angieevangelou replied to the topic Multiple conditions in the forum Newcomers 7 years, 7 months ago
Hi
I got diagnosed with MS and MGUS (not active myeloma yet although high risk) both diagnosed six years ago then Chronic Pancreatitis and a blood clotting problem (had 3 arterial embolisms removed from arm 3 years ago) tachycardia plus psoriatic arthritis and raynauds disease most of my life.
Angelina
angieevangelou replied to the topic Lytic Lesion still MGUS ? in the forum Smouldering myeloma / MGUS 9 years, 7 months ago
Yvonnese
I get my blood test results from my GP surgery as i get them done there with the blood request slip heamatology give me at my 3 monthly appointment. I have had to fight to get them due to unhelpful and obstructive doctors receptionists so i complained to my gp and now i have to call to get gp to call me then see what the results are then…[Read more]
angieevangelou replied to the topic Heading for treatment in the forum Smouldering myeloma / MGUS 9 years, 7 months ago
Good Luck Mike
Thinking of you as you start some treatment…
Angelina.
angieevangelou replied to the topic Lytic Lesion still MGUS ? in the forum Smouldering myeloma / MGUS 9 years, 7 months ago
Thanks Graham my next appointment is on 23rd march and im going to ask more questions then 🙂
angieevangelou replied to the topic Lytic Lesion still MGUS ? in the forum Smouldering myeloma / MGUS 9 years, 9 months ago
Hi Graham
Thanks for the reply its really helpful to hear other peoples opinons/info. My sflc ratio is abnormal too but not sure what it is…Ive been being treated for anaemia since last august… my calcium and renal function has been fine but one of my other worries is that i am Iga MGUS and i believe that is harder to measure correctly so just…[Read more]
angieevangelou replied to the topic Lytic Lesion still MGUS ? in the forum Smouldering myeloma / MGUS 9 years, 9 months ago
Hi Graham
Thanks for the reply its really helpful to hear other peoples opinons/info. My sflc ratio is abnormal too but not sure what it is…Ive been being treated for anaemia since last august… my calcium and renal function has been fine but one of my other worries is that i am Iga MGUS and i believe that is harder to measure correctly so just…[Read more]
angieevangelou replied to the topic Lytic Lesion still MGUS ? in the forum Smouldering myeloma / MGUS 9 years, 9 months ago
Hi Mike
Thank you so much for your reply….it is really useful to me as i didn’t know about the different types of MRI and i am worried that I haven’t had any more imaging since 2011 despite having had bone pain (ribs and hips and lower back) since then (that’s why i first went to doctors in 2010 and led to my MS and MGUS diagnosis) It took a…[Read more]
angieevangelou replied to the topic Lytic Lesion still MGUS ? in the forum Smouldering myeloma / MGUS 9 years, 9 months ago
Hi Mike
Thank you so much for your reply….it is really useful to me as i didn’t know about the different types of MRI and i am worried that I haven’t had any more imaging since 2011 despite having had bone pain (ribs and hips and lower back) since then (that’s why i first went to doctors in 2010 and led to my MS and MGUS diagnosis) It took a…[Read more]
angieevangelou replied to the topic Lytic Lesion still MGUS ? in the forum Smouldering myeloma / MGUS 9 years, 9 months ago
Hi Mike
Thank you so much for your reply….it is really useful to me as i didn’t know about the different types of MRI and i am worried that I haven’t had any more imaging since 2011 despite having had bone pain (ribs and hips and lower back) since then (that’s why i first went to doctors in 2010 and led to my MS and MGUS diagnosis) It took a…[Read more]
angieevangelou started the topic Lytic Lesion still MGUS ? in the forum Smouldering myeloma / MGUS 9 years, 9 months ago
Hi
I’ve posted here before but not been on for a while. I was just wondering if anyone had a solitary lytic lesion found on skeletal survey (i had one survey in 2011 which showed a lytic lesion on my skull)and is still classied as MGUS ? My docs say they are just keeping a close eye on me when ive asked about it… I have appointments every three…[Read more]
angieevangelou posted an update 10 years, 1 month ago
@kp Glad you are ok….good luck for this week…its the uncertainty that is so hard to deal with i know x
angieevangelou posted an update 10 years, 2 months ago
@kp I havent been on here for a while and was just wondering how you are doing ? im still no nearer an answer just on 2 monthly appts and anaemic now…. Hope you are doing ok and have a good weekend…..Angelina 🙂
angieevangelou replied to the topic How confusing is this journey? in the forum Newcomers 10 years, 4 months ago
Susie, Ive had a couple of brain thoracic and lumbar mri’s as i have Multiple Sclerosis too…. always go in head first and just zone out and almost fall asleep…is quite warm on the table ! I do often wonder is my mris could show anything to do with Myeloma….I know there is not much communication between different departments at the hospital…[Read more]
angieevangelou replied to the topic Smouldering Myeloma or MGUS with Multiple Sclerosis andThrombosis in the forum Newcomers 10 years, 5 months ago
I’ve managed to put the MGUS to the back of my mind for a few years really whilst concentrating on MS diagnosis and tests and pain relief. What’s very difficult for me is that Myeloma Symptoms and MS symptoms are very similar… Bone Pain i have in various areas but i also have Psoriatic Arthritis and the rib pain could also be MS or even…[Read more]
angieevangelou replied to the topic Smouldering Myeloma or MGUS with Multiple Sclerosis andThrombosis in the forum Newcomers 10 years, 5 months ago
Hi Karen
Thanks for replying was wondering why i hadn’t had any !
Heamatology appointment was ok although my notes were missing again… 3rd appointment in a row at my hospital with no notes…different departments each time…
My paraprotein is stable but have had more bloods to see why my platelets are still so high….have never had any real…[Read more]
angieevangelou replied to the topic Newcomer: Should I ask to be screened for MGUS/myeloma? in the forum General 10 years, 5 months ago
All the burning pains and tingling etc are symptoms of MS…your MRI results may shed some light on your symptoms….my thoracic spine MRI was the thing that prompted other tests for MS…Hope it’s clear and the Light Chain Test is too as that should help put your mind at rest regarding MM … 🙂
angieevangelou replied to the topic Newcomer: Should I ask to be screened for MGUS/myeloma? in the forum General 10 years, 5 months ago
Hi Sara
My rib pain was constant all around my rib cage like a tight burning feeling with occasional stabbing pains in different areas…since my MS diagnosis i have learned from MS sites on internet that Rib Pain is often a symptom…its called the MS hug ! However all the symptoms of MS and Myeloma are very similar so its difficult for me to…[Read more]
angieevangelou replied to the topic Newcomer: Should I ask to be screened for MGUS/myeloma? in the forum General 10 years, 5 months ago
Hi
Im 46 and my biggest problem has always been Rib Pain Front and Back…this eventually led to tests which diagnosed Multiple Sclerosis and MGUS…no medic seems
to really know which disease causes my Rib Pain which is ongoing but controlled with pain relief… MRI’S/Lumbar puncture and bloods diagnosed the MS.
Angelina
angieevangelou started the topic Smouldering Myeloma or MGUS with Multiple Sclerosis andThrombosis in the forum Newcomers 10 years, 5 months ago
Hi
Im 46 and have been struggling to get any clear answers as to whether i have MGUS or Smouldering Myeloma since the MGUS showed up in blood tests 3 YEARS AGO…. i was suffering from extreme rib pain for 6 months then was finally diagnosed with Multiple Sclerosis after paying for a private MRI.At this time the MGUS was found but it took a year…[Read more]
angieevangelou replied to the topic Possible Myeloma ? in the forum Under 50s 12 years ago
Dear Kerry
Thanks for replying it's good to be in contact with someone who understands… Am waiting for results of Biopsy which hopefully will be back by Friday…Have been in a lot of pain in hip and back after procedure but went to doc yesterday and he said it's probably bruising deep down which hurts when i move my muscles…When was your…[Read more]