I'm kind of mucking around with various specialists right now; two (an immunologist and a cardiologist) have said I've got something systemic and autoimmune going on. Saw a rheumatologist, who looked at me for all of two minutes and said since I could still exercise there was nothing wrong with me (for the record, two years ago I was a marathoner qualified for Boston with loads of time to spare, now I have to walk all the hills on my daily slow jog because of muscle pain and fatigue - it may be "exercise" but it ain't the same!).
Anyone been through this diagnosis process before? Symptoms? How long did the merry-go-round of doctors take? This is getting pretty frustrating, and I'd just like to stop feeling like crap...
I haven't gone through this myself but it did happen to my mom. She had a lot of symptoms that she thought were unrelated but they ended up giving her a diagnosis of an auto-immune disease after about 6 months and MANY specialists.
FWIW it was actually a pretty rare disease. She was diagnosed with Systemic Scleroderma
Last edited by dani0303; Jan. 2, 2012 at 10:51 PM.
**Friend of bar.ka**
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I don't know if this is relevant for you or not, but I feel your pain - literally. I have ITP (idiopathic thromocytopenic purpura) which is an autoimmune disease that causes the body to destroy your platelets almost as fast as they are formed. I was diagnosed just over 5 years ago. Symptoms are random bruises (that you either can't remember getting or are much more severe than they should be), bloody nose that takes a long time to stop, fatigue, and in extreme cases (which I've had the pleasure of experiencing) petechia (look like freckles, but are tiny drops of blood under the skin). I was put on steroids right away by my family doctor to repress my immune system until someone could diagnose me. I got an appointment and was diagnosed by a hematologist in one visit (was within a week of initial blood test) after a blood test that was run under a scope...
Finding a treatment that works and allows you to live your life as you would normally can be a long and frustrating journey as well. Depending on severity, ITP does not allow for riding horses. I've been "cured" for just over a year after having my spleen cut out (which comes with its own challenges), but that was a last resort.
Some autoimmune conditions are tied genetically (my grandfathers sister had lupus, as does my cousin). I would ask questions of your family and see if anyone knows anything that might give you a lead!
I sympathize with your struggle. If you have any questions, feel free to PM me!
No advice, just sympathy. My dad was just diagnosed with a rare autoimmune disorder by his GP that has probably been plaguing him for years. He has had hand and foot numbness and a non-specific cough for years and no one ever investigated further. Finally he brought it up a few months at his annual physical and the GP did some extra bloodwork. The irritating kicker is the nurse handed my dad the lab work results with the Doc's diagnosis on it but didn't want to see him for a month. He had put dad on anti inflammatories to see if it helps, which is good, but didn't bother to tell my dad what it all means or what he should expect. My poor dad is sweating bullets reading scary stuff on the Internet. I have asked him to please go ahead and make an appointment with a specialist so he can ask lots of questions and develop a relationship with a doc who may have actually treated is before.
Sorry for the rant, and I hope your experience gets better. Good luck!
It took about 6 doctors and what seemed like endless rounds of testing for my dad's diagnosis (Lupus, manifests subcutaneously). He had to do a lot of research on his own to help solidify the diagnosis. As I recall, my grandmother's Myasthenia Gravis diagnosis was pretty quick once she got to a nuerologist. FWIW, I'm about 10 years into an autoimmune issue (thankfully dormant most of the time) for which the best explanation has been "Well, we think it's this, and all your symptoms match, but the biopsies aren't right soooo....no official diagnosis." Sigh.
Best of luck, and hang in there. Autoimmune stuff is damn tricky.
I have Fibromyalgia and exercise is one of THE MOST IMPORTANT things i can do for myself. I just can't over do it...like i did today. I have to ration my energy and the level of exercise or work i do or i end up in pain...like today. LOL
Find a better Rheum and see what happens. Good luck.
People take different roads seeking fulfillment and happiness. Just because they're not on your road doesn't mean they're lost.---Dalai Lama
Piaffe11 - I've got petechiae as well. They seem to appear on bad-joint pain days and then they're gone within a day or two. Maybe I shoud ask the next rheumatologist (since the first one was a jerk, I have an appointment with another in a few weeks) about a hematologist?
Read the book "Wheat Belly" by Dr. William Davis. An awful lot of odd fatigue and neurological problems seem tied to modern wheat in modern diets. I know that sounds farfetched at firsts but any autoimmune problem has a root cause and wheat is high on the list for many problems which are secondary to gluten intolerance/Celiac. Chronic Fatigue and Fibromyalgia are commonly found along with gluten sensitivity. You may have no gastrointestinal symptoms at all and still be reacting to gluten. Anyway, that's my suggestion FWIW.
[QUOTE=Piaffe11;6058225]I don't know if this is relevant for you or not, but I feel your pain - literally. I have ITP (idiopathic thromocytopenic purpura) which is an autoimmune disease that causes the body to destroy your platelets almost as fast as they are formed. I was diagnosed just over 5 years ago. Symptoms are random bruises (that you either can't remember getting or are much more severe than they should be), bloody nose that takes a long time to stop, fatigue, and in extreme cases (which I've had the pleasure of experiencing) petechia (look like freckles, but are tiny drops of blood under the skin). I was put on steroids right away by my family doctor to repress my immune system until someone could diagnose me. I got an appointment and was diagnosed by a hematologist in one visit (was within a week of initial blood test) after a blood test that was run under a scope...
Wow...totally random! I have/had ITP...thought I was the only one in the world. Thankfully I've been in remission for a few years, but after the exhaustive treatments I did (Prednisone, Splenectomy, Rituxin and Gamma-Globulin IvIG) my immune system got even weirder. My personal belief is that some auto-immune issues (especially those that are triggered by something, in my case it was a drug/medication reaction) will run there course naturally. Often the treatments make things worse in the long run...now I have a very weak and funky immune system and with Cancer on both sides of the family, I worry a lot...
I've got petechiae as well. They seem to appear on bad-joint pain days and then they're gone within a day or two. Maybe I shoud ask the next rheumatologist (since the first one was a jerk, I have an appointment with another in a few weeks) about a hematologist?
I would definitely talk to a hematologist. Is it out of your family doctors hands now? Could they get you in with one sooner than in a couple of weeks? It may be nothing, but it might be something and it's better to have your blood checked out. Petechiae (for ME at least) is a bad sign - if your blood is able to leave your veins (which is basically what petechiae is) - you need to be careful! With my condition, riding is out of the question at certain points when my platelet level is low (that is when my petechiae shows) so just make sure you are safe
Originally Posted by starlight
Wow...totally random! I have/had ITP...thought I was the only one in the world. Thankfully I've been in remission for a few years, but after the exhaustive treatments I did (Prednisone, Splenectomy, Rituxin and Gamma-Globulin IvIG) my immune system got even weirder. My personal belief is that some auto-immune issues (especially those that are triggered by something, in my case it was a drug/medication reaction) will run there course naturally. Often the treatments make things worse in the long run...now I have a very weak and funky immune system and with Cancer on both sides of the family, I worry a lot... E
I've never met/talked to anyone else with ITP! I never did Rituxin (doctor forbade it) but I was on the trial for NPlate... My immune systems running pretty well right now (which makes me feel like the splenectomy results will not last forever) and without treatment I'd be dead a couple of times over... My body (before the spleen dying a happy death) was unable to hold a single platelet. It's nice to know I'm not the only rider with ITP!
Last edited by Piaffe11; Jan. 2, 2012 at 09:36 PM.
Reason: starlight posting about also having ITP!
My merry-go-round took about 15 years and to some degree is still going on. What worked for me finally was to go to a holistic environmental doctor who listened to me and who was able to diagnose gluten intolerance - and most likely celiac but neither of us saw the point in the biopsy since the outcome is effectively the same.
Since I have had this going on for so long I have permanent damage including neurological damage. I also seem to have other autoimmune type symptoms that are as of yet undiagnosed.
It's a long road and you can definitely get beat up by the medical community but just keep searching until you find the right type of Doctor - and it may not be an immunologist or the type of Dr you might think you need.
Mine took about 2 years to get a diagnosis. I was even seen by the Mayo Clinic and told I was depressed. I ended up switching GP docs who finally got me in with a rheumatologist and was diagnosed. I have seronegative rheumatoid arthritis. Since I don't test positive for the rheumatoid factor on a blood test everyone dismissed the symptoms.
Thankfully my brother lives in the same area because he started having issues. He was able to see my rheumatologist and get diagnosed much quicker. Brother is also negative for the rheumatoid factor.
Good luck! It's very frustrating being dismissed by a doctor as "fine" when you are obviously not fine.
University of Minnesota College of Veterinary Medicine Class of 2012
Member of the Asthmatic Riders & "Someone Special To Me Serves In The Military" cliques
OK, I am the third one on this post with ITP! I was diagnosed 14 years ago; I was seeing a nutritionist becuase I'm a vegetarian and wanted to make sure I was doing it properly. The doctor ran some some routine bloodwork, and the nurse noticed that my platelets were really low (18,000). I had just thought I bruised very easily--never thought it could mean that I had a disease. The bruising and the petichiae were my only symptoms. Was sent to a hematologist, who diagnosed me with ITP (my second autoimmune disorder--first one was Grave's disease when I was 10). People with autoimmune disorders are more prone to other autoimmune diseases; hopefully, I'm done!
My first treatment was straight-up prednisone and it seemed to kick my immune system back into whack. That lasted about a year and then it came back with a vengeance. I was put on prednisone again, then added Danocrine and Whin-Ro, etc. Finally had my spleen out--that was almost 10 years ago and I've been completely fine ever since.
OP, YOU know your body best. If you feel something's wrong, keep searching until you find a good doctor who listens to you and will get to the bottom of your problems.
My body really started falling apart 4 years ago and I am just now getting some official diagnoses because *I* figured out what was wrong with the help of some very savvy people online and self referred to experts. The problem now is that I have so many "very rare" conditions that only the leading expert in each field seems to accept that it is possible. My PCP is supportive but has her moments where I am told to,stop trying to explain away all my symptoms. I should just accept I have a chronic congenital connective tissue disorder and it sucks. Problem is that I also have several,other things going on and a few others that have yet to be properly addressed because I haven't put myself in front of the right person yet.
It can, and often is, be a VERY long road to a correct diagnosis when an invisible illness is involved. The key for me was to write down ALL my symptoms, even if they didn't seem very important. I ended up with 3 pages at the time. Once it was on paper I was able to connect some dots, organize things, and start my own research.
Things to remember. YOU are the expert on your body. Nobody but you lives in it and knows what it feels like to be in there 24/7. A doctor is offering their OPINION, not a fact. So, if it doesn't seem right, get another opinion. I started getting answers about 6 months in but told my mom all along while she was still alive that I felt like those things were just symptoms. We were missing the underlying cause. We were just putting on band aids. I was right.
Be prepared to be called a hypochondriac, to be told you read too much, or to just eat better and exercise more. The worst one is this I think: You're fine. That's what doctors say instead of "I don't know.". Can't tell you how many times I've heard that. Be prepared to travel to see an expert. In the end it will cost you less than going to see every yahoo locally that will tell you you're fine. Bottom line: listen to your gut. I think doctors are easy to read, especially once you become a professional patient. The best doctor is not the one that knows the most per se, but the one willing to LISTEN and work with you. If you don't fit in to a nice neat diagnosis box a lot of docs seem to struggle at that point and that is when the few that are the cream of the crop rise to the top. Sometimes it is not at all who you expected either. I was shocked at first at some of the docs I had to fire/break up with.
Long answer I know, but I guess I wanted you to know it could take a while to really figure out what is going on. The key is to start assembling a medical team you trust. You decide who stays on the team and who gets cut. My docs, PT, and massage therapist know they are part of my team. I have cut some big wigs too and some never made it past their try outs.
Google "The Spoon Theory" too. It will help. If the board at But you don't look sick ever comes back up that is a great place to post too. Best of luck on your journey.
"You are a child of the universe, no less than the trees and the stars;
you have a right to be here." ~ Desiderata by Max Ehrmann
Oh, often overlooked and very under diagnosed... Check out the Mastocytosis videos posted by The Mastocytosis Society on YouTube. It can often present and look like lupus or autoimmune, even down to the malar rash. TMS also has a website if you google but they seem to be revamping it lately. There are many different forms of masto and it is probably much more common than most docs think and diagnose. If you want more info feel free to PM me. There is also some good info on www.prettyill.com
"You are a child of the universe, no less than the trees and the stars;
you have a right to be here." ~ Desiderata by Max Ehrmann
While not familar with yours I can feel your pain in the whole thing.
I had pain ( and sometimes still have ''break threw pain) in my fingers and feet. Had it for nearly 2 years until I couldnt take it any more and trotted off to the dr's.
One apt and 3 tubes of blood later I was dx'd with a form of ''non fatal'' cancer what ever the heck that really means and that tag is from the lukeimia and lymphomia foundation... And perpherial(sp) neuropothy.
Fast fowrad 2 yrs I not only have the one form but 2 forms of that non fatal cancer for which I will be on drugs o control for the rest of my life. but a new neurologists was suspisious of the neuropothy dx' so she orders a whole slew of tests including all the ''heavy metals'' testing. Something came back weird as later this month I go to a rhumetologists...
I will trade with anyone who wants to have a strange but exciting life in my body...
Thanks y'all. It's nice (okay, not nice) to know that I'm not the only one feeling like a crazy person when I go to all of these doctors! Some have taken me seriously, some not - I've got photographs of my petichiae and malar rash since they seem to come and go, and I'm not heading into my appointment with the next rheumatologist without them, since it will be my luck to have a "good day" that day!