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Old 07-05-2005, 12:20 PM   #1
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Unhappy Anyone been tested for immunological/genetic disease causing your back problems?

Hi,
I've posted here some before and I have another question I'm hoping someone can answer. I had another MRI a few weeks ago ordered by my pain management dr. and found out that I have 4 dessicated/collapsed thoracic discs, and 2 bulging thoracic discs, along with the compression fractures I already knew I had. I also have 2 herniated lumbar discs I've had for a few years. The problem with all this is that I am 21 years old, I never had an injury or accident, and these problems just keep getting worse and worse for no reason. My doctor said that he shouldn't see these problems in someone 3 times my age, since they are in the thoracic, and he told my PCP to order bloodwork to check for immunological markers and genetic conditions. I saw my PCP today and for some reason, she thinks this is unnecessary because I saw a rheumatologist 3 years ago, who did Vitamin D, calcium, and metabolic profile. My question is: I do not think these are the same tests, are they? She refused to order the bloodwork and I'm quite annoyed because there really is no reason I'm having all these back problems and a genetic condition would help me make sense of it.
Also, my question is, does anyone here have back problems caused specifically be auto-immune or genetic disease? What kind of condition would be causing all these disc and bone problems??
Thank you all for your help, hope you guys are having a good day,
Jen

 
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Old 07-05-2005, 01:11 PM   #2
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Re: Anyone been tested for immunological/genetic disease causing your back problems?

Jen, I'm so sorry I can't answer your questions, I have to say though it is time to find a new dr, these conditions can be serious and I can't beleve your PCP is blowing you off this way.
Can't your pain management dr order you these test or refer you to a dr that will?
I'm so sad to hear your so young and going through so much.
I don't see so much as why this is happening being so important at this moment as to what they can do for you, I'm sure that if it is genetic you'll want to know but for now it seems you need guidance and help with what your conditon is.
I have thoracic spine problems also and know how serious it is and untreatable, at least mine is.
I hope you can find some answers and get help soon.
Linda

 
Old 07-05-2005, 08:22 PM   #3
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Re: Anyone been tested for immunological/genetic disease causing your back problems?

Hi Linda,
Thanks so much for your reply, I think you are right...it is time to find a new dr. The only reason I hesitate is because out of ALL the many dr's I have seen she is the only one who has prescribed me the pain medication that I desperately need, and that was only after a year and a half of horrible constant pain. I am only on 40 mgs oxycontin a day, and she refuses to up the dosage...but still, I am terrified that if I leave her, I will not find another dr. who will prescribe for me. Even pain management clinics will not give me anything, they all say"you're so young....you'll get addicted...and so on.
I recently went to johns hopkins, and surgeons told me my only option is a ten or more level fusion of my entire thoracic spine...I am seriously considering doing the surgery next summer, because I just cannot live like this anymore.
What exactly are your problems in your thoracic spine? I know it is hard to find someone who will touch it, but in my experience, if the pain goes on long enough, they will suggest it. When this first began, no way would they have done surgery, but now that it's been 3 years, and I am in so much agony and non-functional, the last few have told me they will do it if I choose. What;s your experience been?
Thanks again,
Jen

 
Old 07-06-2005, 12:29 PM   #4
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Re: Anyone been tested for immunological/genetic disease causing your back problems?

Jen-
I was wondering if you could tell me some of your symptoms? I also have had lumbar problems at L5-S1 and have had two Laminect/Disect. on it. After my first surgery in jan. 2004, I started having mid-back pain. My doctors just thought it was b/c my muscles were weak and never really helped me with it. I did have an MRI a year ago but nothing showed on it. I just had another MRI yesterday b/c my pain is progressivly worse and I can't stand it. I should get my results tomorrow. Thanks for your help!
~Mandy~

 
Old 07-06-2005, 01:26 PM   #5
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Re: Anyone been tested for immunological/genetic disease causing your back problems?

Jen, My spine problems stated 6 yrs ago when I fell, it began with problems at the L4-5 and L5-S1, it was a WC claim and I went untreated for to long and now have permanant damage to the S1 nerve, when I fell I had pain in the mid back and neck but nothing really bad compared to the lumbar problems.
Then about 3 yrs ago I felt like someone hit me mid abck with a baseball bat. My Mri Showed T5-6 bulging and the T7-8 with cord comp. I won't even go in to al the symptoms but pain is a everday event in my life even with the meds.
My cervical shows C5-6 C6-7 bulges with effacement and spondylosis.
Anyway when my Pm got the report about my thoracic he wouldn't even see me again untio I saw a NS, so long story the NS and others have said it is way to dangerous to opeate..
I can understand your concern about not being able to get meds, I have dealt with this for the 6 yrs I have been this way, I recently had a SCs implant done but it failed and now we are talking of maybe going with the pain pump since I won't be getting better.
I hope though that you can find answers and help soon.
Linda

 
Old 07-07-2005, 07:41 PM   #6
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Re: Anyone been tested for immunological/genetic disease causing your back problems?

Hi Mandy,
Sorry to hear about your bad back, are you only 17? Back pain really sucks, especially when you're young and should be having the time of your life. I never imagined it could be this hard. My symptoms in my thoracic is basically pain all across my middle back, kind of like a band straight across a good portion of it. Most of the time it feels like an intense throbbing, aching pain, and sometimes it is more sharp and hurts with moving, etc. But it is CONSTANT, no matter what, every second of my life for the last 3 years. It even hurts more wearing a bra, like the added pressure makes it worse or something. Sometimes it's like a stabbing pain straight through to my chest in the front. Also I have grinding that you can easily hear when I move my back in that area. Are these similar to your symptoms, what kind of pain are you having? Let me know what your MRI shows, I hope you can find some answers.

Linda, I'm really sorry to hear about all your problems too. It really sucks that they can't do anything for you. When are you going to have your pain pump trial?
I will be praying that the trial is a great success for you....where was your SCS implanted at? I have been wondering if that is an option for me but I'm just not getting ANYWHERE because of my age, I think, nobody wants to touch it, or take it seriously. I'm really worried that more discs are going to collapse and my whole spine will just collapse, since 6 are now shot since my last MRI 2 years ago...it just doesn;t make sense to me. I don't get it. And I take it from the lack of responses that it's not very common for these collapses/fractures to be genetic.
Anyway, I'm praying you all find some relief and answers, and let me know how things go for you! Have a great day!
~Jen

 
Old 07-08-2005, 10:18 AM   #7
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Re: Anyone been tested for immunological/genetic disease causing your back problems?

Jen,

Same problems and frustrations and nobody could find mine either. Wound up with a severely rare disease called systemic mastocytosis. It can effect other parts of your body as well. Most docs and labs never heard of it and donít know how to test for it properly if they do test it because of it is so rare. I am not saying you have it but I have met others who do now too. Another couple things they can test for with a cortisol test is Cushingís syndrome or high PH in the blood called something like acidosis. Those can be tested if all the obvious hormones tests are good. I can be reached in the rare section if you have any other questions.

PLEASE KEEP ME POSTED.

God Bless and good luck

P.S. Be careful with the pain meds. I am not allowed any.
With my disease some drugs antibiotics and even anastetics from a dentist can cause it to progress worse and Anaphylaxis shock can develop causing me to pass out.

P.P.S. Are there any other symptoms? Skin spots, rashes or itching, bowel trouble, dizzyness, trouble in heat or sun or spicey foods? By the way, This is a genetic type auto immunes kind of disease. It works on Histamine release as well. Ask your doctor to try a BETA tryptase test. Not just tryptase. Beta tryptase. If his lab cant do it right send it to mayo or something. Another test should be a urine histamine test.


JohnD

Last edited by Johnster; 07-08-2005 at 10:36 AM.

 
Old 07-09-2005, 09:36 PM   #8
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Re: Anyone been tested for immunological/genetic disease causing your back problems?

Hi Jen,
Thanks for replying back to me. I actually started having back problems when I was 16, but found these boards when I was 17, as I am now 18. I recently graduated from high school. It was really hard seeing my friends playing all the sports that I loved to play. I had been planning on playing college basketball until I got injured. I started having pain the summer before my junior year. I found out I had a herniated disc at L5-S1. I had epidurals and all kinds of different treatments. I tried playing my junior basketball season but had to quit half way into the season because I didn’t know how to walk anymore. I had a laminect/dissect., but it failed and I started to have mid-back pain so I switched doctors. The new doctor wanted to do a fusion, but I felt I was too young for that kind of surgery. I actually switched doctors again and traveled 15 hours to Texas for this doctor. I wanted to learn about the artificial disc replacement but he thought I should have a repeat of my first surgery so I agreed. As of right now my lower back and legs feel pretty good. My mid-back, however, is getting worse. I have to wear a tens unit every night just to fall asleep. I also wear it when I know I have to sit a long time. My pain feels like I have pressure on my spine and it burns all across my mid-back. I got my MRI results and it showed I have disc desiccation at T7-8, a bulge at L4-L5, and a left bulge at L5-S1. The news really hit me. I knew something was wrong but I didn’t want another disc problem. I hate looking at my future, as I know I will always be in some type of pain. Thanks for listening.
~Mandy~

 
Old 07-09-2005, 11:00 PM   #9
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Re: Anyone been tested for immunological/genetic disease causing your back problems?

Hi,

I think the important key words that make Jenís case different here is she mentioned in the first post, ďcompression fracture(s)Ē. For those who never heard of this or do not understand this is not a term used commonly for back disk problems. For those who donít know what a compression fracture is it is commonly caused from bad to severe Osteoporosis. They probably should not call it a fracture. Your bones in your back ĎVertebraeĒ pulverize into powder not just break like the word fracture usually means. This severe of a case of this bone disease is not too common in people under 21 unless there are other health issues or blood problems. Her other problems including discs may follow once vertebrae start to erode or pop. I may be wrong but I gather her doctors probably have done much blood work and tests and still have not found a cause. If so, I am sorry but thatís like changing or jumping the battery on the car each week without finding whatís causing it to go dead. I believe thatís why she started the topic of ďimmunological/genetic disease causing your back problemsĒ? Thatís my guess anyway?

Good Luck to you all

Sincerely
JohnD

 
Old 07-10-2005, 10:19 AM   #10
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Re: Anyone been tested for immunological/genetic disease causing your back problems?

Hi,
Hey, thanks JohnD for replying, I did do some research into systemic mastocytosis, and also looked at the posts on the Rare board about it. I do have some of the symptoms I guess but many of them I don't have. I actually do have a problem with fainting, or coming close to it, it happens every few months and I have no idea why. I was diagnosed at one time with Inflammatory bowel disease, actually right before the back stuff started, which I know is auto-immune, but I really haven't had any trouble with it for at least a year. I really have not been tested for much of anything. I saw a rheumatologist who was the WORST dr. I have ever seen and he only did a few blood tests, to make sure I didn't have osteoporosis, and also a DEXA scan, but my bone density was above average...so the fractures are not from osteoporosis, but I have no idea what else could be causing all of this! And I REALLY want to know what is causing this so I can put a stop to the ongoing destruction and collapse of my spine! It's driving me crazy.
I saw too how you said you won't try a fusion because it'd be like nailing rotten wood....that makes a lot of sense to me, I have wondered if I do give the fusion a shot, my other discs will probably collapse right away from the added stress, since they collapse anyway for no reason at all. Are you still in horrible pain from your compression fractures, or have they healed at all?

Hey, Mandy, wow, I really feel for you with the problems you're having. I too hate looking at the future and knowing that the rest of my life, probably, will be pain. I can't stand the thought of it. I had to drop out of school in February because I was in so much agony, I couldn't stand the sitting constantly, and the pain was just too unbearable. I am trying to go back this fall, but we'll see how it goes I guess. I just don't see how my life will ever work unless something changes. Yeah, definitely let me know how things progress for you; what did they say about the disc in your thoracic?
Anytime you want to post, I'll listen, I can definitely relate to what you're feeling!

anyway, this is long, thanks again for replying and I wish you guys all the best with it,
God bless,
Jen

 
Old 07-10-2005, 11:13 AM   #11
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Re: Anyone been tested for immunological/genetic disease causing your back problems?

Jen,

Iím glad to here you did good on the density scan but that doesnít make much sense if you look up the true definition for compression fractures. Perhaps you had a bone density problem years ago that have gotten better since you healed? Yes I am still in pain from it all and hope it gets better in time.

I will say some prayers for you that you will find the answers you seek.

God Bless you all

JohnD
P.S. I think I should make note that most people with my disease do not have all the listed symptoms and only have some or all of them.

 
Old 07-10-2005, 11:17 AM   #12
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Re: Anyone been tested for immunological/genetic disease causing your back problems?

Jen,

Iím glad to here you did good on the density scan, but that doesnít make much sense if you look up the true definition for compression fractures. Perhaps you had a bone density problem years ago that have gotten better since you healed? Yes I am still in pain from it all and hope it gets better in time.

I will say some prayers for you that you will find the answers you seek.

God Bless you all

JohnD

P.S. I think I should make note that most people with my disease do not have all the listed symptoms and only have some or all of them in any combo.

 
Old 07-10-2005, 10:18 PM   #13
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Age17witbadback HB User
Re: Anyone been tested for immunological/genetic disease causing your back problems?

Jen,
Thanks for listening. I will be attending college this fall and I do have the fear of not being able to sit through classes. I am currently taking online college classes so I have less to take. I’m glad I found someone that kind of relate to me (although I wish you weren’t in pain). I talked to my physical therapist (also known as my boss because I work for her) on Friday and she said she was going to start treating me on Monday. I -guess the T7-8 disc desiccation is causing me all my thoracic pain. I don’t know about anything anymore. I mean once I start feeling a little better, something else always comes a long so it’s like I am never going to be without pain ever again. It just sucks! I will also listen to your posts whenever!
~mandy~

 
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