The Lupus Forum banner
1 - 2 of 2 Posts

· Registered
14 Posts
Discussion Starter · #1 ·
This is an old post I did about 5yrs. ago, that I knew would help so many who are newbies here lately...

Encouragement in your diagnosis journey

I've seen so many stories of bad appts. at rheumies, and your sadness & frustration with the appts. when a doc belittles what you're going thru or makes you think you it's nothing. So, it’s important that those of us much further along in the journey of diagnosis write out more of our own stories to show you it's very common to go thru some quack or jerk docs along the way. We can show you that there really are TRUE GEMS OF DOCS out there who will be very compassionate as well, when they see a true disease process(s). This is long, but will be very helpful to many. :) I feel sorry for any in the beginning of the journey of diagnosis, because I've been thru the long journey, as have so many here and it's not fun. In the beginning my docs all knew there were clear disease processes, but as with most people, I still did run into a few of those jerk docs over the yrs...those ones you only go to once.

So, let me encourage you with my story. This won't be about all the health stuff as much as the doctor journey to give you hope to carry on and believe in yourself. I know how much it helped me to know so many around the world were going thru similar. I want you to know what you're going thru is just a side step. Stand up, shake the dust off from any jerk doc, believe in yourself, and keep looking forward. You know your body better than anyone else. Remember, how much can a jerk doc in a short appt. know you? As others here have said so well, many of those rheumies etc., must be trained to just say off-the-cuff stuff when they don't know what’s wrong, because they can't let their pride admit they don't know.

I also feel sorry for those early in the journey, because that's when it's usually too early for blood tests to show anything up or not enough. Some abnormal tests/procedures may start showing up, and symptoms can be flaring up on & off, but the overall disease process isn’t clear yet. In my situation, some docs believed early on that I had an autoimmune disease w/all the separate health problems being diagnosed. But, besides my cardio. & gyn checkups, I rarely went to the doctor in the early years (unless things got severe), because docs couldn’t do anything w/o knowing the disease. So all I could do was wait. I just wanted to enjoy my life the best I could thru that time. I didn't want to hang out at Drs. offices when it was too early to know anyway. And a bad specialist would make me leerie of a 1st appt. w/someone new. My cardiologist was one of my greatest cheerleaders. He watched my health progress & became so adamant w/pep talks - that I can't give up getting a diagnosis, & that I needed to be more persistent w/docs since things were progressing much more. He was getting pretty frustrated that docs hadn't given firm diagnosis on the overall disease process yet.

BTW, I have met & read about so many women who were at 1st told it was just in their head or nothing was wrong, etc. But later they were diagnosed with things like Myasthenia Gravis, MS, kidney disease, diabetes, other autoimmune diseases, etc. Hearing those true stories tugs at your heart. When some docs don't KNOW the exact name of a disease, they can quickly throw out their catch phrases. They don't realize how it can tear down a woman's confidence, when already in a weaker condition dealing w/an unknown mystery disease hitting your body. And then it makes you look foolish to family & friends. And you sure don’t need that when already going thru a tough time. Those bad docs need to realize there's much better ways of handling things than denial. The doc’s or family’s denial can put the patient thru denial with health as well. That makes patients stay away from docs, when they need to be monitored the most at that time w/a disease building.

But, those docs can't swallow their pride and say, "Hey, it's clear you have a disease process, but I JUST DON'T KNOW THE NAME OF IT, and it may take years to know." That's the healthy, honest, compassionate response. Maybe actually there are some women that get way too nervous & sadly live in too much fear, and so overly consumed with health that they really need to think nothing is wrong...but I'M NOT ONE OF THEM, and neither are most women. I do way better facing things head on, understanding what's going on in my body. That's how I handle things best. I want to know, to research, to understand. That also makes it so I don't need to worry, but can face things as they come when I understand what it is I'm going thru. And I can't thank the Lord enough for being with me every step of the way, carrying me thru, giving me so much strength, encouragement, and even some needed humor in the face of trials. What a great blessing He's been to my family & I! \ J /

And along this journey, it's the most normal thing for any woman to want to know THE NAME(S) for the disease processes we're going thru. It would make it much easier if we're at the hospital or around friends and family..when people ask what's wrong. After all, there's only so many times you can say "IDONTKNOWITIS". :lol:

Docs have explained so well how in the early yrs. of many diseases, nothing usually shows up in the blood. It’s common that the SYMPTOMS come many years before tests ever show it, since our bodies are made to withstand so much. W/a disease process, it's also common to have blood tests go in & out of range over the yrs. So, as my docs explained well, it can be many yrs. to decades til it shows up enough in the blood to point to a SPECIFIC disease that would make it finally stick out from among the zillions of other diseases w/similar tests and symptoms. And sometimes you never get to know the name, even when the blood tests show up more and more, because there may not be a specific blood test to diagnose or exclude that certain disease.

I read an immunologist report online years back that said that while they always say it's best to be diagnosed early, that it's really the hardest thing to do. He said that sadly the MOST COMMON thing is that until some acute medical crisis happens in the patient's health, it's extremely hard to name that specific disease. He said that finally sets that disease apart from others when it shows its true colors. Many will never get to that point w/health at all.

I found so much comfort & encouragement from my docs & research & reading other's journeys. It all showed me that it can just take TIME. But, some may get lucky early on and happen to be at the docs right when one of those tests has gone out of range, or their disease is affecting something that shows up pretty quick. And amen to that early diagnosis. Anyway, with so many here going thru such a rough journey in the limboland of diagnosis, I just wanted you to not feel alone. It's common to feel frustrated at not knowing and all. But hang in there & realize many of us here can relate and understand the wait. That's why I wanted to be able to encourage you all that it can take time & patience.

It's all a catch-22 for the patient, tho. You want to know the NAME(S) for what you have, but it's usually way too early to know. It's really a waiting game. And there's those docs that like NOT to tell the patient, and try to get them to think nothing is wrong or it is just fatigue. (Of course in many patients' cases that may be true, but wasn't in mine & many others who have been finally diagnosed.) I was sent to a rheumy yrs. ago. While he was a smart doc, he was also a jerk. At the time, I could barely walk, in a lot of pain, with so many different symptoms, heart as well. He barely did anything and I barely got to say anything. But he had my list of diagnosis I already had by docs from tests & surgeries. I had lost so much weight and felt so sick that someone told me I looked like death warmed over.

Well, he comes right out and tells me I probably just had chronic fatigue. :eek:hno: I was furious, because with all I was going thru fatigue was NOT a main symptom of mine back then. I can't thank God enough for the strength He gave me to do something I needed to right then. I looked right at him & said I knew it wasn’t CFS. (Thankfully I had already looked up chronic fatigue, did the checklists for that & fibromyalgia, since I read that those are quick throwouts of docs these days). I said...1st off, to be diagnosed correctly with that, it says you CAN'T have ANY other health problems or BLOOD TESTS that show up any other cause for fatigue-which most diseases cause. It is a diagnosis of exclusion when nothing else shows up. So, that ruled that out right away. He got really (pride) mad right then, but he had hit my confidence & with 1 jerk doc appt. in past, I was NOT gonna let that happen again. And it's not fair to those who really do have CFS, where their condition IS disabling fatigue with no other abnormal tests or exams along the way.

Here's the cool turned out to be a blessing that he got so mad, and that I had researched before going!!! You'll love this! When he got mad, he finally admitted the truth that he was hoping he didn't have to tell me. Now, I knew in my case (not everyone's case)..the chronic fatigue label was just that-a throw out. I knew 2 people that had CFS and we all knew I didn't have that. I knew there was a lot more to what I was going thru, & couldn't imagine this Doc had no clue. I found out then, that some docs don't want to tell the truth, because THEY don't even like the truth. Check this out: He angrily says, you know what....YES, you're right, you don't have chronic fatigue syndrome. It's clear you have an autoimmune disease process, and I think you probably have 2 or more...but I don’t understand why women think they need to know what type it is!! It DOESN'T MATTER, because there IS NO CURE and nothing we can do to make it go away!! So, it doesn't matter at all to know WHAT NAME of disease(s) you have. :eek:

Wow! I don't think all docs would be so straightforward when confronted with the facts. Other patients may get an opposite reaction, and especially if the Docs really don't think the patient has anything. But, in my case w/my health, it showed me that he was purposely trying to make me think CFS even tho' he KNEW what I had was more serious than that. He then added that they also know that most women with autoimmune diseases will keep getting more autoimmune diseases..that that was most common. He settled down and wrote me script for Plaquenil. I took the paper, but was flustered at his whole treatment of me, so never went back. Never took the med because I didn't know it was for autoimmune stuff. Thankfully, I called AARDA that day! What a Godsend their great, encouraging support was to me! :thumbs:

My family doc (who said autoimmune disease as well), sent me to a new rheumy. By the time of rheumy's appt. my strength was starting to come back, and I was feeling better. At least I was finally going thru a very awesome plateau. PTL!! This rheumy was VERY NICE & VERY COMPASSIONATE!!! Had another positive ANA. He wanted me to come back in a few mths. for checkup, but I was feeling so good in that health plateau. After much prayer and all docs giving their ok, I got pregnant & had some of the best health I could ever imagine. It was GREAT!!! And what a true blessing my little ones are!!! \:)/Docs & my family & I know they are miracle children.

Well later when things were progressing again & we moved, I got copies of medical records. That last Rheumy's records said he believed autoimmune disease, just not the criteria for Lupus at the time. Wow! My regular specialists saw chronic diseases. God brought so much confidence my way from reading over their writeups, seeing how obvious things really were to my own regular docs..who are total GEMS. Their writeups were so caring & compassionate!!

But you know can STILL get a jerk doc along the way, even AFTER you're getting more & more blood tests pointing to answers. I had another jerk rheumy appt. later. Wild thing about that appt, was that he was at a top clinic. Shows the name doesn’t make them good. I told him about all the abdominal pain, (many weeks severe), lots of nauseau (VERY rare for me), lt. yellow eyes, and feeling so sick. I said it was hard to eat, having to eat little meals thru day, felt overly full even before trying to eat, bloating bigtime, periods changing, itching, etc. I had my hand on abdomen at appt., cuz I felt so yucky. I told him that my cardiologist wanted them to do blood tests at this appt. What did the doc do with all that? NOTHING...not one thing. :worried: He said I didn't need any tests either. He didn't even look at my medical history. I felt like he treated me like a number & insignificant. I think some people just don't get a clue or have much compassion til they've been thru getting hit w/a lot of health problems & all the symptoms back-to-back, too.

Well, check this out!! Talk about perfect timing! When I got home, God worked it all out. That very day, my blood tests came in the mail that had a note that said I needed to get to doc with these results. These were my annual preventative blood tests I got-thankfully or else I wouldn't ever have known why I was feeling so sick. There were SEVERAL abnormal tests marked out of range, and liver enzymes were several times out of HIGH range. Even tho' the numbers aren't good, at the same time I felt so vindicated, & it showed me that I was very right in believing in myself & trusting in the Lord that answers were coming. I knew my body's symptoms & what's not right with it better than anyone, & I was right. I called and talked with a nurse and she was absolutely furious that hubby & I had just got back from many hrs. of driving for that rheumie that DID NO TESTS even when I told him what I was going thru.

After she asked me tons of questions, she said those very symptoms & abnormal blood tests I've been having over the yrs. all pointed to liver disease. She was so mad that doctors would be so cruel by saying I didn't need any tests. She went on & on about that & how bad some men docs still treat women. Well in the end, the nurse said to get to my family doc quick.

My family doc was very relieved at my tests. She goes, “Please don't think this is weird, but I'm so glad that more tests are showing up, pointing to more answers. She said she KNOWS it's very vindicating the more answers show up. See, she understands -as many great GEMS of docs do, that patients going thru all this stuff, aren't going to docs cuz we want a disease, but because we just want a NAME for the disease(s) we're ALREADY going. We just want so much to understand what we’re going thru, so we can face it head on. So her words were very precious to me! God bless her! She understood without me having to say a thing. Wow!

She sent me to an awesome GEM intern med doc. He did the most thorough exams I've had, & asked lots of questions. Looked right at me and said, “You know what, I have something I need to tell you. You are not crazy, and NONE of this is in your head.” :D I had never said anything, but that showed that he must be used to women patients getting jerk docs w/the brush off. He said after thorough clinical exam & going over my med. history of tests results, & my progressing symptoms - that it was CLEAR AS DAY that I had at least 2 different disease processes affecting my whole body. He said since last ANA was sky high (1,280) after severe liver bout, it points most to connective tissue disease at that high. He said my exam looked exactly like MS as well (tho' autoimmune diseases can cause similar symptoms). After more tests, I was also diagnosed w/hypothyroid disease & given thyroid med. He wrote down connective tissue liver disease, too.

Anyway, with so many here going thru such a rough journey in the limboland of diagnosis, I just wanted you to not feel alone, and not feel so frustrated. But instead to see there are many who can relate and understand the wait. That's why I LOVE to be able to encourage you all that it just takes time & patience. I know how important that encouragement is-to know that this is a normal part of the process. I sure hope this gives you confidence to believe in yourself and go to the doc when needed.

Try to enjoy what you can when you can, and know the answers eventually come in time. Let yourself go thru the natural feelings you need to go thru. And remember, among some of those jerk docs, there ARE MANY GREAT GEM DOCS out there too! Keep looking up, and BELIEVE IN YOURSELF! And look for the silver linings in life. The following link is a great encouragement as well, that many really do understand the wait you're going thru. Hang in there!

God bless & heavenly hugs to ya,
heavenly :)

*I am not a medical professional, so this is only my own story. Make sure you have a great doc for your own situation & medical advice. This is just to offer encouragement & hope during the wait, to those with clear disease processes already going on where docs are already trying to pin down the NAME. :D
1 - 2 of 2 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.