I have been posting on this site for a while and I really need to vent tonight. Feel free to stop here....this will be long and it is really for my own benifit. I need to get this out!!! It is long and rambling... I am just home and by myself tonight..big test tomorrow and alot more nervous than I care to admit to anyone else.
I have had a rough go of it for a while as some of you know... I have SLE, they said scleroderma diffuse. Overlap sydrome... whatever that means!!! lol.. They throw this drug at you and that one. You get better for a while, only to get worse again.... I have felt nuts!!!...... If I was only seeing one doctor or one specialist, that would be so different. But I have several...Each with their own thing/problem/diagnosis... they would not really even communicate and they pitch me back and forth between who would treat what!!! I would actually make them give me copies of each of their blood work and test results to take to each of them just to make sure they all had them. These are all with very prestigious teaching hospital. We are talking Baylor Medical University and UT Southwestern Medical University.... my new specialist assigned to my case ... Oncologist. I have had a swollen node issues several times. Several of them never went down. I have had this swelling above my colarbone for months. A feeling of pressure and something, well just there, hurting. Sometimes just there and sometimes I couldnt move. They checked my heart and there were problems there but nothing too bad. MVR and mild diastolic dysfuntion....come back in 6 months... My left arm is swelling and swelling... My left underarm, I have this Mass or thickness above my left knee, for MONTHS. They think it is related to the sclero... but to me, it feel like the tissue below and NOT the skin. All present and worsening steadily for the last 8 months. Starting now to include my right side as well. I have called it "Left" for months. I guess I will have to find another named now. They have done several cat scans but nothing picks up what is causing this. I have been on several rounds of antibiotics (for the ever growing number of swollen nodes in my throat and neck) I have felt like I have had tonsilitis and and ear infection for weeks. Dont even get me started on the fatigue!!!! lol... I know you guys know how bad that can be!!! I have felt like such a hyperchodriac!!! If it wasnt for the fact that they can actually measure and feel what I am talking about I would really think I was completely nuts. It is just that everything hurts so bad... Just not right. My BP has skyrocketed but they have gotten that under control along with my legs swelling up so bad thanks to 2 diuretic/BP meds per day!
Now they have referred me to the Sammons Cancer Center at Baylor and my new "ologist". I went to see him and he comes in. He looks so young!!! In talking to him, I realize he really isnt. He is in his mid thirties....His nurse practitioner examined me and then he also felt under my right arm at the oldest one. They say it feels like a 2. It has gotten "friends" in the last 2 weeks too. She asks about my thyroid.... I told her we have done the thyroid thing to death.. numerous tests... my thyroid is fine. I wish that was all it was.. Then I could take thyroid meds and get to feeling somewhat normal again. My DO that was scratching his head was the one that tested that 2 seperate times over a 4 week period. The oncologist said the risk is there so we are doing a lymphnode biopsy. They are doing the pet scan tomorrow. He said it is to see if there are any others and to see which would be easiest to remove. I am thinking, if they take out the node then they will be better able to type my autoimmune problem and get this under control better. Then this sinking feeling hits!!! I will be honest, I have a really bad feeling about this. I am going for my pet scan tomorrow. I have never really bought into the scleroderma thing... they have no labs to back it up. The only thing that has indicated it is, well.... the way it is thickening. I had a cat scan 2 weeks ago of my chest... It said some node swelling but my new internist says not too bad. He also said it was not very conclusive of anything. My neck is much worse though. I have surfed enough to know what they were looking for in my chest based on my symptoms though...SVC Syndrome...He didnt tell me that though..He did talk "around it". You know how they do that! The internist wants my rheumie to also run a full antibody panel with all of the bells and whistles too. Good plan!
I have gone to work through all of this...full time. I love my job and my employers and co workers. I have been terrified of losing that, my income, my INSURANCE. The last month has been hell though. It takes me 2 hours to get ready for work in the morning. But I can't lose my job. I am also so afraid that I will not be able to keep going if I dont push myself to do it. Meanwhile I have been to the dr atleast 8 times in the last month. I went to my rheumi on the 8th and cried for the first time. I begged him for help. I told him, I am really beyond caring WHAT the disease, problem or even treatment. Just get to the bottom of it all, pinpoint it, and find the right treatment. He looked me over and told me, well.... we have tried so much and while there is this auto-immune problem, this could also be cancer related. Why don't we go to an oncologist and rule it out.
I also went to a new internist, my DO just wasn't picking up the ball either . I kind of let him have it too... I told him I need help. My coming in every 10 days while I get steadily worse and them scratch their heads wont work. He has tried several antibiotics, and pulsed my steroids a few times to see if there was a change...nothing... everyday is a little worse in some way, new node or just feeling worse. During all of this I have gained weight, which is not a symptom of lymphoma so while it is comforting, it sucks too. I do have night sweats very badly and my estrogen level is normal and I am only 43. I have tried changing my meds...not taking pain relief meds after 6pm... many things.
I went to the GP yesterday. I have more nodes swelling. I had him run an EBV test just to see if maybe that was the problem. I mean we are talking about lymphoma, why not something more simple right?? Nope, it was negative. I showed him the two new ones I had and he said, maybe it is a muscle thickening and puts me on an Lamisil with the cipro and the steroids to see if that has an impact...Not so far. He said it would only take a couple of days to feel some difference. It is round hard and the size of a large pinto bean and you can actually see it sticking out of the front of my arm pit. That is not even the one they felt at the oncologists office last week, why because it was NOT there! How would that be a muscle?.... I just looked at him. They wonder why we get so mad, but sometimes it is like they want you to think you are crazy or paranoid. I actually made my sister (she worked at texas oncology for several years) feel it to make sure I wasnt imagining it. I mean you start doubting yourself after a while. Am I being paranoid? I have been so sick for the last few months. I have my share of health problems but this was so much worse than before and I have been screaming at them it seems like saying, please listen to me, there is something really really wrong here! Now that I have been referred to the oncologist, I go back and forth between complete and total fear to thinking again, I am still paranoid and relief that maybe they will actually get this figured out. My throat is so swollen it feels like I cant swallow and there is just so much pressure my ears hurt. I actually even considered I was just having a panic attack because it feels like it is going to close up completely, but they don't last for weeks do they? I have been telling them that there is something swelling in my chest for months. I can FEEL it!!!! It hurts every day and there is just so much pressure. Cat scan said nope...crazy right. Yet here I am 8 months later, still getting worse, new knots everywhere. 4 different antibiotics and even an anti-fungal (steroids make me susceptible) and it is still worse. The last few weeks have really gotten worse though. I have even tried to tell myself that this must be some mass infection that they are just not hitting with what they are trying, but that is really starting to sound nuts. My white count is not even that high... 12K can be from steroids too. I am just praying that I do not light the pet scan up like a christmas tree. I just want them to find out what the heck is going on and tell me what can be done for it. To KNOW why I feel so bad and that I am NOT crazy.
Just needed to vent!!! I have to wait till my appointment on friday with the oncologist for the results of the pet scan. They will schedule the lymph node biopsy after that. Please tell me that he will tell me on Friday if I "light up". I am really hoping not. They will do the biopsy anyway and atleast be able to tell me what is causing all of this. I am just praying that if they see something on the pet scan before the biopsy they will tell me and not hold back anything. I need to know!! With the number of nodes I have swollen, if it is lymphoma, they should know from the pet scan. If it is negative then it will have to be due to my autoimmune problems and they will then be able to treat that.
It is ironic, for months I have have been hoping for a test to show what is making me so sick. I was beyond caring what it was, just find out so I can get treatment and get better or know I am not losing my mind and have crossed over to some hyperchondriac hell!!! lol... This is the first test that I have taken that I am completely terrified will be positive. With the CAT scans I was hoping they would find something...not on this one!!!
sorry for the long post... I just really needed to get this out and I can't put this burden on my family. I know they are scared too in their own way.
Christmas was so weird. I know they were thinking about it. It was like the giant elephant in the room that everyone pretended didnt exist, except to joke about the no carbs or sugar and watch me go into Dr Pepper withdrawals....Lol..
The only comfort I could take was thinking that it couldn't move this fast. I thought it took months or years to move from site to site..not weeks or days. That is really the only thing I can think of anymore to make myself even hope this test will be negative.
I know most that post on here have already been through your own hell with all of the fears that go with that and can probably identify with this. This is the first day I have actually hoped maybe.... I am crazy afterall!!
Dear Erin, If, after reading your post, MY head is spinning, that's only a tiny reflection of how YOUR head must have felt as you wrote it. Rather than making foolish comments in an area about which I know nothing, instead I'll keep checking in, today, tomorrow, & however long it takes to see updates from you. Please know that I'm thinking of you & telegraphing positive thoughts your way. And I include hugs (lots of 'em.) Bye for now, until you post again. Always, Vee
Good Grief Erin, you certain have been run through the mill and back! I hope this new round of tests will lead to some firm answers for you, sometimes, I think just being left to wonder is the worst sort of agony, it prevents you from putting together a sort of game plan because you don't know what you are dealing with. As for the lymphnodes in your neck and chest and under your arms getting huge, I have had that for quite a while, also the tonsilitis/ear infection feeling, my rhuemy says that is caused by the nodes throughout the neck being "reactive" due to the lupus. I also have experienced the fullness above the collarbone, one day, being brave or maybe stupid, I pressed in really hard there on both sides at the same time, it made me feel pressure on my throat like I was being choked, and pain, and I puked as an almost instant reaction.....told the rhuemy about this and she said there were nodes there too, and the puking was probably from the pain I caused by pushing on them so hard As for the thickening, that is really strange,how it is underneath the skin. I have a friend who has SLE, Fibro, and Sarcoidosis who experienced the same sort of lymphnode stuff you are describing as well, she had a ct scan which showed her nodes under her arms/chest were very enlarged, she had a biopsy of one under her arm and the result was that it was enlarged due to the Lupus. When you mention chest fullness, that is something she had as well and that was found to be due to the sarcoidosis in her lungs, it didn't show on x-ray for whatever reason and was discovered by , I think it was called a bronchoscopy, where they put a tube like thing with a light on it down her throat and into her lungs and looked. I don't know if the sarcoidosis can cause thickening like you describe though. I might add that both she and I have normal thyroid function.
At any rate I am praying you get answers and relief soon, it stressed me out just reading what you have had to go through
Just did some searching about sarcoidosis on a powerful search engine,it CAN cause muscle thickening and masses! It is auto immune too. I copied a page but have no way to send it to you. I will say two words in my search were sarcoidosis and skin, even though your problem is muscle.......almost all of your symptoms are listed here I think. Please ask your Dr. to check for this as well if they haven't ruled it out......it isn't a common condition, but it does tend to overlap with other autoimmune conditions like Lupus.
I read about three nodular lupus-specific manifestations today, two of which I'd never heard of before. They are
1. Lupus profundus (panniculitis)
2. SCLE, nodular lump form. (Who knew?!)
3. Lupus mucinosis (one of 3 forms, the others being papules & plaques).
One of my pet peeves is that the mainstream U.S. sources focus on butterfly & discoid, touching upon other lupus-specific skin problems barely, if at all. I don't know whether any of the above are even possible, but at least worth mentioning. Thinking of you & watching for your updates, Vee
Thank you all for your replies. I did the pet today and go back on Friday so we will see what happens. They actually put the IV in my foot...that was a new one! I figure as bad as they are and widespread, if it is lymphoma they will know and tell me on Friday because the pet would be very active. I am taking my mom with me just in case. I just really have such a bad feeling in the pit of my stomach. I will feel much more less terrified if the pet is inconclusive or negative. Like I said it is so bad, if it isnt all lit up, I will figure it is autoimmune and not cancer. Then it will be the biopsy next and I am just praying they will be able to tell from that what this is so they can treat it. I don't expect a miracle or overnight healing, but what they have been doing has not had any impact at all and I am not sure how much longer I can keep pushing. I worked half a day today after the test, but it was so hard. I just feel so crappy and well let's face it, completely stressed out! I still have to get through the rest of the week.
I am just thankful they have not thrown the depressed card at me, because frankly I would be afraid of what would come flying out of my mouth at them!! lol... It is hard because I am so frustrated with them, but I also NEED them to help me and don't want to tick them off too bad. Just really emphasize that I am getting worse and they need to step it up a bit and get this nailed down. Boy is that a fine line to walk. My rheumi does get it since he has known me for 3 years now and knows that I am a fighter and will not go down easily. He does know when I say uncle, it is pretty bad. Which ofcourse is what sent him to refer me to the oncologist so fast.
Thank you for all of the research too... I will be telling them to check into the sarcodosis and anything else. I am really hoping that the biopsy will help atleast point them in the right direction. I am also going to make him run the full panel again.
My head was spinning a bit, and still twitching a little (just a joke). I am a little better today. It comes and goes you know!! lol...
I have to be honest, my biggest fear is they will just keep on and I will just drop. That is the honest to God's truth. When I say it, it sounds paranoid and crazy, but it is the way I feel. I am sure there are many on this board who have felt that way. At this point all I can hope is that they will figure it out and soon before I lose my job, patience and mind!!! lol
I will let you know what they tell me on Friday. BTW, don't you wish there was a real House!!!! That is what I need, a doctor that is not afraid of a puzzle and will solve it.
Just wanted to check in and let you know my pet was clean so whatever it is, it is NOT cancer. That was a big relief. I was really terrified it was. I have gotten so bad and nothing has been helping so it was pretty scary. I go back to my rheumi on the 8th and they are going to run the full panel again and hopefully order a muscle biopsy. Hopefully that will help them nail it down a bit more.
Erin, Whew! Yay! I'm REALLY happy for you that cancer has been ruled out. Actually, make that "REALLY, REALLY, REALLY". (Here please imagine sound of raucous cheering from afar, muted but heartfelt.) Keep us posted when you have time, OK? Hugs, Vee