Myeloma Forum | Graham-C | Activity https://forum.myeloma.org.uk/members/graham-c/activity/ Activity feed for Graham-C. Mon, 20 Apr 2026 22:42:05 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 2142454a6853c59614259335554d9c51 Graham-C started the topic 'Telephone Appointments' - Subject Access Requests in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/telephone-appointments-subject-access-requests/ Fri, 18 Aug 2017 22:44:30 +0100 I had been singing the praises of Leicester Royal Infirmary and their ‘telephone appointment’ arrangement, I should have foreseen that it would all fall apart.

I consider myself to be a low risk MGUS patient and I am quite happy not to take up Haematology staff time in attending an appointment. The idea seems perfect for the hospital and enables…[Read more]

]]> 27f3968a3c72d86b9ce53380ef045ba7 Graham-C replied to the topic "Possible" MGUS 3 months ago,awaiting results of repeat blood/urine in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/possible-mgus-3-months-agoawaiting-results-of-repeat-bloodurine/page/2/#post-134667 Fri, 18 Aug 2017 12:10:58 +0100 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…[Read more]

]]> 41483f011d536b9c7ea186fa8fb0c1ca Graham-C replied to the topic "Possible" MGUS 3 months ago,awaiting results of repeat blood/urine in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/possible-mgus-3-months-agoawaiting-results-of-repeat-bloodurine/page/2/#post-134667 Fri, 18 Aug 2017 12:10:58 +0100 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…[Read more]

]]> 3e534e4b6ddb76c4eac2fd3b0b43ce65 Graham-C replied to the topic Newly Diagnosed MGUS in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/newly-diagnosed-mgus/#post-134546 Wed, 09 Aug 2017 20:49:53 +0100 I am at five and a half years of being MGUS and I could go another 10 years with no change. There isn’t any way to predict other than by having continuing blood tests. The progression rate is really quite small. Last year I had a small blip that caused some excitement but they took another blood test and it turned out simply to be an isolated blip…[Read more]

]]> d587e63b261a6ec4e2450b4328e8996b Graham-C replied to the topic Help! Not sure what it all means... in the forum Newcomers https://www.myeloma.org.uk/forums/topic/help-not-sure-what-it-all-means/#post-134475 Wed, 02 Aug 2017 21:54:18 +0100 In simple terms you could say that osteopenia is to osteoporosis what MGUS is to myeloma.

My mother has osteoporosis which is how I know about the DEXA scan. Perhaps your GP could recommend some simple dietary changes, but always keeping in mind your kidney situation. I take a vitamin D supplement but, in the UK that’s fairly standard and most…[Read more]

]]> 4dd66cd2a9ecd91c2ccebdfccf15456c Graham-C replied to the topic Help! Not sure what it all means... in the forum Newcomers https://www.myeloma.org.uk/forums/topic/help-not-sure-what-it-all-means/#post-134454 Mon, 31 Jul 2017 16:46:08 +0100 One quick point DoylerOz.

Have you considered a DEXA scan ? That measures bone density and seems appropriate considering you have mentioned fractures. Just because your symptoms haven’t led to a diagnosis it doesn’t mean that you are imagining them. Age, sex and other details determine if it’s appropriate for you but no reason you can’t discuss…[Read more]

]]> f5caee5bf137155f226e6903b03f3ac4 Graham-C replied to the topic Help! Not sure what it all means... in the forum Newcomers https://www.myeloma.org.uk/forums/topic/help-not-sure-what-it-all-means/#post-134450 Mon, 31 Jul 2017 11:52:39 +0100 I have been MGUS since January 2012 and the paraproteins have varied between 3.00 and 10.30 in that time. One similarity we share is that I have had kidney problems relating to kidney cancer in 2007 and I now have just the one kidney. One good thing is that the blood tests for MGUS include eGFR which is effectively a reflection of kidney…[Read more]

]]> 133c062f637480f6e058616c9e33254e Graham-C replied to the topic MGUS at 35 in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/mgus-at-35/#post-133565 Fri, 26 May 2017 14:37:58 +0100 At age 64 I have been diagnosed with MGUS for over 5 years. A diagnosis of MGUS isn’t a death sentence or a reason for undue pessimism. As much as I’d prefer to be without it, I do get regular blood tests taken which would highlight any unusual results. For me it is every four months as I accept that I am at low risk. Perhaps next time it will…[Read more]

]]> 1baecbc375af1b92a8d7a4c60dd233ed Graham-C replied to the topic "Possible" MGUS 3 months ago,awaiting results of repeat blood/urine in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/possible-mgus-3-months-agoawaiting-results-of-repeat-bloodurine/#post-133483 Mon, 22 May 2017 18:10:32 +0100 It would be wrong for me to advise you or make any recommendation or diagnosis but my experience may give some perspective to your situation.

I am a male of 64 years age and I have been MGUS for over five years and I currently have blood tests every 4 months with a call call to confirm the results to me which I make a note of. I consider that I…[Read more]

]]> c6ccaa1f3437c8998bc10d95039139cb Graham-C replied to the topic MGUS in the forum Newcomers https://www.myeloma.org.uk/forums/topic/mgus-4/#post-132164 Wed, 08 Mar 2017 00:48:46 +0000 I’ve been MGUS for 5/6 years and nowadays I get blood tests every 4/6 months with ‘virtual appointments’ which means that I get basic results by phone. I’ve had the odd small spike but overall I know that my results are low level and don’t merit more attention. I am happy with that and am thankful that I have been fortunate. I’m being monitored…[Read more]

]]> 83b52f48740927da78fddd7a4e0fa044 Graham-C replied to the topic New system to measure Paraproteins in the forum General https://www.myeloma.org.uk/forums/topic/new-system-to-measure-paraproteins/#post-131477 Wed, 11 Jan 2017 05:34:06 +0000 I wonder if it’s not so much a different method of measuring pp’s but more a different way of interpreting and reacting to changes in results. Just something to consider.

]]> 1f17e5308727f84064dc8e23d9c92047 Graham-C replied to the topic Possible MGUS? in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/possible-mgus/#post-130435 Fri, 11 Nov 2016 00:03:43 +0000 Nothing wrong with a little healthy hypochondria.

I’m no expert but the subtle but important point is that your results are referring, I presume, to healthy immunoglobulins whereas in this condition (MGUS/myeloma) the immunoglobulins being produced are clonal or faulty, and the risk is that their proliferation will harm other organs and people’s…[Read more]

]]> 991f5ab504b69961c8059b92399a6ddc Graham-C replied to the topic Hello smoulderers in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/hello-smoulderers/page/2/#post-130432 Thu, 10 Nov 2016 18:09:12 +0000 Hello Marian.

It does seem strange that you have paraproteins so high, and increasing, without more intensive investigation. In my case with MGUS and an increased reading of something like 10 they called me in unexpectedly, which caught me unawares. It turned out to be nothing but your results are very high.

The term ‘asymptomatic’ is…[Read more]

]]> 577905e80c60b0fb4138b141900ca704 Graham-C replied to the topic "High Grade MGUS / MM" in the forum Newcomers https://www.myeloma.org.uk/forums/topic/high-grade-mgus-mm/#post-130404 Wed, 09 Nov 2016 22:05:15 +0000 Hi Loulou.

To my untutored mind I would have thought that corneal involvement is unusual and indeed so is the fact that they discovered it at such a young age. The rule is that myeloma can affect any organ except the brain, but even though the normal route of affecting the bone is bad enough, the possibility of it affecting the eyes would concern…[Read more]

]]> e5ed5485f661b112ddabeff8f4b0e0c9 Graham-C replied to the topic MGUS - Diagnosis versus Prognosis in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/mgus-diagnosis-versus-prognosis/#post-129492 Tue, 13 Sep 2016 20:09:15 +0100 Many thanks for your reply Debbie.

I have no problem with the hospital, doctor or the diagnosis of my low level MGUS. I only mentioned it because it was an interesting anomaly and one that will have future implications for me, if only meaning that prognostically they are of no value in my case.

The more relevant point to me personally, that…[Read more]

]]> 42e04ca043265f489259bc1d05437d99 Graham-C started the topic MGUS - Diagnosis versus Prognosis in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/mgus-diagnosis-versus-prognosis/ Mon, 29 Aug 2016 17:02:41 +0100 I won’t waffle as I am liable to do. I’ll simply present my own situation and an unusual set of results that have me puzzled.

DIAGNOSIS

I am MGUS at an unremarkable level and have been for some years, apart from a recent blip that has gone back to normal levels. I am now to be reviewed at six monthly intervals with a phone contact to advise me…[Read more]

]]> 91021fa941679837870f11065bb1c592 Graham-C started the topic MGUS - Diagnosis versus Prognosis in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/mgus-diagnosis-versus-prognosis/ Mon, 29 Aug 2016 17:02:41 +0100 I won’t waffle as I am liable to do. I’ll simply present my own situation and an unusual set of results that have me puzzled.

DIAGNOSIS

I am MGUS at an unremarkable level and have been for some years, apart from a recent blip that has gone back to normal levels. I am now to be reviewed at six monthly intervals with a phone contact to advise me…[Read more]

]]> 79b7c918abb99b1a41227e48d97ef652 Graham-C started the topic MGUS - Diagnosis versus Prognosis in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/mgus-diagnosis-versus-prognosis/ Mon, 29 Aug 2016 17:02:41 +0100 I won’t waffle as I am liable to do. I’ll simply present my own situation and an unusual set of results that have me puzzled.

DIAGNOSIS

I am MGUS at an unremarkable level and have been for some years, apart from a recent blip that has gone back to normal levels. I am now to be reviewed at six monthly intervals with a phone contact to advise me…[Read more]

]]> bdadda74038d7506720ac7dee784a02a Graham-C replied to the topic Symptoms of Myeloma or symptoms of depression? in the forum Newcomers https://www.myeloma.org.uk/forums/topic/symptoms-of-myeloma-or-symptoms-of-depression/#post-128907 Fri, 22 Jul 2016 12:04:54 +0100 In my humble opinion the worst possible thing is to remain indoors facing the same four walls day after day. My mother is 93 and severely affected by osteoporosis and for her benefit, and mine too, I take her out once a week to a stately home or similar attraction. She has a collapsible wheelchair, that is necessary for any long walking stints,…[Read more]

]]> 6ba2aa26dafb43357fd31f11eae80b75 Graham-C replied to the topic Hello smoulderers in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/hello-smoulderers/#post-128757 Mon, 11 Jul 2016 02:24:33 +0100 Just to continue the confusing status of MGUS I’ll just mention that I was asked to call in at the hospital over my results and obviously they were significantly changed. At that time I felt no better or worse than usual. However since then I have endured a horrific cold virus over the past ten days. It’s like being in a tumble dryer with symptoms…[Read more]

]]> eb446652c4f7ddd7490d26412682a745 Graham-C replied to the topic Hello smoulderers in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/hello-smoulderers/#post-128746 Wed, 06 Jul 2016 23:32:07 +0100 Hi Heather.

I have always felt that my immune system and reactions were unpredictable and sometimes absent or over reactive. I gave up having winter flu jabs after I had a particularly bad reaction some years ago and it was undoubtedly down to the the vaccine. More recently, since Haematology have become more excited about my results (which I…[Read more]

]]> 143b4139d61cb9ef0212cd1c31e398b1 Graham-C replied to the topic Newly diagnosed with MGUS in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/newly-diagnosed-with-mgus/#post-128651 Wed, 29 Jun 2016 15:41:39 +0100 Just to clarify something, in MGUS paraproteins are a marker for all patients and the kappa/lambda ratio is also relevant to everyone. I have had a kidney removed and I pay particular attention to the eGFR figure which is a measure of kidney efficiency because that is an organ that can become affected.

On your tests IgG relates to one particular…[Read more]

]]> 270963a6ffd0d5ec84330d72eff51249 Graham-C replied to the topic Newly diagnosed with MGUS in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/newly-diagnosed-with-mgus/#post-128625 Tue, 28 Jun 2016 21:48:57 +0100 I’m sorry to her about your experience jaylo47 and it does appear that there is a much better set up in Leicestershire as you say, where I live.

The benefit of being referred to a specialist is that you’ll enter a regular regime of tests which are then monitored by an expert. I started off with a whole body skeletal scan and bone marrow biopsy. M…[Read more]

]]> 16babc78363b5adaa80b535875bb2070 Graham-C replied to the topic MGUS - maybe changing ? in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/mgus-maybe-changing/#post-128622 Tue, 28 Jun 2016 19:34:15 +0100 That was unexpected. I was having blood tests every 3/4 months with a nurse due to call me with results which was a reflection of my very low risk category, and I was happy with that. In fact I had been thinking I might be discharged.

The phone call last week asking me to call in to the hospital suggested that things had changed but, even then,…[Read more]

]]> 5d2867e1af55f59c0473c09cb5138743 Graham-C replied to the topic MGUS - maybe changing ? in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/mgus-maybe-changing/#post-128622 Tue, 28 Jun 2016 19:34:15 +0100 That was unexpected. I was having blood tests every 3/4 months with a nurse due to call me with results which was a reflection of my very low risk category, and I was happy with that. In fact I had been thinking I might be discharged.

The phone call last week asking me to call in to the hospital suggested that things had changed but, even then,…[Read more]

]]> 035bdc98b4723bd87d1312a6acd8f8cf Graham-C started the topic MGUS - maybe changing ? in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/mgus-maybe-changing/ Mon, 27 Jun 2016 14:13:34 +0100 I haven’t posted recently because nothing much has changed until now.

Having been rolling along with MUGUS quite happily for a number of years I had become quite accustomed to having the regular blood tests with nothing exceptional happening.

Being MGUS I consider that I should not be having symptoms and, any symptoms I do have cannot be…[Read more]

]]> f43cae18db4ce59b43468fbe8c721a03 Graham-C started the topic MGUS - maybe changing ? in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/mgus-maybe-changing/ Mon, 27 Jun 2016 14:13:34 +0100 I haven’t posted recently because nothing much has changed until now.

Having been rolling along with MUGUS quite happily for a number of years I had become quite accustomed to having the regular blood tests with nothing exceptional happening.

Being MGUS I consider that I should not be having symptoms and, any symptoms I do have cannot be…[Read more]

]]> fc806f51192057a0aad70f21a066b510 Graham-C started the topic MGUS - maybe changing ? in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/mgus-maybe-changing/ Mon, 27 Jun 2016 14:13:34 +0100 I haven’t posted recently because nothing much has changed until now.

Having been rolling along with MUGUS quite happily for a number of years I had become quite accustomed to having the regular blood tests with nothing exceptional happening.

Being MGUS I consider that I should not be having symptoms and, any symptoms I do have cannot be…[Read more]

]]> b2623579bc8cb91440a223db78c5bd93 Graham-C replied to the topic Continuously declining eGFR in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/continuously-declining-egfr/#post-124657 Mon, 19 Oct 2015 19:53:26 +0100 Thanks for your kind thoughts Chrissie but, if I appear to be in mental torment, it’s probably more to do with my style of writing than how I actually feel. As regards MGUS I must be at the lowest risk level from my blood tests, though there is always that risk. It’s just the inconvenient kidney function test results. Alongside that my ‘flavour’…[Read more]

]]> a10cee8269d43bda06d176b39e658e11 Graham-C replied to the topic Continuously declining eGFR in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/continuously-declining-egfr/#post-124635 Sat, 17 Oct 2015 12:01:09 +0100 The fact is that I should have been referred to Nephrology before now due to my declining kidney function because I fall well within the NHS and NICE referral guidelines.

However, and this is a good reason for knowing your results and the implications, my current results don’t put me at any immediate risk. I know that my GP won’t refer me without…[Read more]

]]> cbd2a1137ac848143e18d6b49970a6d9 Graham-C replied to the topic Continuously declining eGFR in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/continuously-declining-egfr/#post-124635 Sat, 17 Oct 2015 12:01:09 +0100 The fact is that I should have been referred to Nephrology before now due to my declining kidney function because I fall well within the NHS and NICE referral guidelines.

However, and this is a good reason for knowing your results and the implications, my current results don’t put me at any immediate risk. I know that my GP won’t refer me without…[Read more]

]]> 5b82bab7eb6a02488ee263dbf7b2d710 Graham-C replied to the topic Chemists - my own rant in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/chemists-my-own-rant/#post-124571 Sat, 10 Oct 2015 16:17:21 +0100 I’m a little surprised to find that the NHS has posted my comment on the surgery review site but it’s well deserved. They overlooked the original change of prescription and, when I pointed it out, they prescribed only half the medicine and when I pointed that out, they did nothing.

I’m a little concerned that since they amalgamated local…[Read more]

]]> 43630fd9f99af9fcbe81670b03889d8f Graham-C replied to the topic Chemists - my own rant in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/chemists-my-own-rant/#post-124563 Fri, 09 Oct 2015 16:33:18 +0100 I consider myself to be a very polite, pleasant and easy-going person but I do have limits.

I cancelled my automatic prescription with the old chemist as the whole process was completely random and I don’t need the extra exercise of calling in on them daily to discover whether or not they had my medicines. With winter coming I considered that…[Read more]

]]> c01cd522bd75accae45030e61386ff75 Graham-C replied to the topic Chemists - my own rant in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/chemists-my-own-rant/#post-124563 Fri, 09 Oct 2015 16:33:18 +0100 I consider myself to be a very polite, pleasant and easy-going person but I do have limits.

I cancelled my automatic prescription with the old chemist as the whole process was completely random and I don’t need the extra exercise of calling in on them daily to discover whether or not they had my medicines. With winter coming I considered that…[Read more]

]]> 418b5be47eed4e1144695a57ffaf9c3e Graham-C replied to the topic Vaccination in the forum General http://www.myeloma.org.uk/forums/topic/vaccination/#post-124503 Mon, 05 Oct 2015 05:34:56 +0100 After an experience I had several years ago I will never have another flu jab. There was no doubt as to what the cause was as the site of the jab came up in a hard lump and I had the worst case of flu ever. To add to that it badly affected the shoulder muscle (the site of the injection) and I had difficulty putting on a jacket for months…[Read more]

]]> b5e004ed0b92cb00940ffe2583554771 Graham-C replied to the topic Starting Stem Cell Therapy in the forum Newcomers http://www.myeloma.org.uk/forums/topic/starting-stem-cell-therapy/#post-124377 Mon, 28 Sep 2015 00:25:26 +0100 Needless to say the forum doesn’t need spam posts peddling dubious foreign prescription services.

–SPAM DETAILS REMOVED–

Respectable organisations don’t hide their identity behind a privacy protection service and the website was created less than a month ago.

This website, which has been in business for 7 years,

No it hasn’t

— Edit by…[Read more]

]]> 55be717991bc5ab70fcfed2938a29aff Graham-C replied to the topic Starting Stem Cell Therapy in the forum Newcomers http://www.myeloma.org.uk/forums/topic/starting-stem-cell-therapy/#post-124377 Mon, 28 Sep 2015 00:25:26 +0100 Needless to say the forum doesn’t need spam posts peddling dubious foreign prescription services.

 

Respectable organisations don’t hide their identity behind a privacy protection service and the website was created less than a month ago.

This website, which has been in business for 7 years,

No it hasn’t

— Edit by WebTeam

Hi Graham
Thanks for…[Read more]

]]> 009a4ca83dac0d8910c5105c58c96c9c Graham-C replied to the topic Starting Stem Cell Therapy in the forum Newcomers http://www.myeloma.org.uk/forums/topic/starting-stem-cell-therapy/#post-124377 Mon, 28 Sep 2015 00:25:26 +0100 Needless to say the forum doesn’t need spam posts peddling dubious foreign prescription services.

Website WHOIS

Domain Name: MEDICSHEALTHSUPPLIES.COM

Registry Domain ID: 1957182373_DOMAIN_COM-VRSN

Registrar WHOIS Server: whois.tucows.com

Registrar URL: http://tucowsdomains.com

Updated Date: 2015-09-03T08:35:18Z

Creation Date:…

[Read more]

]]> 0bee8315754a6a06c6756753e5e16adf Graham-C replied to the topic Starting Stem Cell Therapy in the forum Newcomers http://www.myeloma.org.uk/forums/topic/starting-stem-cell-therapy/#post-124377 Mon, 28 Sep 2015 00:25:26 +0100 Needless to say the forum doesn’t need spam posts peddling dubious foreign prescription services.

Website WHOIS

Domain Name: MEDICSHEALTHSUPPLIES.COM

Registry Domain ID: 1957182373_DOMAIN_COM-VRSN

Registrar WHOIS Server: whois.tucows.com

Registrar URL: http://tucowsdomains.com

Updated Date: 2015-09-03T08:35:18Z

Creation Date:…[Read more]

]]> e3fa594e5ac7d9aa7bda668b273ae277 Graham-C replied to the topic Extremely confused :-/ in the forum Newcomers http://www.myeloma.org.uk/forums/topic/extremely-confused/#post-124324 Wed, 23 Sep 2015 16:01:43 +0100 I would recommend that you make a Subject Access Request for all medical documents. reports, tests and scans produced by the hospital department in respect of your husband’s treatment. It’s a simple procedure and the hospital  website will detail how you go about it.

The maximum cost they can charge is £50 and they are legally obliged to fulfil y…[Read more]

]]> fad281e7bf3c2e3ec86568e45bf72dad Graham-C replied to the topic Chemists - my own rant in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/chemists-my-own-rant/#post-124301 Mon, 21 Sep 2015 16:09:18 +0100 Having turned up today at my chemist for the third time to collect the remnants of my prescription I thought I was going to be let down again judging by all the searching they were doing. I was feeling very unwell, and not a little soggy, so I terminated our relationship without further ado.

Chemists trumpet this new Electronic Prescription…[Read more]

]]> c1bcc97a8102217440de87c98d8305ae Graham-C replied to the topic Sooo frustrating.... in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/sooo-frustrating/#post-124197 Thu, 17 Sep 2015 09:50:03 +0100 I like to think that I’m fortunate that the condition is being monitored, particularly when I read posts like the recent one by a person who only discovered the illness when they suffered critical spinal and kidney damage. I’m sure that there are many people with MGUS who don’t know it and are at risk of a very nasty shock.

]]> 6dd6b886cefa021512470fe107eea9e5 Graham-C started the topic Chemists - my own rant in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/chemists-my-own-rant/ Mon, 14 Sep 2015 17:24:58 +0100 I receive prescriptions for other conditions, though it is accurate to say that I only actually get them on the agreed date about 50% of the time. As my GP surgery is now in a brand new purpose built building with an on-site chemist you’d think the system would work better, especially as they boast of having an electronic system. It appears to be…[Read more]

]]> 05023c4d34f20587fb5ae23f6d73cd85 Graham-C replied to the topic Continuously declining eGFR in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/continuously-declining-egfr/#post-124085 Fri, 11 Sep 2015 13:10:58 +0100 A good result that puts my mind at rest. My GP rang me to confirm that I have been put on the CKD register and she asked if I wanted anything else done, to which I replied ‘No’. It may seem that my request was pointless but I have another eGFR coming up and I want to know that result first, when I’ll also be informed whether or not my PP’s/FLC’s…[Read more]

]]> 031ebc4ce7426d734561337da751202c Graham-C replied to the topic Sooo frustrating.... in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/sooo-frustrating/#post-124045 Wed, 09 Sep 2015 20:23:21 +0100 Having a quiet ‘rant’ is good for you and I know how you feel.

In Leicester they devised a wonderfully bizarre system for notifying patients of results that didn’t work, created confusion and didn’t actually inform me of results. They termed the phone calls ‘appointments’ so that when i received a text message confirmation of an ‘appointment’,…[Read more]

]]> acb957636b9b224116921382c204166c Graham-C replied to the topic Continuously declining eGFR in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/continuously-declining-egfr/#post-123806 Fri, 28 Aug 2015 13:32:41 +0100 For me, Chrissie, as long as I can demonstrate to myself that my results are steady, then I can discount any symptoms I experience as nothing to do with myeloma. Of course having had kidney cancer, my kidney function is of special interest to me especially as they are/it is at risk with this illness. This is made worse because information was…[Read more]

]]> 98b41fc8bbabcf3fbf2c3accb5b5a9bb Graham-C replied to the topic Continuously declining eGFR in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/continuously-declining-egfr/#post-123806 Fri, 28 Aug 2015 13:32:41 +0100 For me, Chrissie, as long as I can demonstrate to myself that my results are steady, then I can discount any symptoms I experience as nothing to do with myeloma. Of course having had kidney cancer, my kidney function is of special interest to me especially as they are/it is at risk with this illness. This is made worse because information was…[Read more]

]]> 3512d751740f85cea039547fbe6087d4 Graham-C replied to the topic Continuously declining eGFR in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/continuously-declining-egfr/#post-123806 Fri, 28 Aug 2015 13:32:41 +0100 For me, Chrissie, as long as I can demonstrate to myself that my results are steady, then I can discount any symptoms I experience as nothing to do with myeloma. Of course having had kidney cancer, my kidney function is of special interest to me especially as they are/it is at risk with this illness. This is made worse because information was…[Read more]

]]> 8d8016ef70908e11a8a6e1661ec10ea9 Graham-C replied to the topic Continuously declining eGFR in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/continuously-declining-egfr/#post-123714 Sun, 23 Aug 2015 19:20:41 +0100 After my bad experience with kidney cancer I do like to keep an eye on things. I am disappointed that no one mentioned my deteriorating eGFR to me and my GP seemed to be confused and actually gave me incorrect information.

I will write to my GP to point out my results and also quote NICE guidelines. My PP/FLC results  have been increasing but a…[Read more]

]]> 0caeb891e3c97e749992ae7f7585c162 Graham-C replied to the topic Continuously declining eGFR in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/continuously-declining-egfr/#post-123714 Sun, 23 Aug 2015 19:20:41 +0100 After my bad experience with kidney cancer I do like to keep an eye on things. I am disappointed that no one mentioned my deteriorating eGFR to me and my GP seemed to be confused and actually gave me incorrect information.

I will write to my GP to point out my results and also quote NICE guidelines. My PP/FLC results  have been increasing but a…[Read more]

]]>