Seeing doctor tomorrow, asking for gallium scan, and the monthly curse arrives

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redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 5/8/2007 8:41 PM (GMT -7)   
Finally got worked into the schedule at my pcp's office with his partner. Scheduled the visit so hubby can come with me to explain the situation in a loud voice if need be. I checked into the gallium scan and it can find infection and inflammation as well as cancers and lymph node problems. I figure the only other test they need is a CT scan I have had an MRI and many X-rays. I want answers. I also got information on where I need to go to get pain intervention. I get the doctor to fax a prescription for pain intervention for my right hip/leg and low back and they will do steroid injections and stuff to kill nerves that are damaged and causing pain for no good reason so long as I can function without them. I am so glad I spent 2 hours on the phone today making calls and insisting on getting answers to the questions I was asking. I also faxed 4 release of medical records papers out so my lawyer can update my file with Social Security prior to my hearing. I will ask for the notes from my last 3 or 4 visits to my pcp to be sent as well. I am definately going to insist on the gallium scan since this could be a lymph node problem or infection given the meds I take. I think it is reasonable. I am also going to ask for better pain management until this pain intervention clinic can help me. As hubby monitors how I use my meds for pain I have someone to make sure I don't abuse them. Heck I avoid them except when it gets bad like it has been. Then tonight the monthly curse arrived maybe explaining some of the pain increase of late. I mean our hormones affect our diseases. I am just so angry about how all this is being handled so far. I will call my rheumy again as today she was at the hospital for an emergancy. I need to get some info from her anyway. I decided I will take 20mg of prednisone tomorrow and the next day then 10mg the following 2 days. Then I will be out unless the pcp's partner decides to extend the script or my rheumy does. I know I am feeling somewhat less painful when I have the pain meds in my system now. When they wear off it is still horrible level 8-9 and my level 10 used to be natural labor then switched to total failure of the gallbladder with no medication to help compared to that labor is like 6 maybe 7. I would rather spend 3-4 weeks in labor than have to endure this much longer. I really hate how this feels. I wonder if a really high dose of prednisone short term would completely kick out the inflammation. No one will ever know most likely though as I will have to fight for all the treatment I do get.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD


cured4real?
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Date Joined Dec 2005
Total Posts : 1944
   Posted 5/8/2007 9:04 PM (GMT -7)   
Still going through the neck problem? I've had surgery and am starting up with a new similar problem, hoarse voice, trouble swallowing, pain, swelling, though I don't have any submandibular glands left, I have lymph nodes in the middle still and I'm hoping I don't have to have that out. I guess when the salivary glands go, they stop draining and swell. Its not like a stone in them, I've had that and its local sharp pain, but you know, the choking thing. I found an interesting article about benign hyperplasia of the lymph nodes of the neck being related to old head injuries, which I had. I was stabbed in the temple during a home invasion. It got very infected. Now years later I have problems. Anyway, in this case study, the guy shot himself in the temple with a nailgun and years later he was choking from swollen lymph nodes and had benign swelling due to crapped out lymph nodes from repeated infections that originally started with his injury. I think neck surgery probably causes the same things. I hope everything is ok with your neck and its not serious and I'm glad you are getting the scan, it does your whole body and they can catch other problems as well and other areas of inflammation. It also helped confirm the severity of my sjogrens for my doctors, my eyes were very bad. The pred shots really make my neck worse, I think that any little germ just takes hold and once I get a sore throat, it swells like crazy. Is this what you are experiencing? If you go to a good ENT (mine was also a plastic surgeon) my incision was very small compared to my old one and he was very good. He tried to clear it up with Penicillin first a really high dose like 1500, where most docs do 500. You need pain medicine or you may stop eating and taking your pills is really difficult. I had to write a letter explaining that since I have a 44x more likely chance of getting lymphoma due to sjogrens that they needed to rule this out completely. By giving my doc the letter, you can sue him if he doesn't do something. Putting it in writing helped. Also, I had to make sure I got my cat scan on a really good machine so it would show up. The gallium scan is the best way to prove. If both submandibulars are swollen, then they can't always tell, they compare one to the other. The only reason they kept saying mine was swollen was because I had already had one removed. The ENT guy was cool and gave me roxicet liquid since pills were hard to take and kept me on pain stuff till surgery then gave me something different after. Have you seen an ENT about this? Don't just let them look down your throat, make them do the scans, if the rheumie will order them, that's the best, then go in with the scans to the ENT and make sure they have some plastic surgery background so they don't scar you up bad. I'm glad to hear you are getting to the end of this problem. It took me 9 months to get to surgery, only two hours for the throat to swell up. Will pray for you that you get your scans and that you get this throat stuff taken care of. They need to know you have enough pain to live with and that they have to fix what they can. I hope all goes well with you. The surgery is relatively minor with a good ENT. If your ENT is dragging his feet, you need to find another, I had to. They do have to work around nerves and arteries and stuff and a good surgeon can do it very well, a bad one won't want to do it at all. (((hugs))) and I hope you feel better soon.
Marji

"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek--I'm not a trekkie but this one was funny!


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/9/2007 12:50 PM (GMT -7)   
Marj, actually I gave up with the throat as the evoxac fixed the problem. Now I am having hip issues and there is a lump that is hard in the hip/thigh/groin junction area and I know my lymph nodes are always slightly swollen down there and under my arms. I figure I may have an infection or something that the xrays and mris missed and I am fed up. I will get my galluim scan and my referral to pain intervention and then I will find a new pcp. I hate my current one and his partners.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/9/2007 4:22 PM (GMT -7)   
Hi redrose, I had that problem for years. When I first started losing pigment, it was in the groin, and the lymph nodes there were like marbles and sometimes I'd get like an abcess or something there where they would try to drain. Now, they are calcified and don't work. I was told it was due to chronic pelvic infections, like yeast infection type things and/or other infections in that region, UTIS whatever. I also had endometriosis and polycystic ovary. I must have some that still work because I light up in that area, but once they found my neck was benign and contained chronic inflammatory cells, they didn't bx the rest. I was told that I would have to see a general surgeon for them to be biopsied and a needle biopsy is generally going to come back inconclusive. I have decided to wait a while, I'm not having any other symptoms and the pain there is long gone from years of going untreated. I also have problems under the armpit, worse when I don't use gel antiperspirant, but sore and a lot lately and some of that has to do with my neck surgery (fusion plate 4 screws, foramenectomy). I think I always have some form of a throat infection going on and since I got dx for hashis I'm beginning to think my thyroid is messed up. I'm glad the evoxac helped your throat. It can also make the salivary glands swell though because it stimulates them, I had to cut back, but mine were shot anyway. I hate pcps for the most part unless they are really good internists, they just take your money and refer you out, if you are lucky. Otherwise, they do nothing. I'm glad you are gettnig the scan, I think everyone with auto immune disease should get one once in a while, that's what rich healthy people do as preventative medicine. I don't think we get rid of infections very well because we're on immunosuppressants, it seems like one turns into another, in another place. I wish the best for you (((hugs))) and will pray for you that you can get good results and that you get a good doc and can get some relief and that its not the bad thing. My throat is killing me again. I swear, it'll be the death of me. I have four big scars so far on my neck. I look like someone tried to cut my head off. Well, let us know what the scan says. One cheesy way I dealt with the lymph node pain was to soak in tub, put heating pad on it, put bengay or tigerbalm or something on it. Sometimes I had to rub gobs of bengay in there it hurt so bad, and it doesn't help much but better than nothing if you get in a pinch.
Marji

"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek--I'm not a trekkie but this one was funny!


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/10/2007 1:53 AM (GMT -7)   
Well, the pcp did nothing. She refused to even try and help or order any tests. The office policy is they don't prescribe pain meds and they don't order any tests beyond basic xrays, mris, or ultrasounds. So I will be calling my rheumy first thing and complaining like hell. I am gonna see if she will do all this for me. I couldn't even get the b^tch to give me a referal to pain intervention. She said that was up to my rheumy. She poked and proded until I was in tears and then said go to the ER or call my rheumy. Oooo like I am gonna go back to the ER after just having been there a few days ago. If I do that they will treat me like crap. I hate these people. I am finding a new PCP/internist office to work with if it kills me. I need someone who will actually help me. I can't go on like this. At least she could tell I am in agony and can't go on like this any longer. I need treatment. I need something done for this pain.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD

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