[luciferParticipant]

Should also say that I’m from Ireland so maybe things are done a little differently here.

[misswoosieParticipant]

Lucy, so sorry about your miscarriages. Not surprised you were stressed and anxious afterwards.

I don’t know much about MM and all these protein levels etc even though I was a Clinical nurse specialist because my area then was anticoagulation (managing people who were on anticoagulants) and Deep vein thrombosis etc so wondering if  you’ve been checked for inherited thrombophilias ie <span class=”_Tgc _y9e”> antiphospholipid antibodies, lupus anticoagulant, anticardiolipin antibodies and anti-B2-glycoprotein?
</span>

I’m feeling OK yes. Just the usual joint and muscle aches and pains, balance problems and brain fog with problems spitting my words out ! Oh, and blurred vision sometimes. Some days I just feel like my head doesn’t belong to me. Difficult to describe/explain.When there’s stuff going on which involves being organised and remembering things I get exhausted. I can manage for a while, like when we bought this house in April and spent about 2 weeks decorating from top to bottom, but then my body just seems to say “enough”. Problem is I can’t sleep if I go to bed early (before about 12.30) and I always wake at about 7am, so I have to sleep in the afternoon if I feel like I need to catch up.

I was like this, only worse, over the Spring and early Summer last year and then I seem to have a good spell except in October when I had a tooth abscess and then a horrible groin abscess, but still felt relatively OK in myself until a mont or so ago when the joint pain/stiffness /clicking etc started coming back. Whatever it is seems to flare up, which, along with other symptoms is why they tested for Lupus antibody, although I had to twist their arms to get that.

I have wondered if I might have Coeliac disease or gluten intolerance as some symptoms and maybe the antibody results might fit. If I’m Vit K deficient (which I don’t know) because I’m not absorbing fat soluble Vits (my Vit D was low side of normal, but if you look at normal ranges elsewhere in the world, then abnormal) then that might explain why my blood clotting results were abnormal for a period of time last Summer. If I am then it’s not dietary deficiency as we eat lots of Vit K  rich foods, a lot of them raw. I take Vit D3 but not sure if it’s had any effect as those bloods were done privately last Summer and not had them repeated. GP won’t check Vit D unless calcium is abnormal.

Susan xx

[luciferParticipant]

Thanks Susan, I’m in a much better place now but typically now have this to deal with. My husband and I went to a fertility specialist and got a thorough check and everything was ok. Only thing that showed was low progesterone and I’ve been prescribed pessaries as a result. I was extremely stressed out last year and I believe the miscarriages were down to that. Might sound silly to some but I also wouldn’t be surprised if stress has played a role in this trace paraprotein either. Going to get back into exercise and look after myself more from now on.

 

You sound like you’re really going through the wars healthwise. Hope things improve soon for you. Must be horrible feeling so sick, you poor love.

 

Please keep me posted on everything, as I will you. Enjoy your hols Susan!

 

Ps. We just moved house too. Still unpacking!

 

Best wishes,

 

Lucy xxx

[misswoosieParticipant]

Good that you had all the tests by a fertility specialist. I think stress affects us more than we think. you hear of people who have problems trying to conceive and go through fertility treatment with no success and then after they stop all the treatment  they conceive naturally. I hope that you can get things sorted and that the monster protein crawls off into a hole somewhere. Not nice feeling  like your in limbo healthwise.  I too had had a very stressful event ( eye witness arson of a neighbours flat in the block of flats we lived in-still ongoing Crown Court case after nearly 2 years) just before I started with a lot of this, plus I’m an only child with elderly parents who need more input nowadays, however some of the health probs have been with me for a long time.

Looking forward to hols especially as it’s pouring down here today !

Keep me updated,

Best Wishes,

Susan xx

[luciferParticipant]

Hi Susan, how are you? Did you get a follow up with your hematologist? Xx

[misswoosieParticipant]

Sorry for delay, but I had to reset my password and it was so fussy about password strength  and I was so tired at the time with brain fog I just gave up! I’m just waiting to go for my next lot of monitroing bloods and did manage to get GP (he was running 20mins behind so just wanted us out) to re refer to haematologist so have appt in October. Still have exactly the same problems which are particularly bad at the moment. Now I also have developed palmar erythema (red palms where wrist meets heel of your hand and discomfort/fullness on right side under my ribs. As far as I know I’ve never had abnormal liver function tests, but wonky liver might fit with the 2 or 3 months last year when my blood clotting was abnormal. Might also explain my pale,floating stools! GP (when he agreed to referral) also gave me Abx for my scalp “folliculitis”. It improved slightly when I was on them but came back with a vengence so at the moment I’ve got bald patches,bristles, scabs and hair loss . Also wondering if I have a urine infection as I keep getting sharp pains in either groin and a bit of  cystitis feeling after I pass urine. Balance is dreadful. Went for a short walk when we went out for a drive on Sunday and I didn;t have my walking (hiking) stick . I fell over twice when I got my foot on some slightly uneven ground and just couldn’t rite myself. I’m still wondering coeliac,especially as now have the liver disease signs and have a long history (30 years plus) of depression and 15 years ago GP told me I had IBS, but never had a colonoscopy or anything.Very tired as usual but sleeping for England , which isn’t me. Joint stiffness and pain about the same.The only thing that’s good is my appetite which seems strange.  It was my 54th last weekend, but I look more like 64! How are you getting on? Have you had anymore tests?

[misswoosieParticipant]

Hi everyone. Just read through all my posts and realised I din’t say that my para-protein is in the IgM immunoglobulin. I only have measurement for IgM, so I assume that the monoclonal protein is so small it’s not measurable. Interestingly my IgM level is right at the top of the normal limit and had gone down between March and June (I don’t know what they were in Nov last year at the Haem’ appt) but IgA and G are both low and barely in range.  They had fallen between March and June. I believe I read that IgM MGUS are more likely to progress to Amyloid and that they need a closer eye keeping on, but I can’t remember where I read that or why they need a closer eye keeping on them! Brains like mush. No way I could work as a nurse anymore. We’ve moved so have a new GP but not had anything to do with them yet although my husband keeps nagging me to go and speak to somebody about my red palms. I know I should but just so tired of fighting.I’ll be having my next lot of blood tests in the next couple of weeks.I don’t know what my e GFR is because I don’t have any kidney function test results since July last year. At that time I had a spike in my Creatinine and my eGFR was 75 which I was a little perturbed about as that’s what my 80 year old mother’s is!

[graham-cParticipant]

Hi misswoosie

As regards paraprotein levels I’d use the analogy of people being measured for radioactivity, and we all have some level of radioactivity in our bodies since it’s in the environment all around us, especially in the rocks on which we live. Those living in areas with granite outcrops will be more radioactive than those living elsewhere.

The point being that ideally no one would have any detectable radioactivity in their body The ideal and perfect level being zero but that is unachievable. The same applies to paraproteins. You don’t want them but a large number of the population do, as I do too.

The important issue is the level and I can’t stress how important it is for you to know your results if you want some understanding of your own condition. The level itself is important but, beyond that, what the hospital will be most watching out for is significant change and trends. I have my results in a list over the part five years. It’s not that I’m smart, but I had kidney cancer ten years ago and I wasn’t told things, I was told things that weren’t true and it went badly wrong. I learned my lesson. Saying that I am not rude or aggressive with medical staff because of he past. I can achieve a lot more with charm and if you harass doctors they will ‘clam up’ on you.

My blood test results are my ‘comfort blanket’ and they give me the confidence to be calm and know what I’m talking about. As I write I am waiting for a call from the hospital with my latest results and I’m worried they’ll let me down, but I can handle that and remain charming too because I can submit a ‘Freedom of Information Request’ on them and they are legally obliged to  send me the results.

As regards eGFR, since I lost a kidney ten years ago, that is my specialist area, so to speak. My eGFR is in the 60’s and it has dipped into the 50’s before now. By knowing my figures I was able to tell the hospital/GP that my results had been falling so constantly over a period that under NICE rules I should be referred to Urology but, since 50 itself was no threat to me I chose to wait and see if results improved, and they did. I don’t want unnecessary treatment and, by knowing my figures, I could make that judgement.

As with paraproteins, what counts is the level and progression of test results. I have found it very beneficial to know my own results and track them and it has also meant that I don’t have to pester the hospital without good reason. The same with Free Light Chains.

Oh dear. A letter I have just received suggests that i won’t be receiving a call or my test results. They must be yearning for one of my FoI Subject Access Requests.

• This reply was modified 6 years, 8 months ago by  graham-c.

[misswoosieParticipant]

Thanks Graham. I’m not under follow up at a hospital, which is why I asked for a re-referral  to haematology a few weeks ago. I don’t have confidence in the GP’s and they’ve never discussed paraproteins with me and I haven’t  seen a haematologist since the paraprotein was picked up last November. As I said before, I used to be a Nurse Practitioner in acute care but I also worked on Intensive care for 10 years and my bug bear is being told “blood results are normal” or “no further action required”.Also had “mess ups” at hospitals, worst being at the hospital where I was working as a Nurse Specialist with a  misdiagnosed ruptured ovarian cyst with necrosis of ovary which nearly landed me in ITU, and would have done if I hadn’t insisted on an ultrasound scan, which they did as an OP 3 days after they discharged me.  Even with normal blood results I think it’s important to look at trends in blood results. In June last year my eGFR dropped to 70 but was back up to >90 in July. Don’t have anymore results. I calculated that eGFR myself. That’s a low eGFR for somebody my age with previously “normal” kidney function and at that time my Creatinine was in normal range.A year ago when I asked for print outs of results from an old GP, I discovered that a year before (2014) a new patient routine urine microscopy had shown considerable amounts of blood, white cells and protein despite the fact that a urine dipstick test only showed a trace of protein and I had no symptoms of a UTI. Nothing was ever done about it and when I mentioned it to last GP’s they said dipstick was clear and wouldn’t even send a urine off to the lab’.  My LFT’s were normal in July last year (last ones known to me) but my Alk Phos was on an upward trend over a period of just 2 months, although still in range.

Now I have intermittent urinary tract symptoms (pain after urination, sharp pains in both groins, urgency but passing small amounts of dilute urine) and signs which may indicate liver problems eg feeling of fullness  on the right side under ribs, pale stools and palmar erythema (red palms).

My weight is continuing to drop although not drastically. One thing that is good is my appetite which suggests nothing too major going on. I haven’t been as light as this since I was about 20.

I went to new GP for NP app’t with nurse and she’s got me an app’t next week with a Doctor (? consultant) who visits the practice weekly to see about my scalp and discuss all the other things and then Haematology in October.

Whilst I feel blood results are very important I think we’re becoming more like the US where test results are given higher priority than clinical history and examination.That I think is the reason why a lot of cancers aren’t picked up on till later on. Apart from too look at my head a Doctor hasn’t laid hands on me for 3 years and nobody seems capable of documenting a decent history. You go to GP and it;s a different Doctor and there’s no “recap” it’s just a case of dealing with the imminent complaint in isolation of anything else.Unfortunately I’ve grown very weary of battling with last GP re blood results etc, but I will be asking if I can have copies of ALL of the next lot that hopefully get done in the next 2 weeks or so.

When I did my advanced clinical skills course as a NP it was taught mainly by Consultants and Registrars and the emphasis was always on history. We spent 2 weeks on taking history’s in various scenarios (shortness of breath, chest pain, loss of consciousness etc) and were told that with a focused history answers to 3 appropriate questions will  give a fairly accurate choice of 2 or 3 possible diagnoses. Clinical exam then narrows it down and informs investigations. I think with “non-specific ” symptoms that often seem to be the presenting ones with auto-immune /connective tissue diseases it takes a little more time and clinical reasoning skills to get to where you need to be, but it’s still not rocket science.

Of course as my paraprotein is an Ig M then I’m also aware that AL Myeloid is more likely than MM.

Thanks very much for the feedback. Not sure where everyone had gone off to! I had to reset my password and it was very fussy about my password strength. Has everybody had to do this?

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