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Newbie still working on firm diagnosis

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#1 Itchy


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Posted 05 June 2013 - 09:04 AM

Hello to everyone here,

First let me say that I am glad to have found this site. I have so many questions that I am not sure where to begin, but I think that for right now I will keep the questions until firm diagnosis and just tell you a bit about me and my symptoms.

First off, I am not new to having rare things, I actually have something called TNP or Trigeminal neuropathic pain. It started around 2008 as Trigeminal neuralgia and took a while to get a diagnosis. It is a rare illness and the short version is that it is a nerve problem to the facial nerve, the Trigeminal nerve and affects only one side of the face. It is nicknamed the suicide disease because it is the most painful condition that a human can have. Mine was caused by a compression of the Trigeminal nerve and an artery at the brain stem. After nine surgeries, 5 of them brain surgeries, having been in an auto wreck that caused more problems with it, in a little over two years for all of this, I was left with permanent unintentional damage to this Trigeminal nerve at my brainstem. I now have a motor cortex stimulator implant to help me cope with the pain and take pain meds. I also have an occipital stimulator implant because my occipital nerve was shredded by a retractor during one of my brain surgeries.

As you probably have guessed, I don't have very good luck when it comes to my health. I do not think my TNP has anything to do with me possibly having CML. I also have had autoimmune problems for more than 11 years. I do think my autoimmune problems are directly related.

A number of years ago I started having kidney stones, then low grade fevers, severe muscle aches, joint pain, extreme fatigue... I spent time with an infectious disease Dr and then on to a rheumatologist. My blood work was messed up on and off, both my white count and RBC, but I never had any positive results pointing to a specific autoimmune disease. I was eventually officially diagnosed with sero negative rheumatoid arthritis, in order to be approved and put on Humira. I have never tested positive for the antigens one should have and don't have any RA joint damage. My rheumatologists for years have said that they don't really know what I have, except it must be something rare. For years I have taken Humira, methotrexate, which is a chemo drug and steroids on and off, both low dose, high doses and medrol taper paks. I have never felt normal since this started years ago and have had many flares and ups and downs. All of these drugs have seemed to help tamp down my problems.

I started with a new rheumatologist in the fall of 2012  and was taken off humira and then methotrexate and the steroids. She felt these drugs were possibly too dangerous and they don't know the long term effects of humira and she didn't feel I had RA, which I feel is true. Here is a list of symptoms that have happened in the last 10 months.

I have low grade fevers, extreme muscle pain and aches, joint pain, feel like I have the flu, very very extreme fatigue, my white cell count has been consistently low and my RBC is high (no I don't know the numbers), I have had kidney stones, had the smallest vessels in one of my eyes in the retina inflame and necrotized causing permanent vision problems with no reason why, have had pleurisy several times, pneumonia, in December I had severe dizziness and my tongue turned very thick and hard to talk...I had trouble writing in long hand and just couldn't get my brain to make my hands do what I wanted - they think I had some sort of TIA's or very small stroke - I can't have an MRI and the CT scan didn't show anything. I have been having PERIPHEAL neuropathy in my hands, arms, feet and legs - have it almost all the time now. I now have night sweats and have been having severe itching after a hot shower or bath. The itching has not started until after I get out of hot water, not while in it. In the past few weeks though I have been having itching spells or bouts without being in hot water. I don't know what starts it at the moment. In the last few days, my scalp has been getting severe itching episodes. I do not have dry skin, hives... I have lost weight in the last several years, feel nauseous on and off all the time. I never feel hungry and would never even think to eat on my own. I can't eat much when I do eat bc even though I am not hungry in the first place, I quickly feel over full. I have been having bouts of pain in my upper left side, over my breast and into my shoulder, these twinges, aches and sometimes sharp stabs, I really thought I maybe had preicarditis ( I didn't tell my primary of this problem and has been happening on and off the past month and has also occured in the past years at different times. I did finally tell my primary over the phone several days ago and she was most upset and told me that the next time this occurs, I really should be checked). I have been having pain in my lower right side, more a nagging ache and twinges that come and go. I really have just chalked some of these aches and twinges as maybe gastro or just normal pains people have and never thought to really mention to my Drs and frankly after all I have already been thru, I am sick of Drs, hospitals, tests and being poked and prodded...and other than my TNP, always being told it must be something autoimmune and I probably ha e something rare that nobody can figure out.

I am sure I have some other symptoms I should tell you about, but at the moment I can't think what I have left out. I will say that my fatigue has been so awful the last few weeks, I can sleep 20 plus hrs and just moving from one room to another, quite exhausts me

Currently I have been on 10 mg of prednisone for the last 2 months or so. I take Advil, wear a fentanyl patch and have other pain meds for break thru pain for my TNP. I would be considered a long term I tractable pain patient because of my TNP.

Last week, my rheumatologist said she wanted to send me to a hematologist to have my bone marrow analyzed because she thought that maybe that was really where my problem is and always had been. I agreed to go but didn't really listen very closely to her because frankly, I thought this would be another wild goose chase with a bunch of testing only to be told they can't figure out my problem. Then, a couple of days ago, my primary called me to talk to me. She had gotten my rheumatologists report and wanted to ask me some questions. She asked things like did I have night sweats and did I ever itch after a bath.... Of course my answers were yes and that my itching problem is quite severe at the moment. She then told me she had made me an appt with a hematologist for this coming Monday and she thinks I may have myleofibrosis. She also told me to really watch myself, to call her,come in to see her or go to the ER if I have anything happen, such as left sided pain over heart, more stroke like symptoms...

I still wasn't very worried at this point and wasn't even going to do any reading about it. I did finally do a bit of reading and I am very very surprised at how my symptoms may fit. What I am wondering is could I have had this for years and could the humira, methotrexate and steroids have been keeping things tamped down so to speak? Or could I have had one of the precursor illnesses and now things have just blossomed...? I do not know my latest CBC counts taken last week other than my white cell count is still low and my red cell count is high. I don't know if my spleen is enlarged or if my pain in my left side is my liver...

I have my first appt with my hematologist on Monday and I do know that I will I sits on having a bone marrow biopsy. Do hematologist usually just do this in their office and can she do it at my appt or will I have to schedule another appt for the biopsy?

Thanks for any help or advice or knowledge any of you may be able to impart.



#2 Trey


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Posted 05 June 2013 - 09:52 AM

Overall you do not have symptoms that would cause your doc to suspect leukemia, and especially not CML leukemia as we all have here.  Your symptoms, IF (big IF) they suggest any blood cancer disease are more like lymphoma, but you need to have test results from a hematologist.  

Note to L&LS monitor:

This post should be moved to "Waiting for a Diagnosis":


#3 Pin


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Posted 07 June 2013 - 06:53 AM

Hi Itchy, firstly, I just want to say I'm sorry to hear about your TNP/TN diagnosis, it's a difficult condition - hard to believe, but both my Dad and my cat have it (well it is called something different in the cat!). I do hope you get some answers about your symptoms very soon.

Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.


2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14

#4 pegetha


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Posted 07 June 2013 - 12:46 PM

Hi, "Itchy,"

I agree with your primary doctor, your symptoms sound very much like myelofibrosis, or perhaps one of the other myeloproliferative neoplasms.  Of course, you have other physical problems, it seems, but -- as a myelofibrosis (MF) patient myself -- your symptoms sound familiar.  I would definitely insist on a bone marrow biopsy for a definitive answer.  I seriously doubt that your hem doc will do the BMB during your first appointment.  As to whether or not s/he will be the one actually doing the BMB, I can't answer you.  Some of them will do it themselves, others will refer you to a specialist in that procedure.  Some will want you sedated for the procedure, others won't.  I have had two BMB's, and only had local deadening for both, and was fine.  The pain was annoying but tolerable.  Other people say that the pain was beyond belief, and won't have the procedure without some sort of anesthesia.  Guess it's an individual decision.

The other thing I would suggest is that you get copies of as many tests as you can, and in the future, always insist on copies of everything.  Even the best of doctors have so many patients, and will sometimes overlook something, or not notice something.  You have to learn to be your own advocate, and to find a doctor who is OK with that.  When I went to my very first hem/onc, I pulled out my list of questions and things I wanted to know more about, and began to question him.  He looked at me and said, "I tell my patients what I want them to know, I don't like for them to ask questions."!!!!!  And I said, "Byeeeee" 

Good luck at your appointment on Monday.  Be sure to let us know how it goes, and what the doc says.  And, by the way, Trey is right.  It would probably be better to move your post over to the Living with . . . MDS, MPD's etc., forum.  There will be more people there who will know what you're going through.  I don't normally check in on the CML forums, but when I saw your user name, "Itchy," I figured you were probably an MPN patient.

Hope you get some answers!


PS -- By the way, just so you know, myelofibrosis IS considered to be a form of blood cancer by both the doctors at Mayo Clinic and at MD Anderson. 

#5 Itchy


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Posted 23 June 2013 - 12:40 PM

I just wanted to say thank you all for your responses. I do now have a firm diagnosis and will go and officially I trod ice my self in that section. I do know that I will need all the support, advice, friendship and just understanding.

Real briefly, you are correct, I do not have CML. from my first BMB, I have 14% blast cells but ,y Hemotologist said it is not an accurate count. My bone core was not any good, it was just cartlidge. I had another BMB on Thursday and she asked for a rush and hopefully they will do just that. She said that my actual % number will likely go up and I may even be I. The AML %. It really doesn't matter which name they give me because either way for me, my treatment will be the same. I know I will have chemo and once I am in total remission, I will have a stem cell transplant. The o ly question with my treatment is really which chemo I get to have. If my percent doesn't go up by much, I can have Vidazia and if it does, I get to have the really strong chemo and be in the hospital the whole time.

I will write more in the please introduce yourself and then I do have questions and will find the appropriate place with my diagnosis to ask.

Thanks again,


#6 alexamay09


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Posted 23 June 2013 - 01:35 PM

Good luck Itchy. I am wishing you all the best. God Bless.


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