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Old 07-09-2008, 10:41 PM   #1
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Help!Lupus,Fibro,Heart SVT,IBS,Kidney&LiverProb,DDD,OA&more

Sorry it is LONG!
I fell at work on Jan 5, 2005 & had to wait 4 mths before my first knee surg. Had to go through shots, meds, rehab first. I found out on my first MRI, I have claustrophobia. 6 mths before my other knee surg. I not only put holes in both knees & tore both knees menisc, but I also found out I had grade 4 OA & malalign in both knees. I didn't have a good knee to lean on for the other knee to get better. After 2nd knee surgery I hemorrhaged inside knee & had to go to Dr. to get a needle inserted in incision & pull out as much blood as they could! Admitted 1 week later for DVT. SO much pain! Put on dilaudid & slept finally! {Dr. wanted to do TKRís on both knees W/C denied it because all wasnít done in my fall.} During this time I was in so much pain. More I think than I have ever been, for longer than I have ever been.
(W/C started backing out of everything. Denying I got hurt at work at all.) Major stress. My husbands insurance wouldnít pay for anything because it was work related.) Right after I fell I started having low back pain down leg. During a shower, my right knee went out on me & I fell HARD on the side of the tub. I had a huge deep hematoma on my total left butt cheek & down my whole left thigh. It took 3 mths to go away & traveled down my whole leg. More tests.
I found out from a Neurosurgeon I had two hern discs in my lumbar region. I went through months of rehab & steroid injections to no avail. I was term. from my job. Depression started. During all of this I was going through so much stress trying to get W/C. Had to go to several of their Drs. & their tests (Depos, delayed court dates.) Anxiety started.
Started having severe pain in abdomen. More tests. I found out I had 15 gallstnes & had to have it out. I went to knee & back rehab the day after surg with a drainage bag! To me this was so minute to what I had already been through. During rehab on my knees & back I got ITBS in my right knee. It is still there today if I do anything to aggravate it. Couldnít do rehab anymore.
Started having severe pain in neck, shoulder, arm. Numbness in arm & hand. Loss of strength in hand. More tests. Had carpal tunnel syndrome in both wrists & I had a herniated disc in my neck & it was serious. It was causing irreparable nerve damage in my left arm & hand. Tried shots, said it wouldnít hurt but he hit a nerve! SEVERE streaming pain for 2 minutes! Did this twice & it didnít work. I went through mths of having steroid inject. in both my knees, back & neck. None of them helped. Had all the tests again DDD in my total spine. Neurosurgeon said I had to get neck done before back. It was more serious. Fibromyalgia started.
Right before my neck surgery I go by Ambulance to ER with heart rate of 215 twice in two weeks. More tests by Electro cardiologist? Canít remember what he was, but he was the only one in my State! Before Neurosurgeon would do my neck surgery he said I had to have Cardiologist release me from heart problems first. This was a lot of stress! Dr. said I had SVT & had to have some extra cells on the inside of my heart removed, because they were making my heart fire too much. After many tests (More claustro!) He went in through my groin & neck with a wire & camera & burned off the extra cells. Itís called a cardiac ablation. He said it was a classic text book case of SVT.
Then I had a neck fusion with a cadaver bone & wore a brace for 6 weeks. Then I got a temporary Spinal Chord Stimulator put in for lumbar pain. Wore battery on outside & had one wire placed inside my thoracic spinal column on outpatient basis. Worked for 3 days & then slipped in column & put both legs to sleep! Had to have permanent SCS put in with special features. My Pain Management Dr. & My Neurosurgeon both had to go in & surgically cut my bones in back & place three wires that were laminated in to spinal column so it wouldnít move again. Then they cut a big incision on my hip to place battery inside of my body. This was so painful to recover from & it did help some of the pain in my legs & butt but not my low back. Nothing will I guess.
I had to have Carpal tunnel surgery by Neurosurgeon after recovering from neck. It was pretty bad he said. It was a pretty easy surgery to get over, I thought. Nothing like the rest I had been through! Then I started noticing I couldnít swallow! More tests & Radiologist wrote at the end of the report in the discussion he saw only a small hiatal hernia & proof of gerd. Itís the end of 2007 now & my husbands insurance changed effective 1/1/2008, as well as all my Drs. & Hospital too!
Went to new PCP on 1/3/2008 with all my records from all my Drs. (12) & took them to my new PCP. I read them & before I gave him a copy I noticed the radiologist, who did my throat scan, wrote a note that he saw a 1cm nodule on the side of my thyroid. But he didnít write it in the discussion at the bottom of the report which is all the Drs. usually read. I mentioned it to my new PCP & he felt my thyroid & sent me for more tests!
New PCP wasnít going to prescribe me the Duragesic 50 Patch or my Zanaflex 4mcg; I was on, because he said he didnít like to prescribe that. I called my old Dr. (I had been with him for 7 years so he knew I was no drug addict. Actually I hated pain killers. After all of this I am now allergic to about 12 different meds of which are HBP meds, antibiotics, & pain meds.) My old PCP called my new PCP & explained what all I had been through & he started all my meds immediately.
Tests showed my thyroid to be covered with nodules. More blood tests. (I should be out of blood by now!) I was DXíed with Hypothyroidism 2/2008. Put on Synthroid to destroy my thyroid so nodules would go away. Still trying to get it regulated.
Sent to a Rheumatologist because of blood work in February. DXíed with Lupus SLE 3/2008, ovarian cyst & kidney stones 4/2008. Did a 24hr. urine test & found protein in urine again. Being sent to a Nephrologist on 7/29). Tests also showed high liver enzymes. More tests. Hasnít told me about liver yet for sure other than it is inflamed.
SO from Jan. 2005-current I have had 5 joint surgeries, 3 organ surgeries, DXíed with Lupus SLE, DDD total spine, OA grade IV (both knees), Fibromyalgia, Claustrophobia, high blood pressure, hiatal hernia, gerd, depression, anxiety disorder, agoraphobia, hypothyroidism, Breast Fibroids (2 Ĺ hour mammo so they could get pictures of all of them & they are so tender, I cried the whole time), Heart Ablation, Kidney & Gallbladder stones, thyroid nodules, colon polyp removal (I wake up screaming when colonoscopy is done because I have such a sensitive colon.) I wonder if this has to do with the Fibromyalgia), ovarian cyst, Kidney & Liver inflamm., depression, anxiety, MVP, Spinal Chord Stimulator, Cervical fusion with metal & cadaver bone inserted, waiting for age 55 to get TKR's unless they come up with an alternative before then. PLEASE!
Also:I have hemorrhaged 3 times in my lifetime. When I was 12 years old I had a T&A & did. When I was 22 I hemorrhaged after I had my daughter. I hemorrhaged after my second knee surgery. I guess you could say I hemorrhaged when I fell in shower too. But I fell hard! My blood tests show I have a high platelet count though. Wonder why? My son is 22 & still has nosebleeds everyday. Even after having 3 sinus surgeries. Mine bleeds all the time also. Whatís with that? I donít think I want to know so I am not bringing it up! LOL
Am I doomed to getting more problems & to keep go down hill? Has anyone else had similar circumstances? Is Lupus causing all this? Why is so much happening??? I'm only 47 yrs. old & only saw a Dr. once or twice a year before all of this. My life has changed so dramatically. Sit in chair with legs up or sleep continuously. Duragesic Patch & Plaquenil are helping but this is no life. My poor husband & kids. My mind is screwed up also. Any help is appreciated!
__________________
2005-current 5 joint surg, 3 organ surg, Lupus SLE, DDD, OA grade IV, Fibro, Hypoth, Breast Fibroids, Heart Ablation, Kid & Gallbl. stones, thyroid nodules, colon polyps, ovarian cyst, Kid and Liv dmg

 
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Old 07-10-2008, 03:52 AM   #2
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Re: Help!Lupus,Fibro,Heart SVT,IBS,Kidney&LiverProb,DDD,OA&more

Hi, it's Vee again.

High platelet counts: I've read this can happen "simply" due to chronic inflammation. Have you ever been tested for antiphospholipid syndrome (APS)? FYI, I don't mean to scare you! I have no idea whether what you described is even in the ballpark of APS---only that it can't hurt to ask.

You mention a "T&A" when you were 12. I don't know what that stands for?

Gallbladder problems are more common in people with lupus, per Dr. Wallace (I think). So is hypothyroidism. Whether in your case these were *caused* by lupus, I obviously couldn't say, but it makes one wonder, doesn't it?

Claustrophobia, agoraphobia, etc.: I've read that people with lupus can experience such things. I sure did, years before I was Dx'ed: rapid heartbeat, sweating, dizziness, etc., ALWAYS in the most inconvenient places (riding on subway, driving across bridges, etc.) Post-Dx, it all stopped. Also, I wonder if your thyroid issues can contribute?

Maybe like a lot of us, it will turn out that some of your past problems *could* have been lupus-related but that no one will ever be able to say for sure. So the main thing is probably to get thru what you have NOW, meaning (for starters)
(1) see the nephrologist.
(2) Ask rheumie for copies of labs, etc. on which your lupus Dx was based & start keeping your own personal file.
(3) Ask whether you've been tested for APS.

I hope others chip in with other thoughts soon. Hang tough! Vee

 
Old 07-10-2008, 04:49 AM   #3
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Location: Owasso, Ok, USA
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empressofq13 HB User
Re: Help!Lupus,Fibro,Heart SVT,IBS,Kidney&LiverProb,DDD,OA&more

Hi Vee. A T&A is a Tonsilectomy and Adenoidectomy. Sorry about that. Also I looked at what tests I have and I have not been tested for APS.

I am trying to be patient waiting for my appointment on the 29th for the Nephrologist. I get pretty bad headaches and was told I cannot take any Advil, Acetamenophine, Aspirin etc. until I go see him. Thanks for reading my long post again and for your comments.

I am slowly but surely getting my questions answered!
__________________
2005-current 5 joint surg, 3 organ surg, Lupus SLE, DDD, OA grade IV, Fibro, Hypoth, Breast Fibroids, Heart Ablation, Kid & Gallbl. stones, thyroid nodules, colon polyps, ovarian cyst, Kid and Liv dmg

 
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