Confused and very frustrated!

[Damaged]

I had yet another urine sample and it came back as undo able! I am not certain what the problem is. The last one was contaminated. The blood work is what I find so confusing. I feel terrible and yet everything looks normal. My Rheumy has ordered ultrasound but I am concerned that they will not show what is happening. I am in crazy pain and still have bubbles/ foam in urine! I see my GP today. I am not certain what I should do. Should I repeat the tests? Give it up ?

Even when you are seropositive the outcome is the same. I seem to spend all my time trying to convince my doctors that something is wrong. All infections have gone untreated . My Rheumy has suggested that Rituxan will be more effective with MTX so I have agreed to both. I have no confidence in drugs but seem to have no options.

I would sincerely appreciate feedback from those with more experience. Is there any chance that drugs will make a difference after two years and no success?

[hatshepsut]

Yes.....don't despair. This is a devious disease at times, and it can take a long time to find THE treatment. .......... and then every new treatment can take 3 months to kick in. But all the time research is producing new and more effective methods and drugs. Nobody wants ts to be on these meds, but very often they are essential to get some sort of control over the potential damage. I've been battling for more than 10 years, at the moment I'm back at square one or worse. I'm taking baby steps atm,because of lifethreatning I infections, but I do believe that with the right support and drugs, I will get to a point where life is more worthwnile, and I will regain some of my abilities.

Good luck M xx

[Damaged in reply to hatshepsut]

I am waiting to hear from Artus group re infusion but have started MTX injections again. I have convinced myself to try for at least six months. My Rheumy feels the Rituxan works best with MTX. Already feel horrible. I am now reminded of why I stopped lol

[Gnarli]

Hi Damaged. I really feel for you and wish there was an answer. I have a 60 year history of UTIs and know exactly the pain and depression they bring. Both of my kidneys are scarred from repeated infection as a child. So far this year there have been four episodes of UTI for which have needed antibiotics and, without wishing to be crude, the foamy/bubbly smelly wee and discomfort at present make me suspect that I now have another. I've not had this many for years. Drinking as much water as possible, avoid caffeine as it irritates things, try barley water if you need your raw water flavoured, be scrupulous about always wiping front to back and (this is really disgusting) if the pain on having to go is very bad peeing in the shower soothes things. I don't know why your sample came back as 'undoable'. Sometimes its been wrongly stored before testing, not done in time, rubbish lab etc. Pester the GP because this needs treating.

Diagnosis of my sero positive RA was comparatively easy the treatment not so much. Still going through the "suck it and see" stage. I just have to trust the Rheumy knows what they're doing and pray it helps.

Hope this helps. Huge hugs

Jan

[Damaged]

Thank you Gnarli, it does help. I also developed a lump on my shoulder. Wow, systemic is right. It seems my entire body is wonkey! The array of symptoms are bizarre.

It seems I have developed Proteinuria! The lump is likely .

[Gnarli in reply to Damaged]

I don't know why I "liked" that 'cos it's not funny. Proteinuria? That's a new one on me, I thought that it was only eclampsia in pregnancy that caused that. Wrong, obviously. What sort of treatment have you been offered if you don't mind my asking?

I hope it all gets sorted for you soon. Hugs

Jan

[Damaged]

No treatment lol The bloods will monitor kidney damage and the lump is thought to be lipoma cyst ? Not sure I spelled that correctly. But they are fat deposits? It does not hurt so I would not do surgery anyway so see no need to have ultrasound.

He wants me to try Amytriptalean again? It is used for chronic pain , however, I have always been a demand about no psychotropic drugs.

I still have constant issues with burning, foam , smell etc. But GFRcreatinine levels are stable so GP says maybe early Proteinura. I did see articles on this when researching symptoms (bubbles, foam and oder).

It is frustrating that blood test etc do not reflect how badly you feel. So it is a wait and see lol

[Gnarli in reply to Damaged]

Hurry up and wait, eh? These lipoma thingies, they're a blooming nuisance apparently but nothing nasty. The fun just never stops does it?

[Damaged]

OMG, this new app is frustrating me. I have replied three times only to delete. Where are the kids when you need them lol

I was trying to say ,"it must be all the Irish ancestors I did not know about."😱

'Luck of the Irish". I still have urgency, burning, funky Oder. The test dip strip showed clear so no culture completed? What to do?