Swollen leg ankles, nothing confirmed 're diagnosis

[Elsasmum]

Hi everyone, I've been feeling run down all year,tired etc, at first I thought it was winter blues. I was taking much longer to get ready for work, then about February i noticed i was putting on weight. I used to help look after my daughter's horses every weekday afternoon, then maybe 2/3 days then about twice a week. I was struggling doing jobs, getting breathless. About this time my ankles started swelling as soon as I got up, then both legs too. The right leg much worse like a tight band ankle , and edema up to top of calf. Rash appeared in patches , leg is warm and red compared to rest of leg. Very painful if knocked or prodded. DVT ruled out . My suggestion of Cellulitis as I had an itchy rash on right ankle for months previously to swelling, ruled out by GP. Even though the rash part was shiny . Had course of antibiotics as also found to have blood & protein in urine . First tests ,urine,blood , leg in May. Blood tests showed dehydrated kidney function. Had pelvic ultra sound scan .nothing conclusive. Chest X-Ray nothing conclusive. Stomach is bloated . GP once mentioned gallbadder, not going down that route atm. More bladder and kidney atm. Having Cystoscopy procedure later this week.

Does anyone have anything similar or comments that may help ?

I know it's a big ask, I'm just confused.

I rest a lot more, got a footstool to elevate legs. Swelling only goes in bed overnight btw.

Thanks ☺

[Lynora]

Not a good time for you.. pants, really!

When you say the swelling of the legs goes down overnight, do you mean completely? Does the swelling affect your toes? Have you had a cardiothoracic assessment?

[Elsasmum in reply to Lynora]

Hi Lynora, no i haven't had cardiothoracic assessment . My toes aren't affected. My legs and ankles first thing before i get up are back to normal and the skin pale, as soon as I stand up and start walking to bathroom the tightness starts in right ankle and legs start redenning. My leg stings having a shower ,and rash appears.

I forgot to mention prior to all this my flat feet were giving me gyp & been diagnosed with two Morton's nuromas in right foot. Some toes in left foot misaligned. Oddly enough feet aren't as troublesome since swelling.

I also forgot to mention a had a course of water tablets same time as antibiotics, which helped but GP won't prescribe again due to causing kidneys to dehydrate.

Thank you .☺

[Lynora in reply to Elsasmum]

What have they suggested for the dehydration? Are you having to drink lots? If the diuretics relieved the swelling, it could be a kidney problem. Hopefully the cystoscope will give more information. Let us know how it goes.

[Gladwin1907]

Your symptoms sound identical to mine. I'm in the middle of investigations myself. Had a heart scan , next on the list is a scan on my stomach after a chat with my cardiologist. I hope you find out what your problem is, I will update as soon as I know myself

[Elsasmum in reply to Gladwin1907]

Thank you and Good Luck yourself.

My appt was with consultant who arranged scan of bladder & kidneys for next day. He’s going ahead with cystoscope. Haven’t had any results at all. The leg isn’t swollen so much now, still rash paler,stings on & off all day, ankles improved too. Still a bit breathless. Am feeling better in myself which I’m thankful for. Just have to wait & see.

[Little-me81-5474]

Read my post I’ve had similar symptoms and after 2 years of thinking it was lymphedema I’ve had a kidney biopsy and I’ve just been told I have a very rare kidney disease. I put 7st on in less than a year and it was fluid, my legs and stomach were effected the most with the fluid.

[Elsasmum in reply to Little-me81-5474]

Thanks for your post, I hope you're getting the correct treatment now. That must have been quite a shock. Are you taking diuretics ?

As for myself my left leg swelled up too but I'd lost confidence in the GP & didn't go back. I have reflux and the most gripping pains round my waist if i strain , I think it may be a hiatus hernia but no-one believes me.

Results from blood test showed low white cells and thyroxine increased for 2 months. Different GP found missed heartbeat I was very breathless, I've had 2 ECGs and Echocardiogram and seen specialist, having 7 day monitor fitted Tuesday. Told to raise feet above heart and rest by GP. Specialist encouraged walking more and thinks breathlessness due to varicose veins. I am quite active again, edema much less but ankles start swelling when I get up in morning. Unfortunately I can't rest as much as if like to, and the advice I've been given seems contradictory. Ah well I'll know more after monitoring. Best of luck to you.

[Lynne-byn]

Hi I really feel for you as have a similar experience. My stomach been causing me problems for yrs, gallbladder, gallstones, hernia all ruled out and being past from pillar to post. My stomach, ankles and legs all hold fluid, some days better than others. They thought producing to much acid and were gonna operate, at the last stage consultant pulled back & after mths off waiting for another appointment, I've finally got one, but it's just for an opinion. I'm at the end of my tether, fed up being sick, sore and feeling like shit x

[Elsasmum in reply to Lynne-byn]

Hi there, sorry to hear how rough you’re feeling. Have your kidneys been ruled out for the oedema ?

Have you had an ECG etc ?

I hope you’re appointment is soon & maybe some explanation of your condition.

It’s hard to know the right questions to ask at the time, I usually think of something when it’s too late. 🙄

Is there anyone to support you ? That can be a great comfort 😊 There are some great people on this group , so knowledgeable and kind .

[Elsasmum in reply to Elsasmum]

Just an update, the 2nd GP who noticed missed heartbeat seemed dismissive of my stomach pain declaring it was muscle pain in ribs & pressed so hard on the left side I was aching the rest of the day! Yet another chest X-ray was declared normal. Due to my requesting Omeprazole every month and their refusal to put it on repeat prescription, a 3rd GP finally listened to me & agreed a hernia is possible. I went for a endoscopy but because I’d not had the 7 day heart monitor fitted - there were actually no working monitors available when I attended my appointment in November- the endoscopy was postponed awaiting the heart monitor results. I’m now fitted with said monitor but was given a 24 hour leaflet instead of 7 day one. The cardiac consultant said In November I shouldn’t still be taking Quinine , which I’ve been taking for years for leg cramps. I’ve stopped taking it after reading the US stopped prescribing it years ago! And the NHS also agree. Anyway I have a question; All the info I’ve read re monitors states its holster ones that either clip on to a belt or hang round the neck in a bag. Mine is stuck on to a sticker 😳 on my skin. Which bit do I press if I hear a bleep, is it the large centre one? Thanks in advance.

[Lynne-byn]

Hi huni they said bladder wasn't emptying properly, that I had a hernia, then it somehow disappeared 🤔the acid reflux test was off the scale. I've had ecg and normal, my bloods always come back fine even if I'm on my death bed with pancreas flare up or gastrointeritus. I've been waiting on this app from the start off the Yr when the consultant told me I'd be seen within 6wks. Its crazy x

[Elsasmum in reply to Lynne-byn]

Hi , thank you for responding I hope you’ve had your appointment now and some way to a diagnosis and treatment. I’ve only just seen your reply so I must apologise for not replying sooner. When I first posted I had no idea what was wrong and probably am on the wrong forum, I still have no idea either. I hope you’re feeling better X

[CEJF]

Wow, sounds exactly like me! Hospital ruled out DVT, was being investigated for possible PKD, but nephrologist has ruled that out too, as only one kidney cystic & enlarged and Kidney function is fine. Only thing that bloods show up is that I'm very anemic. So tired & breathless all the time. Been on WW to try & lose some weight (around 2.5/3 st overweight, a stone of that has gone on in the last 3 months), but so far, I've only lost 2lbs in 3 weeks. I also have stomach problems & have a 'large' hiatus hernia.

Dr also thought that I may have gallbladder issues, which is why I had the ultrasound that found the cystic kidney. I'm also having a lot of problems with my teeth & sinuses atm too. One GP has said that I probably have Fibromyalgia.

My problems started almost 2 years ago, when I started working full time in a small shop over the summer, standing all day, moving almost constantly, but not very far at a time.

The only answer I've had so far was from the last Dr I saw in A&E, who thought the swelling maybe due to the osteoarthritis in my knees. I had reconstructive surgery on my right knee almost 30 years ago & was told at the time that I would probably need a knee replacement by the time I was 40, but I'm a decade past that now. I'm wondering if all my symptoms are perimenopause related! Sorry for rambling on, but pleased (but in a sympathetic way) to find that I'm not the only one with these unexplained symptoms.

[Elsasmum in reply to CEJF]

Hi there , yes we do sound pretty similar, good on you for trying WW 👍🏻any luck so far? I’ve also put on a few stones, I thought last year was bad enough buying a size bigger 🙄 I’ve taken over dog walking, I still work part time even though I’m retired, I’m always on the go & even started back looking after our horse, but the weight hasn’t gone. I walk a lot & do about 11.000 steps on a busy day. Sometimes more. The cardiologist recommended being more active. I’m still waiting for the event monitor report 4 months later. I have a Fitbit watch which always tells me to breathe. I have a sleep app which often shows my heart rate drops for 10 minutes at a time below 50. GP (4th one) doesn’t seem concerned.

Regarding the waistline- mine feels like a solid shelf , don’t know how else to describe it. Not just a roll of fat, it is there for keeps, well I hope not really! Is that similar to you ? Do you have arthritis in your fingers too ? Mine are swollen especially round the knuckles.

I got conflicting advice - to raise ankles legs higher than heart , but most nights it’s the reflex that’s a pain so I sleep propped up . It was nice to hear from you , I look forward to good news from you or just another chat 😊