Re: No granulomas, Spine pain

[Guest guest]

my entire spine has

> been MRI'd, with lots of things, but no granulomas

Boy do I understand. My spine has bone spurs the full length, and guess what--those spurs are granulomas. They are calcifications caused by my immune system sending a message to the brain to send white cells to this area of the spine (naturally the nerve root where it goes thru the tiny space to the spine), and then sending more white cells, and more, but not sending the message to the brain to send the clean up cells to take away the old white cells. So the cells keep building up on each other, causing the older ones to calcify, and block the hole that the nerve roots come thru.

The real challenge is that I understand this, but my MD's didn't. I only in the last year, started being able to put the puzzle together, and I always discuss this stuff with the MD's in LA, to get my answers.

Never thought I'd be playing 20 questions with my MD's.

Tracie

[Guest guest]

Are you serious, Tracie?!?...that is what my MRI reports are saying, too!...how did you convince your docs that the spurs were granulomas?!? ... and how did you ever figure this one out?...I said before, that I want you to start treating me!...just don't get in a tizzy when I tell you that my health insurance has been canceled because of my insurance company!

Joan

Boy do I understand. My spine has bone spurs the full length, and guess what--those spurs are granulomas. They are calcifications caused by my immune system sending a message to the brain to send white cells to this area of the spine (naturally the nerve root where it goes thru the tiny space to the spine), and then sending more white cells, and more, but not sending the message to the brain to send the clean up cells to take away the old white cells. So the cells keep building up on each other, causing the older ones to calcify, and block the hole that the nerve roots come thru.

[Guest guest]

how did you convince your docs that the spurs were granulomas?!? ... and how did you ever figure this one out?..Actually, my Chiropractor and the original pulmonologist that did my bronchoscopy and treated my sarc - back in 1992 where the ones to put this together. The DC actually was treating me for very severe fibromyalgia caused by an on-the-job injury. He couldn't understand how I could continue to regress with all the care I was getting, and why there was constant nerve root inflammation and pain, even with the extremely high doses of pain meds. This was the time frame when I was becoming addicted to pain meds, and was having to self-medicate He was the only one that truly knew what level of drugs I was taking--and he wasn't totally sure. It was my pulmonologist -Dr. Baumann-in Nebraska now, that explained the build up of the white cells and how they calcify. He's also the one that explained that it's the structural changes to the organs once the granulomas get in there that make it so dangerous for us. He actually spoke with my DC, and they put this part of the puzzle together. It was the DC that had the professional integrity to sit with my xrays and a magnifying glass looking at the nerve root openings that spotted the "spurs." I said before, that I want you to start treating me!..LOL!--yep, 'ol doc tracie, with her High School Diploma, 6 months of JC, and an expired state Joint Commission Allied Health Personnel in Ophthalmology-Assistant, --shoot, I could do what our MD's are doing--LOL! .just don't get in a tizzy when I tell you that my health insurance has been canceled because of my insurance company! Because of the insurance company, or your employer? Explain, please. BTW--my health insurance was dropped, reinstated, dropped, and reinstated again--now I have it until I turn 65. Medicare is my prime, and my phone company insurance is 2nd. Prior to qualifying for Medicare, the employer--SBC, tried their hardest to prove I wasn't sick. But the same day that my STD-short term disability ran out, my SSDI got approved, and since the STD people had fought so hard to deny my disability and lost, the LTD people realized that to spend the extra money to try to fight this wasn't worth it. After all, they're directly across the hall from each other-- and even the government said I was disabled.

It was the SSDI people that normally would have been the hardest to get through, but with the explanation of "like" disease's that came up, and the fact that my sister was with me, and had to re-explain everything that was being said--( I couldn't follow the conversation, or understand the 6 months that they go back in time to start payments, etc.) --that they truly SAW what was going on with me. I also had great letters from my docs, my friends- one said that talking with me reminded her of all the "early Alzheimers" patients she had taken care of when we worked together at an internal medicine office. Another said that we had been daily lunch buddies for many years, and that I'd regressed from being "her boss and educator" to having to have my work double checked because I was missing so much. (She had since become my "boss.") Humbling to say the least.

Share this info with your orthopedic MD, and also search "Osseous Sarcoidosis"--or sarcoidosis and bones-- you'll be amazed.

Hugs,

Remember to use ice to get the inflammation of the nerves down, heat to relax the muscles-- :-)

Tracie

PS. It's that wonderful bone spur at the nerve root opening that is causing alot of my numbness in my hands and legs-- severe "pinched nerve" effects.

[Guest guest]

how did you convince your docs that the spurs were granulomas?!? ... and how did you ever figure this one out?..Actually, my Chiropractor and the original pulmonologist that did my bronchoscopy and treated my sarc - back in 1992 where the ones to put this together. The DC actually was treating me for very severe fibromyalgia caused by an on-the-job injury. He couldn't understand how I could continue to regress with all the care I was getting, and why there was constant nerve root inflammation and pain, even with the extremely high doses of pain meds. (it sounds like you've had neurosarc since just about the time your pulm. sarc was diagnosed?...or am I confused with timeframe?...I'm only asking because I'm curious to know how many are intially diagnosed with pulm. and then turn neuro several years later) This was the time frame when I was becoming addicted to pain meds, and was having to self-medicate He was the only one that truly knew what level of drugs I was taking--and he wasn't totally sure. It was my pulmonologist -Dr. Baumann-in Nebraska now, that explained the build up of the white cells and how they calcify. (I'll be taking this to my doctor tomorrow and other doc's over next few weeks) He's also the one that explained that it's the structural changes to the organs once the granulomas get in there that make it so dangerous for us. He actually spoke with my DC, and they put this part of the puzzle together. It was the DC that had the professional integrity to sit with my xrays and a magnifying glass looking at the nerve root openings that spotted the "spurs." (A radiologist recently reported on 'many spurs' at multiple levels throughout cervical and thoracic spine...this is in addition to several herniated disks in my neck, along with nerve impingement at L4-L5 with bulging disc .. my neck is the only part of me that doesn't hurt--I wonder which of my docs I can convince to put out a magnifying glass or at a minimum take this into consideration...I wonder if the radiologist would be open to it?...I'm having a Chest CT again next week ... assuming the Thoracic spine "spurs" are actually granulomas, do you think they will show up as such vs. "spurs"?) I said before, that I want you to start treating me!..LOL!--yep, 'ol doc tracie, with her High School Diploma, 6 months of JC, and an expired state Joint Commission Allied Health Personnel in Ophthalmology-Assistant, --shoot, I could do what our MD's are doing--LOL! .just don't get in a tizzy when I tell you that my health insurance has been canceled because of my insurance company! Because of the insurance company, or your employer? Explain, please. (My employer will cancel if insurance co. does not make an approval by a certain date -- which I can't seem to pull that out of anyone what date that may be -- this doesn't sound very legal, though, does it -- if ins. deny's claim, medical will be cancelled) BTW--my health insurance was dropped, reinstated, dropped, and reinstated again (I'm waiting/expect that to happen) --now I have it until I turn 65. Medicare is my prime, and my phone company insurance is 2nd. Prior to qualifying for Medicare, the employer--SBC, tried their hardest to prove I wasn't sick (is this what co. ins. companies are paid to actually do?). But the same day that my STD-short term disability ran out, my SSDI got approved, (I was not supposed to apply for SSDI until my STD ran out-my LTD ins. co. hires a company to complete the papers and "get a win", even if it takes several times -- I really believe SSDI will be easier than my LTD co.) and since the STD people had fought so hard to deny my disability and lost (and how did they lose?...in other words, who was fighting them?..you?...your dr.'s? ... my neuro is not going to fight for me...I will be sending another email on that later ... and need your advice), the LTD people realized that to spend the extra money to try to fight this wasn't worth it. After all, they're directly across the hall from each other-- and even the government said I was disabled. It was the SSDI people that normally would have been the hardest to get through, but with the explanation of "like" disease's that came up, and the fact that my sister was with me (I will not be meeting with them in person, since my LTD co. has this other co. applying for me--can I still request an in-person interview with them?...do you suggest that?...I'd like to speak with them myself), and had to re-explain everything that was being said--( I couldn't follow the conversation, or understand the 6 months that they go back in time to start payments, etc.) --that they truly SAW what was going on with me. I also had great letters from my docs (how did you convince your docs to write letters?...I cannot even get mine to complete the disability paperwork themselves...they get their nurses or office staff to do it...and they are not doing a very good job...I'm so disgusted with the whole group of everyone right now), my friends- one said that talking with me reminded her of all the "early Alzheimers" patients she had taken care of when we worked together at an internal medicine office. Another said that we had been daily lunch buddies for many years, and that I'd regressed from being "her boss and educator" to having to have my work double checked because I was missing so much. (She had since become my "boss.") Humbling to say the least (I understand!...did you receive what I sent directly to your e-mail and did not post?...that was very hard for me to read, too).Share this info with your orthopedic MD (got rid of that one when he told me last January I had tendanitis (sp?) and also injected my spine with epidurals, knowing I had sarc ... and that is what did me in completely last spring ... now, my hands are tingling...oh, and my neuro told me today he would not see me or do an EMG since he wants another teaching hospital to "figure out what is wrong with me" ... and I'm not seeing the teaching hospital he wants me to go to until January!...I don't think he believes my "sarc specialist" at the other teaching hospital I'm going to...this idiot is supposed to be one of my doctors ... he is rude, doesn't explain things, doesn't follow-up, interrupts me, and stands up when he is done our appt., ... my last visit with him, he had done all of the above, which did not allow me the time to tell him my arms/hands fall asleep ... I know I need an EMG, but, quote his nurse, "he will not order one and told you to go to UofPA to let them figure out what is wrong with you"), and also search "Osseous Sarcoidosis"--or sarcoidosis and bones-- you'll be amazed. (going to do that right now!)Hugs,Remember to use ice to get the inflammation of the nerves down, heat to relax the muscles-- :-)TraciePS. It's that wonderful bone spur at the nerve root opening that is causing alot of my numbness in my hands and legs-- severe "pinched nerve" effects. (are you saying we do not have "pinched" nerves?...I'm getting tired of that phrase, since I do not feel like that is what my problem really is -- and the idiot neuro insists on using that phrase)

[Guest guest]

I'll be green this time--lol!

how did you convince your docs that the spurs were granulomas?!? ... and how did you ever figure this one out?..Actually, my Chiropractor and the original pulmonologist that did my bronchoscopy and treated my sarc - back in 1992 where the ones to put this together. The DC actually was treating me for very severe fibromyalgia caused by an on-the-job injury. He couldn't understand how I could continue to regress with all the care I was getting, and why there was constant nerve root inflammation and pain, even with the extremely high doses of pain meds. (it sounds like you've had neurosarc since just about the time your pulm. sarc was diagnosed?...or am I confused with timeframe?.My actual dx for NS was just 3 years ago. but I started out with it being multisystem--..I'm only asking because I'm curious to know how many are intially diagnosed with pulm. and then turn neuro several years later) Many of us start out pulm. But it can and does start wherever it wants. Some will never have pulm problems. This was the time frame when I was becoming addicted to pain meds, and was having to self-medicate He was the only one that truly knew what level of drugs I was taking--and he wasn't totally sure. It was my pulmonologist -Dr. Baumann-in Nebraska now, that explained the build up of the white cells and how they calcify. (I'll be taking this to my doctor tomorrow and other doc's over next few weeks) I know Dr. B gave me a very "rudimentary" explanation-- but from all I've read--he's right on. He's also the one that explained that it's the structural changes to the organs once the granulomas get in there that make it so dangerous for us. He actually spoke with my DC, and they put this part of the puzzle together. It was the DC that had the professional integrity to sit with my xrays and a magnifying glass looking at the nerve root openings that spotted the "spurs." (A radiologist recently reported on 'many spurs' at multiple levels throughout cervical and thoracic spine...this is in addition to several herniated disks in my neck, along with nerve impingement at L4-L5 with bulging disc .. my neck is the only part of me that doesn't hurt--I wonder which of my docs I can convince to put out a magnifying glass or at a minimum take this into consideration...I wonder if the radiologist would be open to it?...I'm having a Chest CT again next week ... assuming the Thoracic spine "spurs" are actually granulomas, do you think they will show up as such vs. "spurs"?) Some may be "spurs", some may be sarc "cysts" or "granulomas. Remember, it can also be in the blood cells, in the blood stream itself. I said before, that I want you to start treating me!..LOL!--yep, 'ol doc tracie, with her High School Diploma, 6 months of JC, and an expired state Joint Commission Allied Health Personnel in Ophthalmology-Assistant, --shoot, I could do what our MD's are doing--LOL! .just don't get in a tizzy when I tell you that my health insurance has been canceled because of my insurance company! Because of the insurance company, or your employer? Explain, please. (My employer will cancel if insurance co. does not make an approval by a certain date -- which I can't seem to pull that out of anyone what date that may be -- this doesn't sound very legal, though, does it -- if ins. deny's claim, medical will be cancelled) It sounds like your employer is telling the insurance company--TAKE CARE OF OUR EMPLOYEES WHEN THEY BECOME PATIENTS-- GOOD IDEA, BUT IF THE EMPLOYER DROPS THE INSURANCE, THERE IS NO GUARANTEE THAT YOU'D BE ACCEPTED ANYWHERE ELSE--(OR FOR THAT MATTER--ANY OF THE OTHER HEALTHY EMPLOYEES. ) THIS HONESTLY IS NOT IN YOUR BEST INTEREST, EVEN IF THATS WHY YOUR BOSS IS DOING THIS. BTW--my health insurance was dropped, reinstated, dropped, and reinstated again (I'm waiting/expect that to happen) --now I have it until I turn 65. Medicare is my prime, and my phone company insurance is 2nd. Prior to qualifying for Medicare, the employer--SBC, tried their hardest to prove I wasn't sick (is this what co. ins. companies are paid to actually do?)tHIS IS WHAT THE INS COMPANIES HIRE OUTSOURCE EXAMINERS--THEY DON'T KNOW MEDICINE, MOST NURSES HAVE A RUDIMENTARY KNOWLEDGE (OFTEN TIMES MORE THAN THE md), SO THEY HIRE "CASE MANAGERS" TO MAKE THE DECISIONS. THEY KNOW FULL WELL THAT 90% + WILL BE DENIED THE FIRST AND MAYBE 2ND TIME OUT, BUT KEEP AT IT-- THEY WILL GIVE. . But the same day that my STD-short term disability ran out, my SSDI got approved, (I was not supposed to apply for SSDI until my STD ran out-my LTD ins. co. hires a company to complete the papers and "get a win", even if it takes several times -- I really believe SSDI will be easier than my LTD co.)FOLLOW THE RULES OF THE LTD PEOPLE. HOWEVER INSIST THEY START THE PROCESS AT 6 MONTHS INTO YOU BEING OFF WORK, AS SSDI WILL TAKE ABOUT 6 MONTHS TO PROCESS EVERYTHING. THAT WAY, IF YOU GO THRU THE 1ST TIME, AND YOU MIGHT--I DID-- YOU'LL GET YOUR CHECK STARTING RIGHT WHEN YOUR STD RUNS OUT. BUT BECAUSE YOU ARE UNION , FOLLOW ALL THE RULES SO THAT THEY CAN'T COME BACK AND SCREW YOU UP ON STD OR LTD. and since the STD people had fought so hard to deny my disability and lost (and how did hey lose?...in other words, who was fighting them?..you?..ME.your dr.'s? ..yES. my neuro is not going to fight for me...I will be sending another email on that later ... and need your advice), THEY LOST BECAUSE WE HAD THE XRAYS, MRI'S, CT'S, NEUROPSYCHE TESTING, EMG'S ALL SHOWING THE SIGNS THAT CORRELATED TO THE SYMPTOMS OF SOMEONE WITH NS. SINCE WE HAD PROVEN LESIONS IN MY LYMPHS IN AND OUT OF MY LUNGS-- THEY DIDN'T HAVE THE EXTRA TO DISPROVE MY ILLNESS. BTW-- I HAD 2 EX-EMPLOYERS SING MY PRAISES, AND STATE ON PAPER THE CHANGES THAT HAPPENED. the LTD people realized that to spend the extra money to try to fight this wasn't worth it. After all, they're directly across the hall from each other-- and even the government said I was disabled.

It was the SSDI people that normally would have been the hardest to get through, but with the explanation of "like" disease's that came up, and the fact that my sister was with me (I will not be meeting with them in person, since my LTD co. has this other co. applying for me--can I still request an in-person interview with them?...do you suggest that?...I'd like to speak with them myself), THEY WILL HAVE TO OFFER YOU A CHANCE TO BE AT THE INTERVIEW--THAT IS THE LTD PEOPLE WILL HAVE TO DO THIS. TAKE SOMEONE ELSE THAT CAN TALK FOR YOU, AND WITH THE MD'S. and had to re-explain everything that was being said--( I couldn't follow the conversation, or understand the 6 months that they go back in time to start payments, etc.) --that they truly SAW what was going on with me. I also had great letters from my docs (how did you convince your docs to write letters?...I cannot even get mine to complete the disability paperwork themselves...they get their nurses or office staff to do it...and they are not doing a very good job...I'm so disgusted with the whole group of everyone right now), yA KNOW, i CAN'T FOLLOW WORTH SHIT FORMS, SO I END UP FILLING OUT MY SUBJECTIVE COMPLAINTS, DX'S THAT I HAVE, ETC AND THEN GIVING IT TO THE STAFF-- I ALWAYS HAVE TO APOLOGIZE, BUT THEY'VE COME TO UNDERSTAND. my friends- one said that talking with me reminded her of all the "early Alzheimers" patients she had taken care of when we worked together at an internal medicine office. Another said that we had been daily lunch buddies for many years, and that I'd regressed from being "her boss and educator" to having to have my work double checked because I was missing so much. (She had since become my "boss.") Humbling to say the least (I understand!...did you receive what I sent directly to your e-mail and did not post?...that was very hard for me to read, too) hONESTLY, I DON'T REMEMBER-- PLEASE RESEND IT IF YOU CAN.

..

Share this info with your orthopedic MD (got rid of that one when he told me last January I had tendanitis (sp?) and also injected my spine with epidurals, knowing I had sarc ... and that is what did me in completely last spring ... now, my hands are tingling...oh, and my neuro told me today he would not see me or do an EMG since he wants another teaching hospital to "figure out what is wrong with me" ... and I'm not seeing the teaching hospital he wants me to go to until January!...I don't think he believes my "sarc specialist" at the other teaching hospital I'm going to...this idiot is supposed to be one of my doctors ... he is rude, doesn't explain things, doesn't follow-up, interrupts me, and stands up when he is done our appt., ... my last visit with him, he had done all of the above, which did not allow me the time to tell him my arms/hands fall asleep ... I know I need an EMG, but, quote his nurse, "he will not order one and told you to go to UofPA to let them figure out what is wrong with you"), and also search "Osseous Sarcoidosis"--or sarcoidosis and bones-- you'll be amazed. (going to do that right now!) UOFPA IS SUPOSSED TO HAVE A VERY GOOD SARC DOC. GIVE DR. ROBERT BAUGHMAN A CALL, OR EMAIL HIM, AND HE WILL SEND YOU A NAME. i BELIEVE HE'S IN CHICAGO.

Hugs,

Remember to use ice to get the inflammation of the nerves down, heat to relax the muscles-- :-)

Tracie

PS. It's that wonderful bone spur at the nerve root opening that is causing alot of my numbness in my hands and legs-- severe "pinched nerve" effects. (are you saying we do not have "pinched" nerves?.nO, OUR NERVES ARE BEING PINCHED, OR IMPINGED-- FOR SURE, BECAUSE THE OPENING FOR THE NERVES TO GO FROM THE SPINAL COLUMN OUT TO THE BODY IS GETTING CLOSED OFF BY THE "SPURS" OR "SARC CYSTS." ..I'm getting tired of that phrase, since I do not feel like that is what my problem really is -- and the idiot neuro insists on using that phrase) lIKE MOST, HE DOESN'T SEE BUT 1 OR 2 CASES OF NS, AND DOESN'T HAVE A CLUE-- WHICH IS WHY HE'S SENDING YOU TO U OF PA. (tHIS IS GOOD--HE' AT LEAST KNOWS HE'S IN OVER HIS HEAD.)