Potential diagnosis

Chelle

Sorry for the long message. Just a bit of background. I’m 32, been having symptoms for almost a year now and I’m absolutely stumped as to what it is. I am a physician but don’t have much rheumatology experience so it is frustrating me even more. My symptoms are:
Painful joints (mostly ankles/feet/hands) always in the morning or after rest
Extreme fatigue
Frequent mouth/tongue/throat ulcers
Frequent sore throats
Scalloped tongue and swollen lips
Poor temperature regulation
Frequent flu like symptoms
Diarrhoea/vomiting
Night sweats
Morning sickness
Peripheral oedema up to knees
Lacking motivation
Hair loss
One episode of blue nail beds
Chronic rhinitis

It has completely taken over my life. I spend a lot of time in bed. Looking to find answers I have had regular blood tests. My ESR is always above 30 and is usually 37-43. My CRP is around 20-30 yet my WBC are always normal. Rh factor was ‘positive’ once at 13.5 but negative 3 other times, all ANA negative, anti-CCP negative. Lupus anticoagulant weakly positive, e-GFR between 65 and> 90. Liver, thyroid, U&Es, vitamins, FBC all normal.

It’s taken me almost 5 months to get referred to the rheumatologist and now I’m waiting another month for an appointment. Does anybody have similar issues? Or any pointers as to what it could be? Or even what I might expect to happen next? Really struggling quite a lot with this.

stickywicket

Hi and welcome

What a pickle! And how difficult and frustrating for you!

I doubt I'm going to be much help. I've had RA (and consequently OA) for most of my life. I can certainly relate to some of your symptoms but, frankly, not many.

These, I can relate to:
Painful joints
Extreme fatigue (when flaring)
Flu like symptoms (only when flaring badly)
Chronic rhinitis (Totally unrelated, I think. It came on many years later.)

Please feel free to ask any questions and I'll try to answer but this doesn't seem to bear much relation to my RA. The only thing I can recommend right now is that you try not to overdo the bedrest and try some of the gentle range-of-movement exercises that you'll find here https://www.versusarthritis.org/about-arthritis/managing-symptoms/exercise/ Exercise (plus DMARDS and surgery ) is / are what's kept me mobile all these years.

Please keep in touch and let us know how you get on.

Chelle

Hi there,

Thank you for your reply, perhaps some of my symptoms aren’t related. I shouldn’t admit this but I overuse Sudafed decongestant which is bad bad bad! And probably causing the rhinitis.

I’m actually on holiday right now, in fact I am on the return flights WiFi and my joint pains haven’t been half as bad when it’s been warm. Don’t get me wrong still a bit stiff in the morning but much more manageable.

The problems I have had since I’ve been here have been oral to be honest. I get incredibly frequent ulcers and papillitis but I noticed my tongue was particularly indented this time also. My tongue must be so swollen that it’s forced into my teeth causing irritation and that’s what’s causing the ulcers and inflamed taste buds.

I can feel my tongue catching when it’s like this too. And it’s so incredibly painful. I can barely talk and eating is out of the question. Earlier on I was in the airport and so desperate to eat something that I put lots of salt in my mouth as I had no bottled water to dilute it! Ten minutes later I spotted a pharmacy!

It’s funny because up until two years ago I got frequent laryngitis too. At least monthly I would lose my voice completely for a few days. I couldn’t have so much time off work so in the end I was assigned a medical student who would help me do the talking! I got referred to ENT and I had an enormous cyst on my larynx. The consultant said it wouldn’t cause symptoms but removed it anyway a few weeks later and I’ve never lost my voice since!

Another new symptom which is a bit more topical is incredible tenderness to my knees. Not the patella but the tibial plateau. It isn’t painful when I walk or at rest but if I kneel down, even with a cushion underneath, the pain is so intense it causes me to almost black out. Around the same time I noticed the oedema. I’ve always had ankle oedema after standing or sitting for a long time. I put it down to being female and of the other persuasion but now even if my ankles are fine the swelling over the knee is quite severe!

I’m so sorry for the essay but it’s nice to talk about it with people who might understand. I personally am leading towards something like lupus but again it doesn’t completely fit (Negative Antibodies)

I do have pictures but they seem to be too big for the website and I don’t know how to make them smaller!

[Deleted User]

Hi Chelle,

I hope you are as well as possible today, I cannot kneel, this began before (or possibly as the first symptom ) of OA. I first managed with a cushion and knelt not on the knee but a bit further along the tibia, not for too long but it worked. It was also one knee first then both knees. However my mum who has no OA at all can’t kneel on one of her knees.

I’m one of those who is great at giving advice but lousy at following it, so being a physician, what would you advise your patient to do if they presented with your symptoms? Have you started along the route of seeing the medical specialists who can work this out with you?

Here’s the link to our information on lupus

https://www.versusarthritis.org/about-arthritis/conditions/lupus-sle/

Take care
Yvonne x

stickywicket

I hesitate to suggest anything to a doc who will know far more than I do (although nearly 60 years worth of RA has certainlt taught me a thing or two about that ) but I know that uncertainty - especially health uncertainty - is horrible and that, in your situation, I'd welcome all suggestions, likely or unlikely.

So I'll leap in and ask could Behcets be a possibility? It might explain the ulcers, sore throats, sore knees and joint pain.

Chelle

moderator wrote:

Hi Chelle,

I hope you are as well as possible today, I cannot kneel, this began before (or possibly as the first symptom ) of OA. I first managed with a cushion and knelt not on the knee but a bit further along the tibia, not for too long but it worked. It was also one knee first then both knees. However my mum who has no OA at all can’t kneel on one of her knees.

I’m one of those who is great at giving advice but lousy at following it, so being a physician, what would you advise your patient to do if they presented with your symptoms? Have you started along the route of seeing the medical specialists who can work this out with you?

Here’s the link to our information on lupus

https://www.versusarthritis.org/about-arthritis/conditions/lupus-sle/

Take care
Yvonne x

Hi Yvonne,

I actually have an appointment with a rheumatologist now on the 9th December which is a huge step forward!

The knee pain is so bizarre because it’s not the knee itself but just below it. Perhaps it is the infrapatella bursae causing me issues but it came on bilaterally at the same time and there’s no visible tissue swelling other than the putting oedema. It’s not red or warm.

Thanks for the link that’s great!

Michelle

Chelle

stickywicket wrote:

I hesitate to suggest anything to a doc who will know far more than I do (although nearly 60 years worth of RA has certainlt taught me a thing or two about that ) but I know that uncertainty - especially health uncertainty - is horrible and that, in your situation, I'd welcome all suggestions, likely or unlikely.

So I'll leap in and ask could Behcets be a possibility? It might explain the ulcers, sore throats, sore knees and joint pain.

Hi!

Experience often counts for so much more! Also I’m not an arrogant doctor and always happy to learn! So I appreciate your input. Actually Behçets is second on my list of differentials. The only thing holding me back is the genetic component (tends to affect Turkish/middle eastern decent and I am very white British/Irish decent) and the fact I have no other skin/mucosal manifestations.

Great minds though......

Michelle

trepolpen

hi to forum & welcome to our world !!!

non of us are qualified to tell you , I was positive for RH & still took two years to tell me I had RA , you dont have to be posotive for RH to have RA but there are other immune arthritis

not every thing you list goes with arthritis but most do , but they need to get you something to help regardless , do you have the skin condition psoriasis , as that can cause something very similar to RA ?

Chelle

trepolpen wrote:

hi to forum & welcome to our world !!!

non of us are qualified to tell you , I was positive for RH & still took two years to tell me I had RA , you dont have to be posotive for RH to have RA but there are other immune arthritis

not every thing you list goes with arthritis but most do , but they need to get you something to help regardless , do you have the skin condition psoriasis , as that can cause something very similar to RA ?

Hi. Thank you for the welcome.

Again Psoriatic arthritis is something I have considered. I don’t get any skin manifestations at all. In fact I have relatively blemish free skin (apart from thousands of freckles). However I do actually know somebody with the condition which also has no skin manifestations!

Rheumatology is such a minefield!

dreamdaisy

Rheumatology has to be the most unglamorous of medical departments. Miracles do not happen, people never get better although they might be fortunate to go into remission for a while but once you're in, you're in for life. The causes of auto-immune arthritis are not fully understood by the experts, mis-understood by those who both do and don't have it and worthy of a curse for one's enemies.

From everything you have said you sound like a candidate but I am no expert, just a practising arthritic. I have PsA, OA and fibro and was always a candidate for the dross having been born with other auto-immune nonsense, lovingly passed on by two parents who were too lazy to have any of it themselves. DD

Chelle

dreamdaisy wrote:

Rheumatology has to be the most unglamorous of medical departments. Miracles do not happen, people never get better although they might be fortunate to go into remission for a while but once you're in, you're in for life. The causes of auto-immune arthritis are not fully understood by the experts, mis-understood by those who both do and don't have it and worthy of a curse for one's enemies.

From everything you have said you sound like a candidate but I am no expert, just a practising arthritic. I have PsA, OA and fibro and was always a candidate for the dross having been born with other auto-immune nonsense, lovingly passed on by two parents who were too lazy to have any of it themselves. DD

Ahhhh sounds like neurology. Something I have a little more experience with.

stickywicket

Chelle wrote:

The only thing holding me back is the genetic component (tends to affect Turkish/middle eastern decent and I am very white British/Irish decent)

Ah, but which of us knows what has gone on in the murky depths of our ancestry

Chelle

stickywicket wrote:

Chelle wrote:

The only thing holding me back is the genetic component (tends to affect Turkish/middle eastern decent and I am very white British/Irish decent)

Ah, but which of us knows what has gone on in the murky depths of our ancestry

Also very true!

felicityh

Hi! Sorry to hear you've been going through so much but glad to hear you have a rheumatology appointment next month.

I saw you mention Behcets disease - this was a diagnosis that was heavily considered by my doctors to begin with. I have psoriatic arthritis but some of my symptoms are mouth, throat & genital ulcers, fevers and blister type rashes, as well as the 'normal' arthritis symptoms of fatigue and joint pain and swelling. I was seen at the behcets specialist centre in London who told me that Behcets is very similar to spondyloarthropathies (including psoriatic arthritis) to the point that some doctors/researchers believe that it is actually another type of spondyloarthropathy. They told me that mouth and genital ulcers are a known feature of psoriatic arthritis as are the other symptoms I was having. Rheumatological conditions are all very confusing with a huge amount of overlap. If your immune system has gone 'wrong' in some way it doesn't always just follow the text book 'classical' presentations.
I hope the rheumatologist you see can get to the bottom of what is going on for you and that you can find a treatment that works for you.

Chelle

felicityh wrote:

Hi! Sorry to hear you've been going through so much but glad to hear you have a rheumatology appointment next month.

I saw you mention Behcets disease - this was a diagnosis that was heavily considered by my doctors to begin with. I have psoriatic arthritis but some of my symptoms are mouth, throat & genital ulcers, fevers and blister type rashes, as well as the 'normal' arthritis symptoms of fatigue and joint pain and swelling. I was seen at the behcets specialist centre in London who told me that Behcets is very similar to spondyloarthropathies (including psoriatic arthritis) to the point that some doctors/researchers believe that it is actually another type of spondyloarthropathy. They told me that mouth and genital ulcers are a known feature of psoriatic arthritis as are the other symptoms I was having. Rheumatological conditions are all very confusing with a huge amount of overlap. If your immune system has gone 'wrong' in some way it doesn't always just follow the text book 'classical' presentations.
I hope the rheumatologist you see can get to the bottom of what is going on for you and that you can find a treatment that works for you.

Hey thank you for your reply. That’s really interesting to know. I wasn’t aware of that! Less than a month until I see them now!

Butterfingers

Chelle wrote:

Sorry for the long message. Just a bit of background. I’m 32, been having symptoms for almost a year now and I’m absolutely stumped as to what it is. I am a physician but don’t have much rheumatology experience so it is frustrating me even more. My symptoms are:
Painful joints (mostly ankles/feet/hands) always in the morning or after rest
Extreme fatigue
Frequent mouth/tongue/throat ulcers
Frequent sore throats
Scalloped tongue and swollen lips
Poor temperature regulation
Frequent flu like symptoms
Diarrhoea/vomiting
Night sweats
Morning sickness
Peripheral oedema up to knees
Lacking motivation
Hair loss
One episode of blue nail beds
Chronic rhinitis

It has completely taken over my life. I spend a lot of time in bed. Looking to find answers I have had regular blood tests. My ESR is always above 30 and is usually 37-43. My CRP is around 20-30 yet my WBC are always normal. Rh factor was ‘positive’ once at 13.5 but negative 3 other times, all ANA negative, anti-CCP negative. Lupus anticoagulant weakly positive, e-GFR between 65 and> 90. Liver, thyroid, U&Es, vitamins, FBC all normal.

It’s taken me almost 5 months to get referred to the rheumatologist and now I’m waiting another month for an appointment. Does anybody have similar issues? Or any pointers as to what it could be? Or even what I might expect to happen next? Really struggling quite a lot with this.

Hi,

Sorry to hear you are going through all this! I understand how frustrating it is to not know what is happening to you! After a year and a half of going back and fourth to Gps with various problems but having normal blood tests every time (FBC, inflammtory markers, thryoid , liver, U and E etc), I have finally had my apointment with a rheumatologist and have been told I have got soem kind fo arthritis, she just dosent know what yet! After all these negative tests and an x-ray showing no SI damage, I was so relieved to hear validation that this wasn't just "all in my head". However,I don't have a typical pattern as it seems to affect both my small joints and my axial skeleton. I'm currently waiting on blood test results for RA aswell as other antibody screening tests and I'm told if these are negative it will be an MRI to screen for ank spon. Although I was initially relieved to know someone could see soemthign was wrong, I now feel a bit disheartened at the lack of a "label" and I'm currently on steriods which obviously only treat symptomatically and don't slow down disease progression! So in my mind the sooner they can fidn otu what is going on the better!
I am actually a medical student and we were doing rheuamtologi a few montsh before my apointment, which was quite frustarting as I then had a little bit of knowledge to freak myself out with differentials, but obviously not even a fraction of enough to actually think of a definitive diagnosis. Apologies I don't have any avdcie, but I thought sharing a similar experience might at least provide some reassurance!

[Deleted User]

Hi Butterfingers, great to have you on the forums.

Getting a diagnosis label is always good as it confirms that someone else recognises that it’s not “all in your head” and there really is a rational explanation that something is wrong.

It took us over 2 years in our house after loads of tests for this to happen. Unsurprisingly, the actual treatment didn’t change at all. Such is the nature of arthritis

The best advice is to continue to eat properly and exercise appropriately to maintain function in the joints affected. The Versus Arthritis has some good information pages on both and well worth taking a look.

Do join in on the forums and let us know how you get on.

Best wishes
Brynmor

stickywicket

Hi Butterfingers and welcome from me too

Please don't be too disheartened at the lack of a 'proper' label. Many people on here have gone for years without one. I was very easy to diagnose (RA) but it's quite difficult if the bloods don't oblige. Sero-negative types such as psoriatic (PsA), AS and some cases of RA are harder to diagnose precisely. However, as the meds are the same, it doesn't matter too much. The essential thing is to get a broad diagnosis of inflammatory arthritis and get on the DMARDS. I hope that happens soon for you.

Hi Chelle - I hope yours comes quickly too.

Chelle

Hi guys,

Thanks again for the replies. Butterfingers, you are correct that has provided me some comfort. I agree with the others though don’t worry about the label as long as you’re getting some relief.

I’ve had a strange couple of weeks since returning home from Sri Lanka in that I’ve had temperatures every day, mostly in the evening and terrible night sweats. I’d had diarrhoea while I was there and some vomiting so I went along to the hospital to be checked over and they ended up doing so many tests for all kinds of tropical diseases. Luckily they all came back negative but now that means that they are probably more symptoms to add to my list!

stickywicket

Just what you didn't need :roll: If you were on DMARDS I'd be wondering if you'd had a live vaccine before travelling but you've not even got tó DMARDS yet Of course, travel itself can cause problems even in the ultra-healthy - I'm thinking tummy bugs plus the varied assortment of bugs freely bestowed on us by the recycled air in planes.

The only other possibility that occurs to mei is that I think you said previously that you used sudafed a lot. I checked it out and I wonder if it might be responsible for at least some of your symptoms. (Eliminate some and a diagnosis of the others might be easier.) I was thinking especially of the mouth problems

Sudafed side effects
Get emergency medical help if you have any of these signs of an allergic reaction to Sudafed: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Stop using Sudafed and call your doctor at once if you have a serious side effect such as:

fast, pounding, or uneven heartbeat;

severe dizziness or anxiety;

easy bruising or bleeding, unusual weakness, fever, chills, body aches, flu symptoms; or

dangerously high blood pressure (severe headache, blurred vision, ringing in your ears, anxiety, confusion, chest pain, trouble breathing, uneven heart rate, seizure).

Less serious Sudafed side effects may include:

loss of appetite;

warmth, tingling, or redness under your skin;

feeling restless or excited (especially in children);

sleep problems (insomnia); or

skin rash or itching.

This is not a complete list of side effects and others may occur


https://www.drugs.com/sudafed.html

Chelle

Hey!

Great thinking actually! But it’s not the tablet/liquid I take it’s the nasal spray which is a different formulation.

These are the side effects of it:

Frequency not known

Cardiovascular effects; headache; hypersensitivity; nasal dryness; nausea; paraesthesia; visual impairment

This is a bit grim but as part of the work up at the hospital they did an HIV screening which was negative and I’m so happy about that because I had been worrying a little that the symptoms might fit!

Chelle

Hey,

Had my rheumatology appointment today and the consultant didn’t give me any indication of her thought process or ideas. I should have specifically asked. Anyway I had blood, hand,feet, chest X-rays and having ultrasound of my feet too!

I guess we will see

stickywicket

Well, that sounds thorough, at least. I hope something will come of it. Any suggestions as to how long before you hear?

Chelle

stickywicket wrote:

Well, that sounds thorough, at least. I hope something will come of it. Any suggestions as to how long before you hear?

My ultrasound is 7th Jan so I guess (and hope) sometime soon after that

Chelle

I got a copy of the GP letter today from the rheumatologist. It is very clear from the letter that she thinks I’m fine. She has listed all the symptoms I have and then said she thinks everything is due to me having dropped foot arches!!!!! I am beyond upset. My last ESR was 51 and I was in so much pain all over my body that day I knew it would be high. How can anyone say that’s to down to flat feet?

Genuinely don’t even know what to do. I feel so deflated and defeated. She will end up discharging me if the ultrasound is normal and I’ll be back to square one

[Deleted User]

Chelle

Sorry to hear about the letter you received. All you can do is wait and see what the ultrasound comes back with.
We are all here to support you on the forums if you want to speak to any of us.