[evaoschlakParticipant]

Hello!

This is my first post. I am 36 years old and I have been ill for over a year. My symptoms started  with a chest infection, x-rays showed a hairline fracture in a rib, doc said it broke due to coughing. My symptoms include severe fatigue, pain in groins, legs, knees and headaches. Night sweats, weakness, bad balance, muscle spasms, confusion, unintentional weight loss. My breathing is much faster than it should be (around 25/min resting). My feet are absolutely freezing even though I sweat and feel too hot in my upper body. My pulse is very high as soon as I just stand up and I get dizzy. I drink more than usual and pee much more often. I am so unwell now that I am basically housebound, I am dark under the eyes and I look unwell. The doctors have been working on the premise that I have CFS/ME (chronic fatigue syndrome) but I question this diagnosis.

My dad had blood cancer and I have just received lab results that I would like your opinion on. The doctor has only told me that I have an elevated paraprotein in my blood and that he will refer me to a hematologist.

 

Pathology report serum SPE:

“Serum total protein” 82 g/L                 (60-80) High

“IgG “13.38 g/L                                         (6.0 – 16.0)

“IgA” 1,38 g/L                                            (0.80 – 2.80)

“IgM” 1.59 g/L                                           (0.50 – 2.00)

 

Paraprotein profile  Monoclonal detected

“Band size 1” 8 g/L

“Band type 1”

IgGK

 

As far as I know I don’t have anemia, although I was treated for a very low folic acid in the beginning of my disease. I have been googling but find it very hard to understand the labs. Do the labs mean that I have a free light chain kappa elevation? Could it be myeloma even though the value of 8 g/L is low as far as I can understand it?

Would be so very thankful for advice.

Hugs, Eva

 

 

[mhnevillParticipant]

Hi Eva

Sorry to have to welcome you to this site, if you know what I mean!

I’m not great on the intricate blood results, but must say, I can understand you suspecting Myeloma when I read your other symptoms and because your Dad had blood cancer. Was that Myeloma? It would be very helpful to you to have a word with one of the Specialist Nurses, on the Help Line, tomorrow. They are bang up to date with all info and are very friendly.

I do hope they give you a proper diagnosis soon if only so you know what you are dealing with.

One good thing is that the outlook for the treatment of Myeloma is progressing in leaps and bounds.

By the way, there is an under 50s Strand to this Site. Not that I’ve been on it. Too old!

Keep in touch you will find lots of support on here.

Best wishes.

Mavis

[evaoschlakParticipant]

Thank you for your reply Mavis 🙂

My dad had Waldenstroms macroglobulemia which he died from a few years ago. I am too shy to call the helpline, but thank you for the suggestion. I am just worried that it is cancer I am dealing with, because if it is, I would like to get treatment ASAP. I have been waiting to see a hematologist for over a month now. As the doctors have been suspecting CFS/ME, and I keep deteriorating,  I feel I need to be proactive.

 

Thanks again Mavis!

Eva

[Anonymous]

Hi Eva,

if you are too shy to call the nurses…email them..that’s what I did and got some really helpful advice very quickly that helped elviate some of my awful thoughts and point me in the right direction.

Helen x

[rosie1961Participant]

Hi Eva, I’m afraid I can’t answer your question about the bloods. But I understand your frustrations. It sounds like you have been waiting for answers a long time whilst feeling so ill.

My dad has myeloma and I have been getting random symptoms for a few months. Apart from feeling tired I don’t have any major symptoms but it’s still hard to deal with all the questions.

I really hope you get answers quickly . Thinking of you.

 

 

[evaoschlakParticipant]

Thank you Helen, that’s a great idea, I will e-mail them!

Rosie – my heart goes out to you, I know what it is like to have a sick dad. I hope he is getting the very best of care and treatment and that you get the answers to your questions soon too xxx

[rosie1961Participant]

Is it worth asking your GP to run the Bence Jones urine test while you wait to see the haemotologist?

[Anonymous]

Good thinking Rosie for the urine test worth asking about.

my GP did urine test and chest X-ray before refered to the Haematologist..my protein was 80 g/l and I was IgG kappa with a paraprotein of 9g/l so he did this before sending me.

eva think it’s an idea to ask tomorrow at the surgery

 

 

[evaoschlakParticipant]

It is a good idea girls, I will try to call them tomorrow (they must be so sick of me). We are like lab-value sisters Helen 😉

[rosie1961Participant]

Hi Eva, have you had your thyroid and B12 checked as both of these affected me quite badly (especially when I was hyperthyroid)

[evaoschlakParticipant]

Yes Rosie, to my disappointment they were normal xxx

[MrsLParticipant]

Hi Rosie,

Sorry that it sounds like you have symptoms of Myeloma. I have IgM Myeloma, at diagnosis my total IgM was 100 with a paraprotein level of 52. Any level of paraprotein is abnormal but obviously I am not an expert jut learning from my own experiences. The Myeloma infolding is excellent, there is no reason to be shy in talking to them, but if you really feel you can’t then there are some excellent info guides on the site which you can read or down load. Printed copies are likely to be available at your haematologist clinic.

Linda

[MrsLParticipant]

Sorry that should say the Myeloma infoline is excellent.

[christaylorParticipant]

Hi  Eva

i fully understand the worry and frustration you must be going through, and I am sorry I cannot allay those for you. I can give just a personal account of the very little I know regarding blood test and diagnosis of Myeloma.

After hospitalization,

I had no Paraprotien level indicated, but my Serum free kappa light chain reading was just over 1200, and after 2 weeks of further tests which were Bone marrow biopsy, then Bone biopsy, and the Bence Jones urine. CT scan, MRI scan, etc etc. The Hymotologist Consultant finaly came to give me the result of Non Secretory Multiple Myeloma hence why it had not been picked up on a standard blood test. It was very frustrating for all my family waiting for the result but I think because of its odd nature they had to be certain hence carrying out all the tests.

Since my diagnosis with treatment the kappa light chain has reduced the lowest was 30,  on Monday I am due for Stem cell harvesting for which hopefully will have a stem cell transplant early March.  So even after a very slow diagnosis  you can still get it down with the treatment available.

I wish you well, and hope you get your results soon with the correct explanation.

CT

 

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

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