Undiagnosed Symptoms Community
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1553907 tn?1367613186

My doctor won't listen to me...please help!!!

OK, I got ill the day after Mother's day last year, and that ended me in the hospital for 4 days (diarrhea but it was only blood, not feces). Bloodwork, xray, CT scan, gastroscopy, endoscopy, ultrasound, and no answers. Platelets are steadily getting higher (testing every 3 months) currently at over 700,000. WBC is above normal, suggested I take Aspirin. I also have Petechiae all over my body, with newer ones showing up all the time, and I wake up with bruises.

Since then, I've been losing weight (20lbs since mid-Nov), I'm very tired, and weak, and now have edema in my legs, hands and feet.

I've had diarrhea for a week now, and am on a waiting list (August is the soonest they can get me in) to see a hematologist for a Bone Marrow Biopsy. That's too long to wait, in my opinion.

I am having to take 40mg Lasix daily for the water retention, and it doesn't help, my urine output is very poor.

I am frustrated, and worried, because my symptoms are that of Hodgkin's almost to a "t". Do you have any suggestions?
I'm 37, have had 3 kids, a complete hysterectomy 12yrs ago, and have Fibromyalgia.
25 Responses
Avatar universal
Is there another care provider u can schedule an appt with? Expecting u to wait til aug with ur symptoms is unrealistic!!!! I wish u the best
1553907 tn?1367613186
I've attempted to, but all the doctors in my town work together and "don't want to step on each other's toes" as they put it. I've thought of trying in Edmonton, but that's 2 hours away, and I'd have to start all over again with finding a doctor, and then the history and test repeating, which is going to take time, which I'm not certain I have.
I'm gradually getting worse everyday, and I feel achy, weak, tired and swollen.
1553927 tn?1294311728
I would advise you to change your doctor.
Avatar universal
If you have insurance, give them a call and have them provide a hematologist that is innetwork and accepting patients.  They may be able to get you in sooner than the one you're waiting on. (I know people think insurances are of the devil, but sometimes they CAN benefit you if you talk to them!)

Other than that, I don't know what to tell you. A bone marrow biopsy is the next logical step.  It's simply a matter of getting in for the procedure.  Have you tried getting in contact with other doctors in the area? Not for a second opinion, but for additional testing and treatment. If you do that, PLEASE make sure all your doctors are aware of each other and working together.

August is a really long time IMHO.  There's got to be another doctor in the area that can take you or do the biopsy on behalf of your other doctors.  In the meantime, if any of your symptoms change or get worse, to the ER you should go.  You have altered fluid levels in your body now because you're retaining in some ways and you've got diarrhea.

Good luck hun. I sincerely hope this passes. :( Keep us posted.
1553907 tn?1367613186
Thank you everyone.
I've attempted to see 3 other doctors, as well as talking to the Emergency Room doctors, when I end up there. The issue is that the town I live in, only has one hospital and all of the doctors from the only clinic in town, all work there and work together.
I've completely lost faith in the medical community here.
We're moving within a few months, and the town we're moving to, is where I think my next logical step is, however it's 1.5 hrs away to their doctors, and again starting from scratch.
The unknown and the fact that I've been progressively getting worse, since May, is really wearing on me.
My husband and kids are worried, and if we only had a name, it would help. But to make me wait until August for the initial Hematologist appointment, how long after that will the bone marrow be?!
351246 tn?1379685732
Welcome to the MedHelp forum!
Petechiae can result from autoimmune disorders, such as lupus or rheumatoid arthritis, bone marrow disorders such as leukemia, inflammation of the veins, as a side effect of certain medications like birth control pills. Deficiency of Vitamin B12, folic acid, or Vit K could also be the cause. Platelet count is often increased in inflammatory conditions like rheumatoid arthritis. It is also increased in some bone marrow disorders like myeloproliferative disorders (polycythemia vera, essential thrombocytosis, idiopathic myelofibrosis and chronic myeloid leukemia). So yes, bone marrow testing is a must. Also since you have diarrhea, rash etc, Crohn’s disease should be ruled out. Take care!

1553907 tn?1367613186
Thank you so much for that information. My doctor, actually 3 of the doctor's I've seen haven't said anything to me, as a suspicion. In fact, one emergency room doctor said that it was depression, to which I asked how the hell can being depressed can affect your blood.
I've been waiting since May for someone to help me out, and the worst is that I don't even have an appointment with the Hematologist yet, they just told me last month that the wait is until August. This is only the initial visit, not the actual Bone Marrow Aspiration.
Everyday I feel worse than the last, and I really appreciate you giving me some ideas to ask a new doctor.
Thank you.
1553907 tn?1367613186
bloodwork results today:
WBC 14.6
platelets 512,000
1553907 tn?1367613186
apparently they were at 485,000 last time not 700,00 as I was told previously
Avatar universal
Sherri - don't do that - it'll give you diarrhea.  

S4567 you sound like an advertisement!
1553907 tn?1367613186
don't do what? I won't be taking aloe vera, if that's what you're referring to, it just seems pointless to me, and possibly poisonous. I am very chemically sensitive, because of the Fibromyalgia, so introducing a plant to my system probably isn't a wise decision
Avatar universal
Oh wow, it got removed.

I flagged a post as inappropriate.  It was the aloe vera post.  Aloe is actually safe in small doses. :)  But it'll give you wicked diarrhea.  Great when you're constipated, not so great when you've got an undiagnosed health issue tormenting you!!
Avatar universal
In my opinion, this does NOT fit Hodgkin's to a tee.  It sounds in my opinion autoimmune; can't say for sure this is not any cancer.   Vasculitis?  Lymphoma?   Not sure.

Anyways, there is no other Hematologist in your town to get a referral to?  

When are you getting the bone marrow aspirate?  
1553907 tn?1367613186
I have been referred tHematologist, but it's 1.5 hrs drive to Edmonton, and I'm on the waiting list (since August) just for the 1st appointment and it's a year wait. I don't think I can wait until August since this started in May, I've been getting worse everyday.
I am seeing a new doctor on the 1st, and will have to start from scratch, but maybe he'll be willing to fast track me. I'm worried that it is cancer, Leukemia seems to fit, and if that's the case, then it's wait, wait wait some more. Wait to see the doc, wait for bone marrow biopsy, wait for transplant...just wanting a name to put to this illness, so I can try to deal. The unknown is just as painful as the pain I feel.
Avatar universal
Keep us posted on your outcome.  
1553907 tn?1367613186
i will, thanks
Avatar universal
One thing you might consider is that you have a parasitic infection or systemic yeast overgrowth. These can be very hard to diagnose and can cause a wide variety of symptoms that include everything you have experienced. With fibromyalagia your immune system is somewhat compromised, which places you at higher risk for these type of infections.
Keep an open mind. Maybe find a doctor who practices alternative therapies. These MD's are generally very good and are leary of giving out toxic medications without clear indications.
As for aloe vera, it is very safe if you use it right. I'm not suggesting you try it tho. Anyone using a herb or medication should have as much knowledge as possible on the effects and side effects of what they are taking.
  The latex part of the aloe vera plant (the linning underneath the leaf surface) is a very strong laxitive. The remainder of the plant is very mild and has been used by herbologist for centuries for all sorts of conditions. The salicylate content in aloe vera, however, can block the positive effects of guaifenesin if you are using that medication for your fibromyalgia. Otherwise, aloe vera juice (with the latex removed) is as about as toxic as apple juice. Keep an open mind. There is always more to the story... Good luck
1553907 tn?1367613186
I'm allergic to latex.

I do have H.Pylori infection, but was told that wouldn't affect my platelets being this high.

Thanks for the info on the aloe vera, I never knew.
Avatar universal
Have your clotting factors been checked?  

I will agree with the last poster that a systemic infection can cause these symptoms too, but I don't think that is what it is.

1553907 tn?1367613186
not sure, how do they check that, I'm on baby aspirin everyday because of the high platelets
Avatar universal
It is a lab draw; an anticoagulant panel.  It might give further information in regards to your elevated plts count.  
Avatar universal
I am new to this community, but I do know that you do not have to start from scratch.  It is your RIGHT to have a copy of any and all of your medical history including all tests. You may have to request this in person and sometimes you may have to pay a fee for the copying, but I highly suggest you do this and keep and copy for yourself and your new doctor.  This way you will have them in hand before you go, and or drop them or mail them to the new dr. before your visit, so he can become familar with your case before you arrive!
Good luck and best wishes! Remember it is in your hands and you have to be your own advocate. NEVER take NO for an answer because this is your life and you only get one!
1553907 tn?1367613186
I agree
Avatar universal
Parasitic infection and/or yeast overgrowth could cause a rise in your platelet count. I double checked in the Merck Manual.  Infections like these are very hard to diagnose. Since there are no routine test, doctors tend to over look such conditions. They are very had to treat with conventional drugs. Fungal infections can spread throughout the body's systems (bone, renal, skin, bowels etc.,). A chronic low grade infection can trigger hyperactivity of the immune system resulting in the body attacking itself. The result is an autoimmune condition that really throws off the diagnosis.
It sounds like the platelets are either immature or the other clotting factors are not being form appropriately. Since you are taking aspirin you have got to have your clotting factors checked (like someone already suggested). You are bleeding and the bruises prove it. Be careful with aspirin, it may not be helping. Because of the bleeding and diarrhea your iron is probably way low too.
Someone also suggested vitamin K (and other nutritents) be checked. A normal healthy bacterial flora will produce some vitamin K and the rest is from diet. But the nutritents have got to be absorbed. Your diarrhea pretty well assures that they are not. If you are developing IBS or Chrone's disease or the like, you have another factor that slows or stops absorbion of vit K and other nutritents.  
You could try a natural treatment that has no contraindications and helps in stablizing the immune system, slowing or stopping diarrhea and increase nutritent absorbion. Probiotics... Acidophilus. A good natural yogart several times a day or you can get more potent ones that are enteric coated capsules. If you want support or advise on probiotics or the GI tract in general from a nutritional consultant (free of charge) contact Renew Life or Garden of life. These people are experts but can only suggest what you might try as far as natural products.  Anyway, Probiotics are essential for life and they are not a cure but you might feel better.  Cheap, easy and safe enough for infants to use.
I have this feeling that you are going to be ok and that everything will work out for you and your family. I know you are scared. I would be too. But somehow, someway the cause will be found and the treatment given will be 100% successful.
Really hope you start to recover SOON and that you get your life back. Bless you and take care!
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