Please take a look, I'd really appreciate any ... - CLL Support

CLL Support

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Please take a look, I'd really appreciate any help!! 💜

Hello everyone, I've been struggling with so much for years. I'll try to sum it up. It started with me loosing weight, about 75lbs within 6 months, unintentional of course. I've had a constant low level with my Rbc and vitamin D and hematocrit and absolute lymphs.

Most current results from yesterday-

Low levels-> RBC-3.41, RDW-11.5, ABSOLUTE NEUTROPHILS-1.1

High levels-> MCV-102, MCH-33.7, ABSOLUTE LYMPHS-3.7

Borderline Low-> HEMATOCRIT-34.9, PLATELETS-173

Borderline High-> CARBON DIOXIDE-29

I mentioned the borderline levels because usually my HEMATOCRIT is LOW and CARBON DIOXIDE has been HIGH the last few testings.

***My VITAMIN D has been drastically low, once 11, last time 4. Currently it's normal because I'm on 50k dosage twice a week! But it keeps getting low..

I've been checked for all gastro diseases, I just had an upper endoscopy and colonoscopy. Nothing to explain the problems I've had. Thyroid levels are normal. I've been checked for almost everything except leukemia,lupus and sickle cell. I don't have crohn's.

I have EXTREME FATIGUE, bad muscle and joint/bone pain daily, dry skin, neurological problems, neurotic enuresis, extreme weight loss, chills, night sweats and confusion/memory problems and suddenly low blood pressure for the lst 6 months(avg. 90/50)

Ive had swollen lymphs in my neck, underarms,waist line and lower hips in buttocks area they are firm and have been here for years now. Had my neck lymphs checked with scan and they said it looked normal and could be salivary glands??

I had ebv years ago that was never treated, could it have caused this? I've been checked twice and I don't have it anymore just antibodies, but I did before at some point...

I feel like I have leukemia or lymphoma please help... Thank you!!!!

I was originally 206 I went to 132 average. I have no appetite and don't eat much but this has gotten bad with weight loss. I eat ok, normal diet but I don't eat a lot. Even when I try I loose weight. I'm 28 years old. Started at age 25...

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Lovemyfamily05

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15 Replies

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Shedman4 years ago

You talk of a great many things, including weight loss, but make no reference to your diet..

What type of diet do you follow?

Is it a balanced diet? Do you eat recommended calorie levels? - are you of average weight and height?

After all the weight loss, are you a normal weight or to what extent are you under weight?

Do you have bowel problems, eg IBS ?

Also, you don’t mention your age.. age is always medically relevant to know.

Lovemyfamily05• in reply toShedman4 years ago

was originally 206 I went to 132 average. I have no appetite and don't eat much but this has gotten bad with weight loss. I eat ok, normal diet but I don't eat a lot. Even when I try I loose weight. I'm 28 years old. Started at age 25...

Lovemyfamily05• in reply toShedman4 years ago

I do have IBS, just got tested for h pylori, awaiting results. Idk if that explains swollen lymphs and bone pain though?

Shedman• in reply toLovemyfamily054 years ago

You have a large set of issues.You will need to work closely with a doctor —- you will need to help them with answers to all the questions they ask.

If your bowels are not working correctly, then your nutrition will fail.. you will suffer with vitamin deficiencies.. Be aware that vitamin B deficiencies are linked to mental health issues — it is cheap to supplement with a vitamin B complex (full range of b vitamins)

You don’t declare your height nor your sex .. these are medically basic things.. which is why I asked.

BMI (body mass index) is one way to look at your weight versus your height to establish whether you are approximately a healthy weight.

206 pounds sounds like obesity..

132 pounds could be a healthy weight.. much depends upon your height.

This is not likely the relevant forum for your needs.

Gut issues and neurological issues appear more relevant/important.

This is not an expert opinion.

See your doctor and get medical help —- if you are unable to trust them, find a doctor you can trust. Work with them to address what they see as the highest priorities for you to get well.

cllady01Former Volunteer4 years ago

Lovemyfamily05, I am so sorry you are continuing to have health problems. We cannot diagnosis any disease.

We each have some experience with Chronic Lymphocytic Leukemia which is a blood cancer, and we each found out what our diagnosis was by getting seen and tested by a hematologist.

I can say only that your blood work that you show does not point to your having CLL. There may be some infection (bacterial, viral, fungal). That would need to be explored by a Dr.

I hope you are able to find what is ailing you and get some relief from your worrying searching. Changing Drs. can help in some instances.

Lovemyfamily05• in reply tocllady014 years ago

Thank you for being kind.

JigFettlerVolunteer4 years ago

Hi! May ask your age?

Jig

Lovemyfamily05• in reply toJigFettler4 years ago

Hi, I'm 28. 132lbs. Started at 206 lbs.

LeoPa4 years ago

Do your doctors suspect leukemia? If so, did they run the appropriate tests? They would give you the answer.

Smakwater4 years ago

Lovemyfamily05,

In a conversation with a credible CLL specialist who stated a medical understudy focus on EBV, Epstein Barr is no longer considered a driver in CLL, but rather a passenger. It is also my understanding from what I have read that 90% of the population may have EBV, and once contracted, it always remains in you whether active or not. EBV can also reoccur.

As with any co-expression, EBV does complicate CLL diagnostic observation.

Another ugly co-expressive feinde not to have with CLL is Lyme, which is even more complex.

Ladylin1514 years ago

I agree with the above. My husband's "co-passenger" to cll was a fungal infection in his lungs. It could have been there for years with no symptoms and his cll also could have done the same. Neither shows up on a blood test but together they made him a very sick man. I hope they get this figured out for you.

Lovemyfamily054 years ago

cllady01Former Volunteer• in reply toLovemyfamily054 years ago

I reiterate: see a hematologist if you have credible worries about having a blood cancer. Please, we all understand you are upset about what is going on in your health and losing weight that you don't mean to lose is something that a Dr. needs to help you with. A low appetite in which you are not getting nourishment can be supplemented with Ensure or Boost to give you some more nutrients.

CLL is rare in people your age, but has happened to a rare few others of your age. I am hoping you will get a Hematologist consult to clarify your situation. If that consult with all the tests culminates in your having Chronic Lymphocytic Leukemia, we are a group that can support you and help you as you learn about CLL---if that is where your diagnosis points.

Best wishes.

Yakima534 years ago

Time to see a Dr. Rather than have this Gro6 try & Second Guess your Diagnoses...

Jm954Administrator4 years ago

Hi there,This group cannot diagnose any condition and you must go and have a consultation with a doctor who has all your medical history and can help you.

I'm now going to turn off replies as I do not think we can be helpful.

Best wishes

Jackie