HI, I'm Dan from Buffalo, NY

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Offline dancam1

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HI, I'm Dan from Buffalo, NY
« on: April 10, 2006, 06:13:49 AM »
Hello, I'm Dan from Buffalo.  I am 40 and need some guidence.  As a child, I was Diagnosed with Thal minor.  However, after reading all the new info, I believe my disease to be some form of Thal Intermedia, and this is why, as a child, I was very very thin.  I am extremely pale, in college from time to time, my eyes would be jaundice especially during crunch time.  My Hg rarely has been above a 9, if that high.  My white blood cell count has droped to the 2000 range from time to time.  I have very high cheek bones.  I am always coming down with infections.  And last year, I had to have my Gall Bladder removed when a stone 11cm's was causing pain and scarring. 
     Now, here are my problems/questions.  I read somewhere that for people with Thal and Asthma (which I also have) that together they cause the bones to break down faster and can cause some extreme cases of Degernative Disc Disease/Joint Disease.  I have always had back pain, but in 2001, I had to go for emergency surgery when 2 discs in my C-section of my spine were so herniated that they crushed portions of my spinal cord.  During surgery, one of the discs actually came out of my spinal column, causing it to collapse.  My surgeon was great and was able to fix it and I can walk ok.  However, shortly afterwards, I started to have more back pain and sure enough, more discs in my c section were herniating, and a full scan showed 2 more in my L-section were also herniated, with the last one leaking spinal fluid.  Since my bones didn't do well for the first surgery, doctors are hesitant to do more until it becomes a necessity (surgery or being paralyzed).  To further complicate matters, I also have 3 cysts in my spinal canal (the condition is called Syringomyelia) which block the flow of spinal fluid to and from the brain and cause many other problems too.  Also, seemingly overnight a scholerosis has appeared in the middle of my spine in the T section.  It is a seperate pain from all the other back pain.
     The pain that I am in on a daily basis is quite extreme.  I am on 2 20mg oxy's per day as well as 6 10mg Loritab's per day.  My blood pressure is directly related to the amount of pain my system is in.  I can go from 120/80 to 220/120 during bad pain episodes or severe asthma attacks.  Since my pressure can be normal, I can't be given high blood pressure meds.  I can't work anymore, and am currently fighting with SSD (I am sure some others know what a pain that can be!) and am looking for any help to prove my case.  But my real problem is the horrible fatigue I experience from the Thal, asthma, spine problems, damaged tissue in the areas of the spine, cysts in the spinal canal, overall pain and all the pain pills I take for the pain.  Somedays, I can barely get out of bed.  Sometimes, it is the upper spine, sometimes lower. sometimes middle.  other times ,it is all the above.  If I am having a good back day, sometimes the Thal makes me more tired, or the asthma could act up.  It is always something it seems.  Can someone offer me some hope, options, ideas, papers, whatever you think I can use.  I need to know what I am up for in the long term.  Is there a relation between Thal, Asthma, Degernative disc/joint disease, and anything else that may have been overlooked? 
Thank you very much for your time.  I am sorry I was so long winded, but it is my first post and I wanted all of you to have a real picture of all the problems I am experiencing.
thanks again,
Dan

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Offline §ãJ¡Ð ساجد

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Re: HI, I'm Dan from Buffalo, NY
« Reply #1 on: April 10, 2006, 07:02:47 AM »
First of all, welcome to the group.

It is really sad to hear what you have been through and what you are going through!

I pray that you never have to experience the pain ever again. I had my joint pains but it was unrelated to Thal. and just an allergy. So after fixing that, I never had any problems.

Anyway, your problem seems to be different. I hope that it too is not related to Thal. By the way have you tried those special shaped mattresses for spine support etc.

Wishing you all the best!
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Offline Andy Battaglia

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Re: HI, I'm Dan from Buffalo, NY
« Reply #2 on: April 10, 2006, 08:11:18 AM »
Hi Dan and welcome to the group. I'm just down the thruway in Rochester and I went to college at Buff State. Nice to meet you.

You do exhibit many signs of intermedia. 9 is a very low Hb for a minor and with your other problems, you do have many of the clinical symptoms of intermedia. It's almost amazing your Hb is as high as it is considering the symptoms you have. Many of the problems you have are shared not only by intermedias but also majors. If you haven't already, I would suggest you have a blood serum ferritin test to check your iron level. Intermedias can become iron overloaded without ever transfusing, because the gut will absorb far more iron than needed and over time it can build to harmful levels that can cause many conditions and also make others worse.

Degnerative disk disease (DDD) is a problem in thals and may be a major cause of back pain in thal patients. Asthma tends to make many other conditions worse because of the lack of oxygen to the cells. Are you being treated for your asthma? Many of today's drugs are very effective. I've been on advair and singulair for several years and each test of my lung capacity has been better than the previous test.

As far as proving your case, I think you need to consult with a hematologist who is familiar with thalassemia. Your problems may all be related to thal and a disability classification may be in order, but many doctors will not recognize that your symptoms are characteristic of thal. Let me know if you need help locating a good hematologist in Buffalo.
Andy

All we are saying is give thals a chance.

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Offline jzd24

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Re: HI, I'm Dan from Buffalo, NY
« Reply #3 on: April 11, 2006, 04:53:47 AM »
Hi Dan,
     I am so sorry you are having so many problems. I agree with Andy, that you probably have Thal Intermedia. Your low hemoglobin, your prominate cheek bones, and all your other problems support this theory. I think it is crucial for you to get to a Thalassemia Center as soon as you can. That is what finally saved my life. I have a pretty severe intermediate thal and I was not doing very well in my mid-forties. I finally got to a Thalassemia Center in California, and got the expert help I needed, after years of no help.
     It sounds like your bone marrow is working overtime, as it does in intermedia, and that maybe it is time to start regular transfusions, and give your bone marrow a break.  I don't think you said you were getting transfused. Is your spleen enlarged? That may be causing you difficulties as well. I am just trying to give you advice based on my experiences, I am of course not a doctor.
     I can't say it enough to go to the experts. I went to many, many doctors, even to a well-known research and teaching medical center, but even their head hemotologist didn't know how to treat me. He actually gave me the wrong information (no shock to those of you who have been through the medical wringer). He should have told me he didn't actually know what to do, and referred me to someone who did, but he acted like he knew what he was doing.  :rotfl
     There are 5 Thalassemia Centers of Excellence in the U.S.   :smile  Contact the one nearest you right away!  I hope you get help soon, you need it, and you deserve it.  Jean

     

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Offline dancam1

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Re: HI, I'm Dan from Buffalo, NY
« Reply #4 on: April 11, 2006, 09:15:45 PM »
Hi Jean, it is nice to meet you.  You are around my age, so you may be experiencing some of the problems I am.  Have your fingers ever turned purple-ish?  That happens in asthma (which I am not having) and in poor circulation (wihich my fingers are not cold at all) so it is a bit freaky (they look like those dead person fingers in the Saw movies :)
    How is your back?  I wish I could prove that there is a connection between thal and DDD or Degernative Joint disease.  So far, there is only one study.  How are the other parts of your body holding up?  For me, my spine has started to break down, I now need readiing glasses and everything else I listed in my post.  And my energy levels are horrorendous.  I hope you have fared better then I have.  Can you still work?
talk to you soon
Dan

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Offline jzd24

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Re: HI, I'm Dan from Buffalo, NY
« Reply #5 on: April 12, 2006, 03:34:06 AM »
Dan,
     It is freaky that you talked about purplish fingers. One day about 2 months ago, I was at work and started feeling weird. My fingers just below my fingernails were turning purple, and my legs above my knees turned purple. I was kind of lightheaded and felt out of it. The school nurse told me to go to the emergency room and get checked out. Anyway, to make a long story short, there was miscommunication with my doctor's office, and he never called the emergency room to ok a visit (insurance issues), so I just went home. It finally went away after I rested for quite awhile.  :dunno
     It scared me because my mother turned that color on her legs and body right before she died. I wasn't cold either, or having asthma (which I also have). Wow. It is amazing to talk to you! This is my 29th year of teaching school, but as I just wrote in another post, I am really having difficulty working. I started transfusions 3 years ago, and that helped - I was able to continue working, but now my energy level is not very good and I am in a lot of pain.
     You have had a terrible time. Do you get transfusions? I really think they would help you if you don't get them already. Also, like I said before, your spleen can cause a lot of trouble. Keep in touch, Jean      :wave

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Offline Andy Battaglia

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Re: HI, I'm Dan from Buffalo, NY
« Reply #6 on: April 12, 2006, 05:07:48 AM »
The color sounds like a lack of oxygen to the extremities. I've been poking around onlne and ran into Raynaud's phenomenon. If you have the time take a look at this page and see if it describes the episodes accurately.
http://www.wrongdiagnosis.com/r/raynauds_phenomenon/symptoms.htm

And on this page, it lists underlying conditions, some of which are found in thals, like pulmonary hypertension.
http://www.wrongdiagnosis.com/r/raynauds_phenomenon/underly.htm

Andy

All we are saying is give thals a chance.

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Offline Danielle

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Re: HI, I'm Dan from Buffalo, NY
« Reply #7 on: April 26, 2006, 01:35:16 PM »
Hi Dan,

While reading your post again, you brought something to my attention.  You said you are taking "2 20mg oxy's per day as well as 6 10mg Loritab's per day" and that's a lot of narcotics for a system to have on a daily basis, for a long period of time.  This can be causing a lot of your fatigue, which I can tell you from experience.

As a Thal Major, I've had many problems with my back, and have been in severe pain.  I'm still in pain as I write this, but sometimes it's just so unbearable that I need to be admitted into the hospital for IV pain meds.  I've been on Morphine and Fentanyl pumps, and have been pumped with Dilauded.  I've had Oxycodone, Vicodin, Demerol, and everything else you can think of, but nothing ever worked.  The one thing that I noticed, though ... is that after having all those pain meds over time, I became more depressed and even more tired than I ever was with having Thal.  I'm just letting you know this, because these medications can be making your Thal Minor/Intermedia much worse than what it normally may be.  I know that the pain is terrible, as back pain is one of the hardest things to treat, but maybe there are other meds that you can try that won't cause the same kind of central nervous system depression.  I know it's tough, but it may make you feel better in the long run when you're not taking these certain medications so often.   :(

I hope you're feeling a bit better since the last time you posted.   :hug

Re: HI, I'm Dan from Buffalo, NY
« Reply #8 on: April 28, 2006, 06:51:38 AM »
Hi Dan
Its sad to hear the pain you have to go through. I would like to emphasize here, definistion of thalassemia itself states that it is heterogeneous type of blood disorder. But my concern is usually its easy to diagnose thalassemia minor as they have high hemoglobin A2 usually above 3.5. How you have been diagnosed? Do you have family history of hemoglobinopathies? These bony changes suggest to me that you are having severe ineffective erythropoiesis may be. I think its important to get correct diagnosis and follow the treatment. Important thing is all the physicians in North America are not well aware of thalassemia and even some hematologists are not experts on all these things.

 

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