking these vitamin B supplements the cramps disappeared completely. But of course there could be other reasons for my joint pain. Not easy. 

Posted
6 minutes ago, Mickeymaus said:

They are just normal pills you can buy. But it could be a problem. Never forget when my really severe cramps suddenly disappeared when I took them. For instance I could not even leave the pool when I wanted because I couldn't walk. There I often got the cramps. Was embarrassing. After taking these vitamin B supplements the cramps disappeared completely. But of course there could be other reasons for my joint pain. Not easy. 

As people age, they have decreased levels of the gastric factor needed to absorb B12. Orally swallowed supplements will in that case not be very effective. You can buy sublingual B12 online  from Lazada.

https://www.lazada.co.th/catalog/?spm=a2o4m.searchlist.search.1.1ef928c5BjUASY&q=vitamin b12 sublingual&_keyori=ss&clickTrackInfo=textId--801891817476751843__abId--191152__pvid--2e835e11-6fb6-4f06-ae8a-d2cd63bbb1cc__matchType--3__srcQuery--vitamin b12 sublingual__spellQuery--vitamin b12 sublingual&from=suggest_normal&sugg=vitamin b12 sublingual_0_1

 

B12 deficiency is a common cause of peripheral neuropathy in older people and one of the first things a neurologist would check, since it is so easily treated.

 

Since you are in pain, an initial injection might be worthwhile then regular sublingual supplement -- if this turns out to be the problem.

Posted
4 minutes ago, Sheryl said:

As people age, they have decreased levels of the gastric factor needed to absorb B12. Orally swallowed supplements will in that case not be very effective. You can buy sublingual B12 online  from Lazada.

https://www.lazada.co.th/catalog/?spm=a2o4m.searchlist.search.1.1ef928c5BjUASY&q=vitamin b12 sublingual&_keyori=ss&clickTrackInfo=textId--801891817476751843__abId--191152__pvid--2e835e11-6fb6-4f06-ae8a-d2cd63bbb1cc__matchType--3__srcQuery--vitamin b12 sublingual__spellQuery--vitamin b12 sublingual&from=suggest_normal&sugg=vitamin b12 sublingual_0_1

 

B12 deficiency is a common cause of peripheral neuropathy in older people and one of the first things a neurologist would check, since it is so easily treated.

 

Since you are in pain, an initial injection might be worthwhile then regular sublingual supplement -- if this turns out to be the problem.

Never heard of sublingual drugs. Normally I don't order medication at Lazada. There is enough other fake. But I will try. I know that vitamin B absorption is not easy. Supplements just make your toilet experience more colourful because the dosage is very high because only a small amount is absorbed.

Posted

I get cramp and pain very little now,

 

Dr put me on Vitamin B-12 - 500 mg  1x every other day

+ Vitamin B CO - ED  3x a day

+ Vitamin D 20,000 units  2x week

+ Gabapentin Sandoz 100 mg 2x day

 

I still get joint pain + Cramps but a lot less, for me it's going on 5 years

Posted
39 minutes ago, ignis said:

I get cramp and pain very little now,

 

Dr put me on Vitamin B-12 - 500 mg  1x every other day

+ Vitamin B CO - ED  3x a day

+ Vitamin D 20,000 units  2x week

+ Gabapentin Sandoz 100 mg 2x day

 

I still get joint pain + Cramps but a lot less, for me it's going on 5 years

How is your joint pain? Several joints? Symmetric? All the time? Very painful? What did you check? Arthritis too? 

Posted
16 hours ago, Mickeymaus said:

How is your joint pain? Several joints? Symmetric? All the time? Very painful? What did you check? Arthritis too? 

I believe he has diabetic neuropathy. Not related to your situation.

Posted
21 hours ago, Sheryl said:

I believe he has diabetic neuropathy. Not related to your situation.

I read a lot about these nerve problems on the Internet now. But I don't have these symptoms. I have also no diabetes or any other known health problems. I am 66. This problem started from one day to the other. Suddenly I had a small pain in all my toes and fingers when I moved them. On the next day I even had it in both wrists, in the knees, the elbows, the jaw and other joints. But this disappeared after a few days and since then I only have it in all toes and all fingers. Now for about 8 months.

 

I tried pills like Celebrex, Diclofenac, Naproxen and others but they didn't change anything. Not even the pain disappeared. I even tried Prednisolone but only for 1 week. I stopped taking pills because they don't help anyway. But your vitamin B idea I will follow. Could not find this sublingual version in pharmacies here and so I ordered it at Lazada. Perhaps it really helps. If it does I will let you know. 

 

If not I perhaps will ask a doctor to give me MTX to check if this works. But I really want to avoid such drugs that suppress the immune system if possible. Especially now with Covid. In addition such DMARD can have severe side effects.

Posted
On 6/23/2021 at 7:03 PM, Mickeymaus said:

Never heard of sublingual drugs. Normally I don't order medication at Lazada. There is enough other fake. But I will try. I know that vitamin B absorption is not easy. Supplements just make your toilet experience more colourful because the dosage is very high because only a small amount is absorbed.

 

I herb  company is used by many here in Thailand as a source for vitamins and supplements.    Great choice and prices.   Keep orders around 60 dollars ( 1600 baht or so)

and get here no problem.     I mostly order the NOW  brand ..... but they have many.

If a first time order......when google write in iherb america ...... or you will probably be directed to site in Malaysia or elsewhere

Posted

Possibly a stupid question......is it definitely the joints?.......a friend of mine used to get something similar once or twice a year, very acute........fingers looked like pork sausages.......he was told it was tendonitis (just in his fingers and toes????).....no treatment...no cause discovered......just had to take pain killers and wait for it to settle down.

Posted
16 minutes ago, rumak said:

 

I herb  company is used by many here in Thailand as a source for vitamins and supplements.    Great choice and prices.   Keep orders around 60 dollars ( 1600 baht or so)

and get here no problem.     I mostly order the NOW  brand ..... but they have many.

If a first time order......when google write in iherb america ...... or you will probably be directed to site in Malaysia or elsewhere

Thank you. Normally I order at Vitacost but this time I did not want wait so long. If I want to pay at iherb with PayPal they always ask me for a credit card. Vitacost doesn't ask for one.

 

What I forgot to mention when I wrote about the pills I have tried. I still take pills with fish oil and turmeric and eat ginger every day. But it does not change anything too. 

Posted
4 minutes ago, Surelynot said:

Possibly a stupid question......is it definitely the joints?.......a friend of mine used to get something similar once or twice a year, very acute........fingers looked like pork sausages.......he was told it was tendonitis (just in his fingers and toes????).....no treatment...no cause discovered......just had to take pain killers and wait for it to settle down.

This is exactly the problem. There is no swelling or anything else to see. Not even on an x-ray. And all tests done several times were negative. I had the same with my knee pain 20 years ago. I went to many doctors. And when a doctor at one of the most expensive hospitals in Thailand told me for a lot of money "I have never seen anything like this" I gave up. 

  • Thanks 1
Posted
On 6/23/2021 at 11:15 AM, Sheryl said:

And again: where in Thailand are you?

 

You've got more patience than me. Still no answer.

Posted
26 minutes ago, KarenBravo said:

You could, of course adjust your diet. You can get all the minerals and vitamins you need from your food.

As people age they often become less able to absorb B12 due to dimished or absent intrinsic factor. Diet won't help in that situation. B12 needs to be supplemented either by injection or sublingually. (Note we do not know if B12 deficiency  is OP's problem or not).

Posted
54 minutes ago, Mickeymaus said:

I read a lot about these nerve problems on the Internet now. But I don't have these symptoms. I have also no diabetes or any other known health problems. I am 66. This problem started from one day to the other. Suddenly I had a small pain in all my toes and fingers when I moved them. On the next day I even had it in both wrists, in the knees, the elbows, the jaw and other joints. But this disappeared after a few days and since then I only have it in all toes and all fingers. Now for about 8 months.

 

I tried pills like Celebrex, Diclofenac, Naproxen and others but they didn't change anything. Not even the pain disappeared. I even tried Prednisolone but only for 1 week. I stopped taking pills because they don't help anyway. But your vitamin B idea I will follow. Could not find this sublingual version in pharmacies here and so I ordered it at Lazada. Perhaps it really helps. If it does I will let you know. 

 

If not I perhaps will ask a doctor to give me MTX to check if this works. But I really want to avoid such drugs that suppress the immune system if possible. Especially now with Covid. In addition such DMARD can have severe side effects.

You absolutely should not try to pressure a doctor into prescribing these very serious medications for a disease you cleatly do not have.

 

Again: see a neurologist.

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