36 years old. MDS or other?

[uno99]

Hello, recently became concerned with my health.

In august I became ill with Chills and weakness. Doctor told me it was a virus and I'd feel better in a few days. I did, but about a week later I had strange muscle soreness that started in my neck and went to my entire body. It lasted a week. Doc tested me for all kinds of stuff including HIV and Lyme etc.

REsults came back all negative except for "slightly low WBC and high ANA (anti nuclear antibodies). I was sent to rhumetologist 6 weeks later who did another CBC, but could not diagnose me with a autoimmune disorder (those tests were negative.) I noticed some enlarged lymph nodes at this time in my groin as well. they were ultrasounded one was 1.1cm others were 1.0

CBC from Sep22:
WBC: 3.2 xE9/L
RBC 4.78 xE12/L
Hemoglobin 149 g/L
Hemacrit .430 L/L
MCV 90 fL
MCH 31.2 pg
MCHC 347
Platets 201 xE9/L
RDW 13.5

Neutrophils 2.0
Lymphocytes 0.9
Mono 0.3
eosinphilis 0.0
basophils 0.0

Vitamin B12: 247 pmol/L
Vit D: 125 nmol/L

A couple other things were out of whack too: Serum protien Alpha 2 Globulin measured a little low at 4.7 (range 5-9) and compliment C3 low at .77 (range .9 0 1.8)


I realized at this time that I'd lost about 7-8 lbs for no reason. Im getting very thin and feel tired and dizzy.
I became concerned. But I wasn't quite sure what for. It was a little while later I had a complete mental breakdown and panic for 3 days and went to the ER to find out what was wrong. They did another CBC and I was told that my blood looks great and not to worry about blood cancer. The ER doc told me my WBC was 6.6 and lymphocytes were 1.0. I was relieved but I still had no answers to the way I was feeling.

4 days later I did another CBC that the Rhumatologist had ordered previously and my WBC had dropped to 6.1 which is fine but my lymphocytes dropped to 0.7. I got very worried about this again and I am still feeling crappy and continuing to lose a little weight despite eating a lot more food than I'm used to. Rhume also informed me after checking my medical history that my WBC has been measured low a few times in the last few years (since 2013 I think)

Saw my family doctor again OCT 16 and was told not to worry but she ordered another CBC:

WBC: 3.9
RBC: 4.88
HB: 154
HCT: .442
MCV: 91
MCH 31.6
MCHC: 349
RDW 13.1
PLT: 198
MPV: 7.2 (can anyone tell me what this is? range is 7.0-12)

Neuts: 2.7
Lymph: .8
Mono: .5
EOSN: 0.0
BASO: 0.0


Doctor is still telling me to not worry. test again in a month. She says my blood is "no where near" bad enough for a hema referral and a BMB. Meanwhile I've started tracking my calories and I'm up to 2800-3200 a day and not gaining an ounce. I feel ****** and tired and my lymph nodes are still enlarged.

All of my symptoms are getting explained away as anxiety and its frustrating!

Would love some advice thanks! I'm seeing my doctor again this afternoon and not looking forward to fighting with her.

[uno99]

Some of my symptoms in addition to the weight loss has been:

-Occasional bone and joint pain in wrists, ankles and hips. Comes and goes and is fairly mild but bothersome
-Usually feel very warm after eating but no measurable fever.
-occasional heavy nightsweats and sleep seems to be disturbed. I fall asleep ok but wakeup very early and can't get back to sleep
-My appetite seems fairly uneffected but bowel movements have been quite different and flatulance has become very very stinky
-very frequent muscle twitching in calfs especially left leg. Also have a buzzing sensation in left thigh especially when laying down or standing straight.
-started noticing possible petechiae around the body, especially legs. Is this possible with normal range platets?

Sorry to add to my already lengthy post but I'm desperate for answers.

[Marlene]

At first glance of your situation, it sounds like the virus took its toll on you. It can take months to fully recover.

Your vitamin B12 levels appear to be low. In the USA, we use a different measurement but when I converted yours, it looks like it's in the low normal range. B12 serum is least effective measure of B12. And anxiety, sleep disorders and the buzzing sensation can be related to that. Many experience B12 deficiency symptoms in the low-normal range. Did they check your folate?

And I'm not sure from your post what vitamin D test was done. If it was the 1,25(OH)2D, then it may be a bit high.

Have they checked your hormone levels? Testosterone, Thyroid, etc.

[triumphe64]

Go to a good hematologist and have him check out.

There is a rare illness that is hard to diagnose. Normal doctors may not think of it. Don't worry, there is good treatment.

[uno99]

Thanks Marlene for the confidant response. My Doctors have been telling me all along "virus" and I am quick to adopt their optimism but then I start feeling unwell again and get more and more concerned.

After I first got concerned about the situation (after my panic episode) I went to a naturopath and he looked at my bloodwork and suggested I start taking B12 sublingual. I've taken 1,000-2000 mcg per day. I would think my slightly low level would be improved by now but my issues remain.

My vit D level called "25-hydroxyvitamin d" was measured at 125nmol/L (ref 75-250. Both the rhume and naturopath were surprised to see someone with such high levels. I've been supplementing with 4-5000 for a couple years and it was also right as summer was ending. Is it really too high??

Folate hasn't been tested. My doctor is very by the book and I dont think would ever order a specific blood test unless it was her idea.

Hormone levels have not been tested either but TSH came back normal 1.23 mIU/L (ref 0.6- 4.00).

My big concern remain to be my weight. I'm now 147lbs 5'9 male who used to be very overweight in my 20's. It's scary how thin I'm getting

[Marlene]

The results for that specific vitamin D test is good. So no worries on that front.

The key nutrients to check for blood disorders are Iron, Copper, zinc, Vit d, B12, folate and B6.

Since you're taking Vitamin D, are you also taking K2? K2 helps the calcium get to where it needs to be.

Magnesium can help the muscle cramps and sleep. A warm bath with epsom salts before bed can be helpful.

Sometimes it's helpful to look back at what was going on that can impact your health before you got ill. Any medications? Major stressors? Other illnesses? etc. You might get some insight from this exercise.

When you visit your doctor, lots of times it's helpful to go in with just your top three issues/concerns. I usually tell them I have X number of concerns I want to discuss that way you help set the expectation for the discussion. If you have a laundry list of items, then it seems nothing really gets addressed.

[uno99]

Thanks for your advice Marlene, I was reading your post while waiting for my dr appointment.

Once again my doctor refused to investigate any of my concerns further. Basically, I'm told I need to treat my anxiety first, which means taking a pill. Even though I'm doing 2 different types of therapy! Honestly, my anxiety and depression really arent THAT bad...

She refused to even order another CBC let alone any of the other tests that have been suggested by you or my naturopath.

Is it time I find a new doctor? I Live near Toronto btw. Maybe I'll go to a walk in clinic for second opinion...

[Marlene]

Another opinion is probably wise. Sometimes, or many times, anxiety and stress get used when they don't have an answer or there's not a real clear indication of something physical going on. I'm surprised your Naturopath can't run some tests or refer you to a doctor more open to working with you.

Doctors who practice Integrative, Functional or Orthomolecular medicine are usually more inclined to dig deeper to get the root cause. You may want to do some research on trying to find the right doctor vs a walk in clinic.

I'll send you a pm later or tomorrow with link on B12 video you may find interesting. Got to find it first.

[Hopeful]

Hi uno99,

Based on your symptoms, I would suggest consulting with a GI doctor next. You may have some malabsorption issues going on that are contributing to your weight loss.

Also, if my Vitamin D were normal, I would not be supplementing. Too much Vitamin D can be toxic.

[uno99]

Hello Hopefull,

Thanks for the advice. I think I did have some malabsorption going on up until I fixed it a week or so ago with some probiotics.

I'm perhaps starting to gain a little weight finally but my dizziness is getting worse.

[uno99]

Pretty convinced my doctors are not telling me anything because they don't know what to do... just waiting to see what happens to me. Pretty scary