Taking a break, need more surgery, frustrated with oncologist crap

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 4/22/2009 11:22 PM (GMT -7)   
Hi-
Well I stopped in to see how you are all doing. I haven't reallyfelt well enough to be online. The pinched nerve in my back has gotten bad enough that it is very painful to walk or sit upfor any length of time and I'm having trouble lifing my toes and feel like somethin is stuck between my big toe and the next one. the leg is swelling bad too.
 
My stupid pet scan at Mayo was all screwed up, done an hour late after half the tracer was gone. Despte the negative testthey predicted, Ihad uptake inthe armpits and buttocks. Still Mayo is not pursuing anything,not even suggesting a biopsies, though my family doc is thinking maybe in a while, after I get my back surgery, its something to look at.  Mayo tried to tell me I had recent injections in my buttocks, which I hadnt, not for years now, since I've been getting pill tapers. Anyway, they don't believe me and attribute the uptake in the lymph nodes there to be due to "injections", which is rubbish. UNfortunately this is where I have alot of pain. Thearmpits were a surprise, though they have been sore and swollen for years now.  The big nodes in my neck, one which s pressing on my jugular vein off and on and causing a lot of dizziness and strokelike feeling andalso affecting my hearing in that ear off and on, did not have uptake, they blame sjogrens, but those nodes have been bad for so long they are likely calcified. I don't know that they could really show much uptake.
 
The oncologist at mayo said their cutoff for lymphoma was uptake of 2.3 and mine was 2.1. I tried to explain that my PET scan was not done properly, they did not get me back in time for the right amount of contrast to be in me, so wouldn't it be higher? I'm really disgusted. I told my doc here that all Mayo did was run up a big bill, and she said that's what most people say. I was really impressed wth the liver transplant guys, and I liked my physical therapy guy, but the rest were pretty awful. If I do have lymphoma, its likely the slow growing, indolent lymphoma, since I've been having problems for so long. There are so many places to biopsy, its a problem too. I do think I have a right to know if I have cancer, since I've been so tired and my white cells up.  All they say is that I don't look sick. It would be good to know because I could maybe switch to a biologic that would help with the autoimmune disease and possible lymphoma problem too.
 
It so hard having sjogrens and then this kind of stuff. some of the lymph nodes n the neck they reallyhave trouble getting out, like the one on my jugular vein. IF it gets worse, I don't know what I'll do. Complications of swollen lymph nodes you don't think of.
 
I hope you are alldoing okay and I wish you all the very best.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


LovedbyHim
Regular Member


Date Joined Mar 2009
Total Posts : 98
   Posted 4/23/2009 4:52 AM (GMT -7)   
Hi Marji, wow what an awful experience. mad Sheesh! How do we trust when things like this happen? I'm so sorry. Please know my heart is heavy for you. I don't have nearly the issues you have, and yet, have been feeling pretty sorry for myself as I grieve the loss of who I used to be.  For the last two months I have had back spasms pincing a nerve that goes down my arm. It drives me NUTS! The lyrica seems to be working to take the edge off. I hope and pray you will find a way to deal with the mess you are in. Blessings Tammy 

I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
 
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
 
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 4/23/2009 7:32 PM (GMT -7)   
Thanks for your kind reply, Tammy. I can't take lyrica, I'm allergic. B6 helps me alot. I'm finding that some of the problems seem to be nutritional, my body just doesn't metabolize vitamins, or they are missing from the food. B6 has been a blessing. I'm sorry to hear about the pinched nerve in your arm along with every thing else. I hope it resolves itself. I went through that with my neck and finally got surgery, it was really bad. My arthritis is one of the worst problems with my disease, my spine is a mess.

Well, a nurse (ironically, at Mayo) told me, "well, if you do have cancer, think of the lawsuit you will have." My family is burned out and so am I. I will get the surgery on my back to get out of pain, and then maybe I can make better decisions about what to do on the other. I plan to write a letter to Mayos chief of staff letting them know about how I continually fell through the cracks. At least my new local doc is good now, so that solves a myriad of problems. I'm just worn out and my brain not working so good sometimes, but I'm glad for what I have and will just have to deal with what comes next. Thank you so much for the support, it means alot.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 4/24/2009 12:17 PM (GMT -7)   
I'm sorry you're having such a hard time right now. I hope the back surgery relieves the pain. God Bless you, Judy

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 4/24/2009 4:04 PM (GMT -7)   
Hey Marji...they really are putting you through a lot! I really hope you can get some relief soon! So sorry you are going through all this! Remember, we are here for you!

Amy

 

21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 4/24/2009 9:03 PM (GMT -7)   
Thanks Amy and Judy, just the same old same old, spine and lymph nodes. I've had positive Rheumatoid Factor and my grandfather hadit and mymom may have it and has "microscopic colitis". But the right joints aren't affected, I guess RA doesn't affect the spine and my hands and knees dont swell way up and turn red and hot. They just hurt, someimes a little heat, and not enogh damage. If this is all sjogren's its pretty doggone severe! I hope you are all doing okay. I miss you all and do pray for everyone here even when I'm away. I just feel complainy and trying to keep to myself, but thought that my experience at MAyo may help someone else going through this stuff, since we all have that risk.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 4/24/2009 9:44 PM (GMT -7)   
Marji
It's good to hear from you, I'm sorry you are having so much trouble,I hope the surgey goes well and relieves the pain. I didn't no sjogrens cause all them problems. I hope next time you are on HW. you will be feeling much better. Praying for ya. Take Care.
Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 4/24/2009 10:21 PM (GMT -7)   
Thanks Debbie. YEah, I didn't know sjogrens could be this severe, but I've seen some pictures of people with it severe and they had a lot of neck swelling. Sometimes I think the docs use it as an excuse for everything. They just don't seem to have any other answers. Thanks so much for the prayers and support. I hope you are doing okay now. Its so hard, never knowing what's going to break tomorrow, always a new surprise. Well, it was good to hear from you too and I'm getting more strength up. Good wishes and prayers to you too!
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/25/2009 11:51 AM (GMT -7)   
I have RA and my spine is affected- I take ENBREL BECAUSE of my spine otherwise I would be on methotrexate or something similar. My rheumy said RA doesn't affect the spine but my spine responded to RA treatment. Wish I could offer more. Your local doctor needs to look into the possibility of cancer now rather than later, my aunt is dying because she delayed a test and found out too late.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 4/26/2009 11:18 PM (GMT -7)   
Thanks Redrose, my neighbor just died from cancer in the spine and it seems to be more common here, we live near a mine and a dump, so that can't be too good. I need to get a second opinion. I was afraid to get surgery on my lower back because I thought there might be some in the spine, but I found out the PET scan they did wouldn't show it. My stepmom had non-secreting myeloma and they sent her home once telling her there was no cancer but she got a second opinion and Moffitt found it. Whatever it is, it is slow growing, so that is good, they said if all the spots on my 3 yr old gallium scan were agressive cancer I'd be dead by now, so thats why they think its not agressive cancer, butthere is indolent cancer that is really slow growing and they just don't even want to address it. Like if I'm not dying, they'd rather have me not think about it, just keep having mysterious problems with no diagnosis or treatment. I will ask about RA stuff. The were looking at Rituxan a while ago, which they also use for lymphoma, so maybe that's something to bring up again. Hope you aredoing okay. I think like, with the Enbrel working on your spine, the odds of it working are not large, and somehow that always seems to get translated into it doesn't work at all. Its like bloodwork, so many docs base everything on it, but there are the people who just don't show up with positive bloodwork for AI disease. It's funnyhow they change their tune once you ask them why everything on your body is breaking, or you have posible cancer dx on scans. All the sudden you have severe AI disease, when before they were telling you you had nothing wrong.

I'm so sick of docs. I just hope my neurosurgeon is good. I just can't bear memorial in savannah again, it was pure torture. I will be in a smaller local hospital and hopefully will get home sooner and also get better treatment there in the ilttle hospital.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 4/27/2009 1:19 AM (GMT -7)   
I think we are all sick of doctors. I will keep you in prayer Marji. You hang in there and keep telling us what happens.
 
Smurfy Shadow
 
Desirèe 
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis
 
Medications:  Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D, Pro-Air, Pepcid, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops
 
PRN: Epi-Pen, Albuterol Nebulizer, Benedryl
 
Undergoing Radiation
 
Taking Lorazepam (Ativan) on Radiation Days


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 4/27/2009 6:41 AM (GMT -7)   
Marji, I'm sorry about your lousy experience. Doctors don't often realize how much these things impact our lives and sometimes their schedules create havoc. I hope you get some answers soon.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/27/2009 12:56 PM (GMT -7)   
I wish doctors would listen more often. I have negative blood work as in all my labs are normal yet I have neurological involvement with my lupus and look at my dx list if you want some laughs. I nearly died because my labs were negative. I got lucky with my rheumy since she has seen ana neg lupus more than most doctors- she gets all the patients who are sick of being told they are nuts when things like pluersy and pericarditis keep happening along with other criteria. She could see how ill I was on my first visit. Having pictures helped. I say they need to find out if you have cancer now. Even slow growing cancer eventually kills. My aunt is dying of cancer as I write this. I hate cancer it has taken so many of my family members. It has taken so many of my friends. I wish they would find a cure already. Kind of like with lupus the treatments are often worse than the disease itself. I hope your surgery goes well. I may have to give in and have surgery myself, I have a bulging disk and another that is deteriorating. Enbrel helps with inflammation of any kind so if your spinal issue is inflammation it will help.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 4/28/2009 10:18 PM (GMT -7)   
Thank you Pat Desiree and Redrose. I should be able to think more clearly once my leg works right again. I think having a slow metabolism due to venous problems, bad circulation, kidney liver, thyroid whatever effects the quality of our bloodwork. This is not a medical opinion mind you, please know that, but it is the only way I can explain having ok bloodwork and bad problems. My thyroid is a great example. It's clear it doesn't work, and my temp rises and symptoms go away when it is treated, but my TSH is only ever very very mildly out of whack. Same with adrenals and pituitary, though the physical symptoms are evident. Also, they can see the damage to my thyroid on scans, etc. WHo knows. Maybe my blood sits in my legs so long it breaks down, who knows. There must be some explanation, I have searched the web and can't find any. Yeah, cancer is lousy and I gotta go back to the GI soon for the regular "scope" and he will probably freak out again, because of that polyp he removed and the swollen lymph nodes in my butt. Well, its on him. Nothing came up in the intestines for lymphoma,so that should be good. There is just too much. Take care redrose and I hope you don't have to go under the knife again too, unless you have to. I pray for you all too.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 08, 2016 5:09 PM (GMT -7)
There are a total of 2,735,034 posts in 301,268 threads.
View Active Threads


Who's Online
This forum has 151368 registered members. Please welcome our newest member, Martinese.
376 Guest(s), 12 Registered Member(s) are currently online.  Details
Thankuall, Bololidat, Laker7491, THE HAPPY TURTLE, mikeb2308, Sarebear89, LG13, Huddie, ChickenArise, sam12, Blu's Mama, Mister Mike


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer