[Melanie_89]

Hoping for good news, preparing for...?

by Melanie_89 on Fri May 10, 2013 7:04 am

Hi everyone,

I’ve been reading all your inspiring posts this evening and have decided to join up for support (for what I am hoping will only be a temporary period of time) whilst waiting for my appointment with the haematologist, after some blood tests came back abnormal.

I’m really not quite sure how concerned to be at the moment, but am trying (a little unsuccessfully) to put it at the back of my mind until the appointment. I’m 23 years old and I went to my family doctor two weeks ago for worsening back pain. I have had lumbar and sacral pain on lying flat for a year or so now, but after having to stand for long periods in the operating theatre (I am a medical student) it had become acutely worse and present almost 24/7. I ignored it initially, like most of my medical complaints (I prefer to think I’m superwoman), but it was adversely affecting my day-to-day functioning so I went to the doctor who ordered a CT and took the opportunity to do my yearly bloods. He said that because of the back pain he would add on some tests for multiple myeloma as a precaution but that I ‘wasn’t to worry’ because it was extremely unlikely.

The CT showed some minor disc bulging at L4/L5 and L5/S1 but nothing that would really account for the pain (there was no mention of osteolytic lesions). I’m not sure what my renal function was like or what my calcium levels were, but some of the lymphocyte surface markers he tested came back high (as did the overall lymphocyte count). He didn’t test for specific protein markers or anything else, so I'm not sure how relevant the surface markers are. On seeing the results the GP immediately faxed a referral to the haematology department at a local hospital, and I’m in limbo-land waiting for an appointment (the public health system is overwhelmed with patients; I’ve been told it’s a probable wait of up to a month).

I have had some other symptoms over the last 6 months to a year, but I am unsure as to their relevance. I’ve had problems with arm and hand strength over the past year; I’ve self-diagnosed myself with TOS (Thoracic Outlet Syndrome), as I have weakness and numbness in my hands (ulnar distribution), get sharp pains in my wrists and struggle to dry and brush my hair as I can’t hold my arms up for more than a minute or so. I’ve also been getting these episodes about once a day where I become overwhelmingly warm (read: boiling hot beyond belief) and I have to change to shorts and a t-shirt, hold a packet of frozen peas on my neck etc. in order to cool down (and then I get so cold I'm shivering). Apart from that I’m generally very fit and healthy.

I’m hoping this is nothing and that I’m over-reacting, but I also want to start preparing myself mentally in case something is really wrong. I’m finding it a little difficult emotionally, as I live on the opposite side of the country to my family/friends and, although my close friends here know and have been supportive, it’s not the same. Also, my parents are currently overseas for 3 months and I can’t contact them easily (don’t want to freak them out unnecessarily at the moment either).

Anyway, sorry that was so long. This forum has been useful and comforting to me already; thank you for that.

Melanie

[Nancy Shamanna]

Re: Hoping for good news, preparing for...?

by Nancy Shamanna on Fri May 10, 2013 8:38 am

Hi Melanie, Thanks for introducing yourself to this Forum. I hope that you don't have multiple myeloma and it is just 'medical student syndrome', but I thought of a couple of things that might help. When you had your bloodwork done, was there a test for protein included? Even if you need to wait to see a specialist, you might be able to get your blood work done sooner thru your general practise doc. He/SHe could probably get an SPEP (protein electrophoresis) or even an SFL (serum free light chain test). You might like to request a copy of the blood tests already done in order to review them yourself...the creatinine levels and HGB levels would be of special interest. The criteria for diagnosing myeloma include renal impairment, anemia, bone damage.

Hope it all goes well for you. Many doctors outside the areas of haematology or rheumatology don't have much awareness of myeloma, so it's always good to learn about it as a medical student. My daughter was a med student at the time of my dx, and she helped me to get an earlier dx than might otherwise have occurred, since my usual family doc had not encountered it previously. It is a rare disease after all.