I don’t know where to start, please be patient and bear with me. I'm a 38 yr old male.
Since I was young I've had several "mystery illnesses" that I've never really gotten a diagnosis. When I was 4 or 5 I was admitted into the hospital for several days with the only symptom of a 105 degree fever, which just went away and they couldn't say why or what was wrong. At 12 yrs old I went for a year running fevers and not "feeling right", my father was in the air force and they medivaced me from fla. To Mississippi for 2 weeks again no explanation but they did put me on a drug called INH for a year, because they thought I had been exposed to tb. In college I felt like my health changed dramatically. I ended up in the hospital near death on the critical list for 7 days, and then I just got better and the doctors couldn't explain how or why I was so sick. The only reason I was admitted in the first place was the docs said "I just didn’t look right". Within the next year I became extremely tired, loss of concentration, and memory loss, and depression. I've always had aches & pain on and off. I've been tested from everything from cancer to mono, allergies, you name it and everything in between and finally if that’s not frustrating enough when the doctors don’t have answers, some cop out with saying "ITS JUST IN MY HEAD". In 1996 I was working overtime and noticed my hands were swelling and my joints would hurt me awfully. So much so that between the pain and the swelling I couldn’t grasp things, with both hands I could barely turn a door handle to open it.
In '94 I was diagnosed with 5 herniated disc and since then I've had 3 back surgeries. In 2000 I became disabled due to the back problems, with back surgeries in 2000 and 2001. I live with back pain everyday both upper and lower back. Any symptoms I've had since these last surgeries are always blamed on my back which I can totally understand. I have chest pain at times - it’s been ruled out as not being a heart trouble so docs say it’s due to my back. I get tingling and pins and needles in my hands and finger tips at times as well as in my feet and lower legs. My knees swell and hurt a lot. I know that the back can cause these symptoms. I feel though that there’s more to it than that and I beginning to wonder about some other symptoms.
Here’s why; I start having these bouts where I would get totally exhausted and would have to take naps - sometimes just getting up and getting ready for the day would do this. Some days it’s just difficult to get out of bed. I would feel like I was just lazy-but I felt there was more to it. I would get sick for days often which I thought was just due to having overdone with my back. Some of these bouts were feeling like I had the flu, without the throwing up and diarrhea. about 3 years ago one day I noticed visible blood in my urine. I had things checked with a urologist (sp) and they confirmed I had blood in my urine, but could not figure out why. Every urine test since then has had blood and protein in it. I started having frequent headaches with no explanation. Then for the last year in a half I starting running low grade fevers. Then last march I developed a nickel size sore on my leg. It turned into an ulcer that was deep and odd looking. It lasted until in June it finally healed, until a week later I developed another one about an inch in a half away from where the other one was. I live in the north and was sure it was not due to an insect bite. I went to the emergency room when this one had a swelling around it the diameter of an orange and was purple and scaly looking. The er doc looked at it and he couldn’t do anything with it that it was Pyoderma gangrenosum and I needed to contact my gp for blood work. My gp did some blood work and found that some things were elevated so he sent me to a rheumatologist. She did more blood work and ruled out rheumatoid arthritis. I apologized for not knowing the blood work result, but there were like 7 specific things the blood work tested for. I had 5 of the seven things, but the 2 things that would clinch a lupus diagnosis, I didn’t show. She was able to make a diagnosis of MCTD and said she was leaning more towards lupus. Oh and by the way, my paternal grandmother had lupus.
With some of these flare ups I get so sick. It’s like the worst flu you've ever had with fever and chills, ache and pains, dizziness, without the throwing up and other stuff. I feel like the time I was in college in the hospital. I feel like I'm gonna die, then after awhile of it I want to die. Is this common with mctd/lupus? I called the rheumatologist. They had me come in but I saw her PA she told me that I shouldn’t be that sick with a flare-up and that I was barking up the wrong tree. That it was some else causing this. She continued to basically tell me that I didn’t have this and I should start looking elsewhere. The thing is, is she basically contradicted the rheumatologist in a lot of the things she said. Like for instance the rheumatologist said it could take a long period of time to get a full diagnosis, where as she told me that if I had lupus or something in this area that they would be able to make a diagnosis right away. Its cut and dry I either have it or I don’t, that’s when she said I was barking up the wrong tree. My wife and I sat there blown away. We've been so upset over this, no one wants to have a dieses, but we felt the doc was on the right track; it made so much sense and answered a lot of questions. Now this PA tells us we have to start over from square one.
What do you guys think, am I on the right track? Is it just the PA's inexperience? or should I start looking other places? Is it common to have some flare ups that feel like the worst flu ever and that your gonna die?
I know it’s a long read but I felt I needed to give my history of what’s gone on- sorry.
Hi Red - Just wanted to say welcome and tell you I share some parts of your story. I hope you get some answers. I also have had (for many years) the fevers and symptoms like flu w/o vomiting/diarrhea that just end up "going away" and nobody knows from whence they came. My white cell count is low during these bouts - then bounces back to normal within a month or so. Usually liver enzymes are elevated at the same time and then return to normal. CRP is also elev. at those times. I have an elevated ANA all the time, and all the muscle/joint pain issues, along with rash/sensitivity to sun, brain fog, fatigue, yada yada. But since none of the other blood tests come back positive (RA, Anti DNA, and names I don't remember) I am in diagnosis limbo as well.
I've been on the Plaquenil for 3 mos and I do feel it has helped somewhat - especially with the "down and out" fatigue I was having before starting it - and I am hopeful to see further improvement as time goes on. I also have herniated disc problems - in fact, the more intense symptoms that told me something else was going on other than fibromyalgia, started after the disc problems began. You mentioned chest pain. I had palpitations and near fainting spells while going through the rehab for my back - that led to a heart cath that showed everything was fine, which was great news, but I know how frustrating this ends up being - especially when you are told your problems are in your head (which just happened to me for the first time).
I just want you to know you are not alone - you will find lots of help and support here. I hope your doctor visit goes well this afternoon!
Hey Red! Just wanted to welcome you to the forum...Everyone here has helped me so much and I know they will give you some great advice! I know it is frusterating having to go through all of this and I really pray you will get the answers you are looking for soon! Hope you stick around and let us get to know you better!
21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08
Thank you to all!! I can not tell you how comforting it is to talk to others who are in the same boat!! The posts were such an encouragement to my wife and I, it gave us such a feeling of relief that we have someone on our side. We have felt like we have been in a battle all by ourselves and now we have allies!! It is nice to have positive reinforcement behind us!
We went to see the rheumatologist yesterday and Jenny was right I should have not gone back to see her, I was able to see the Dr. and not the p.a., but it wasn't much better. I am not one to complain and I have a high tolerance for pain so when I say I feel a certain way, it is without exaggeration. I have flair ups where I am so sick that I truly feel like I am going to die, not from depression, but from feeling so horrible. I have no quality of life. The Dr. told me that she doesn't have any patients in her practice that are as sick as I am, and once she told me that, she started printing out my blood work reports, she was done with me, she gave up and referred me to another dr. So once again, no answers. We were blown away and angry. I guess it is just as well. She felt that the results of my blood work are too 'mild' to feel this sick. Whether or not she sees other people this sick or not, I feel this way, and I think she needs to deal with how I feel and try to help me find answers. She said that all she could really do was to put me on chemo-therapy or another type of toxic drug. She got an attitude and really had no time for me. As a result of the way she acted yesterday I really don't want to see her again anyway. So, the new doc is quite a travel for us, he has a closer office, about an hour away and we can't get in till May 15. I am seeing a kidney specialist in about two weeks to address the protein and blood in the urine.
My wife tells me that I am only supposed to take one day at a time so that is what I will do. The good news is that I had a great day yesterday as far as how I felt, after the dr. we made it a family day and ate out and did things with the kids, it felt so good to get out and enjoy myself!
Hi Red - Sorry you didn't have a good response from the doctor. At least you are moving on, and already have scheduled with another doctor. As so many people here say, sometimes it takes a few tries before you get a "good" one. I'm glad you are seeing a kidney specialist - I think some of your symptoms could be coming from that direction. Your wife sounds wonderful - glad she's in your corner, and you were at least able to enjoy your day yesterday.
Hang in there -
Red, I have never heard a doctor tell anyone they were too sick to have lupus? That makes no sense to me, as lupus can make you very sick. And I think you're bloodwork adequately justifies a dx of an AI disease. It sounds almost as if your rheumatologist did not have a great deal of experience working with the autoimmue diseases (not all of them do), and simply wanted to pass you on. Keep trying and you'll find a great doctor. For what it's worth, I think it's obvious that something is definitely going on with you. Hope you feel better soon.