[angieevangelouParticipant]

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

[angieevangelouParticipant]

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 she gets them printed out and left at reception…much more complicated than it should be but we have a right to have copies of our results !
Angelina

[angieevangelouParticipant]

Good Luck Mike

Thinking of you as you start some treatment…

Angelina.

[angieevangelouParticipant]

Thanks Graham my next appointment is on 23rd march and im going to ask more questions then 🙂

[angieevangelouParticipant]

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 blood results dont always show the full picture. I most definitely dont want to have any treatment unless i need it but with my complex medical problems i feel i have to stay on top of all my medical treatments as there is not really any communication between my different consultants and GP’S aren’t what they used to be,they dont seem to co-ordinate care like they used to.Because of the MGUS I cant have any disease modyfying treatment for my MS which continues to worsen so Im really keen to catch MM at an early stage if i can…Im only MGUS but i suppose i am high risk because of the lesion…. I don’t know, it’s all very confusing but Im trying my best to keep on top of it all.
Thanks Again and Good Luck with your health issues…
Angelina

• This reply was modified 9 years, 4 months ago by  angieevangelou.

[angieevangelouParticipant]

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 year to get a referral to heamatology with MGUS as my gp was also very ill and i kept asking a series of locums and it never got done !I read somewhere that when SFLC get to 100 it’s worrying ? I haven’t had them done for 4 months as the last registrar said it wasn’t necessary and that it was too expensive. I’ve since had another appointment with a consultant who has ordered them for my next appointment at the end of march which will be 4 months since last one. I also had a fall last october and when i told dr at dec appointment that i was still in pain in my shoulder and arm he said we should x-ray it….Ive just received the x-ray request in post with no covering letter and had to ring to find out when to go and they told me that slip should have been sent to them not me…I am going to go get it done today as i am still in pain…

Thanks again i really appreciate your reply and wish you the very best of luck with your treatment.

Angelina

• This reply was modified 9 years, 4 months ago by  angieevangelou.
• This reply was modified 9 years, 4 months ago by  angieevangelou.

[angieevangelouParticipant]

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 i go to and feel i have to try and be the communication between all the different doctors/consultants. Does anyone know if MRI can show any myeloma symptoms ? I have one lytic lesion on skull which doctors arent worried about as my ParaProtein is only 5/6…my free light chains are ‘a bit high’ and have very high platelets which resulted in blood clots in my brachial artery in arm a couple of months ago.

Good Luck All
Angelina

[angieevangelouParticipant]

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 Pancreatitis which was discovered on my last hospital stay for blood clots but wasnt mentioned to me… i just read it on my discharge notes !. Im constantly tired and/or unwell due to MS…i NEVER REALLY FEEL ‘wELL’ and it worries me that my symptoms may well get put down to other diseases i have and not Myeloma… The consultant mentioned my Free Light Chain Blood Result yesterday and that it wasnt right but i was feeling really unwell with a cold yesterday and didnt question what he meant as i was struggling to stay awake !
I did say ‘Do i classify as MGUS still’ as i was leaving and he said yes so i suppose thats good…I had more bloods and he will see me again in four weeks so not the usual 3 month wait at least. I keep records of everything i have done/tested as i often have to refer to my own notes to help doctors who havent got any and seem to not be able to find things on computer !
Thanks for chatting to me, It means a lot…Will keep in touch.
Angelina x

[angieevangelouParticipant]

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 explanation of the lytic lesion in my skull but its hard as ive seen so many different registrars at each appt so nobody really knows my case ! Im hopeful that the consultant ive just seen will be helpful as he has a special interest in blood clotting disorders and also is friendly with my MS professor so they will now copy each other in to any new test results they have.At present i cant have any treatment for my worsening MS because of my various blood abnormalities.
Thanks for Replying and i hope you are doing as well as can be at the moment.
Kind regards
Angelina

Angelina

[angieevangelouParticipant]

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 … 🙂

[angieevangelouParticipant]

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 know whats causing my symptoms and almost impossible for me to keep track of worsening symptoms as regarding MGUS/MYELOMA as the MS causes me to feel tired/unwell and with various neuropathic pains/symptoms all the time.
Good Luck with your heamatology appointment.
Angelina.

[angieevangelouParticipant]

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

[angieevangelouParticipant]

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 partner diagnosed ? Hope he's doing ok at the moment…it must be very difficult for you both and i send you lots of good wishes…
Love
Angelinas x

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