To be or not to be: I have been going to... - CLL Support

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To be or not to be

madamp profile image
8 Replies

I have been going to specialist after specialist for months. I haven't gotten any answers. However most recently my labs came back slightly abnormal. My IgG was 571 mg/dL(LOW) ref rang - 700 mg/dL-1600 mg/dL, my IgM was 78mg/dL which is low but still in the ref range, my IgA is 93 mg/dL which is also low but still in the ref range. My Bun was 19 which is in ref range but on the high end. My Red Blood Cell Count was 4.30 million/mcL which the ref range is 4.20 million/mcL -5.40 million/mcL so it is a little low. WBC 7.3 thou/mcL, platlet count was 203 thou/mcL. Creatine 0.6mg/dL so that is the lowest it could be and still be within the ref range. Potassium is low, Albumin is within range at 4.7 but that range ends at 5.0. My lymphocyte Absolute is 1.8 thou/mcL ref range of 0.8 thou/mcL-5.0 thou/mcL, monocyte 0.4 thou/mcL which is within range. My basophil and Eosinophil absoulutes were both 0.0 which is within range. Alk Phosphates are 59units which is also within range, just heading towards the lower end. CK is 33 IU/L which is also in range just at the lower end. CRP <0.5mg/dL. Sodium level is 139 mMol/L which is getting low but also within range.

I know that low isn't always bad. However i have also been having consistent tachycardia for about 4 months now. I have been having severe lower back pain also joint pain and random swelling. Times where my bones feel like they are breaking. Also limbs randomly falling asleep and tingeling, numbness. I take good care of myself. I work full time too.

Is my IgG something i should be conserned about? or is there anything else that i have mentioned here that may shed light into this mystery illness i have been dealing with?

Also note, I have not been sick recently.

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madamp
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8 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

Hi madamp

I can't comment I'm not a doctor, but what specialists have seen?  You have a confirmed diagnosis of  CLL?

~chris 

madamp profile image
madamp

No cll has not been confirmed i have been to a pain specialist rheumatologist and a sleep doctor

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to madamp

I suggest you see a haematologist and get a confirmed diagnosis, then that part is settled.  Flow cytometry blood test will differentiate CLL from other lymphomas and leukemias...

It may lead to other tests that will help sort out your problems, but I agree with Newdawn, Cardiologist and a Nephrologist

You will get it sorted... 

~chris

Newdawn profile image
NewdawnAdministrator

How low is your potassium madamp? I'm not suggesting it's related but it is known that low potassium can be related to tachycardia and muscle/joint pain. It usually is below  3.5 mEq/L when this occurs but these are matters which need to be discussed with your physicians. I think I'd be asking for a cardiologist and/or renal consult in your situation but obviously this is not medical advice.

I hope you don't receive a CLL diagnosis but also hope you do find the cause of your ill health because that's a worry in itself.

Best wishes,

Newdawn 

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Also not a doctor, but when I have had similar issues I have included a cardiologist and an orthopedist in my collection of ologists. I also had my vitamin D and the various Bs checked. You don't mention whether you have also seen a hematologist, or whether the random swelling seems to be joint related, lymph node related, or edema.

I know how frustrating it can be to know that your body is telling you something, but to not be able to pin down the cause. It took collecting every medical record I could, including doctors' notes, filing them, and then starting over with that information in hand to get to the bottom of my issues. I hope you find the right doctors to help you. Please keep us posted about how you are doing.

hanskloss profile image
hanskloss

I also have low IgG - this is your first line defense immunoglobulin. With such low levels you may be very susceptible to bacterial and viral infections.

When I was on the low side I got IgG transfusions - prescribed by hematologist.

madamp profile image
madamp

Thank you guys, my vitamin D is really low. I think it is a 25 or less. My Potassium is 3.7 mMol/L ref range 3.5 mMol/L-5.0 mMol/L. B12 430 Picogram/ml ref range 180-914.  I saw a hematologist in 2013 and she said that my blood work was normal even though i was bleeding and bruising easily. I have yet to see a cardiologist. My dad is seeing one now due to issues with Agent Orange. My swelling seems joint related but not sure. I wouldn't say ltmph node related or edema. I am also a narcoleptic.

Catherine67 profile image
Catherine67

I have no experience of tachycardia but I have suffered from low vit D (17) and that caused a lot of joint pain and very painful bones, especially ribs, shoulders, hips and thigh bones.  After 9 months of prescribed supplements my pain has now gone and my level is just in normal range.  So perhaps that could be part of the problem? 

All the best.

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