So much misinformation here in some of these posts.
Integrative medicine is the term and now used instead of complementary or alternative being separate.
All it means is that when we used to label acupuncture as alternative, it was seen as an either or, western versus eastern.
Integrative just means that multiple modalities may be considered.
You need a good diagnostician, regardless of specialty. Specifically not a naturopath. Specifically an internal medicine specialist. A good one.
Really thanks for all the suggestions however I really have Doctors that would love to help me atest for everything and
. As far as disease suggestions all have been ruled out like Lyme, Celiac , MS. This is a medical mystery though I think that anyone who is ill and doesn’t have one of the 20 common diseases and doesn’t have cancer, with a MRI normal, Cat scan normal, is going to find themselves in my boat.
The suggestion for a Good Diagnostician is correct and that’s my question. How do you find one? I’ve seen the specialist ,they test and then they are done .
I so miss riding , caring for my horses, actually I don’t have a life even my friends have disappeared which I understand because I am so boring. Its just so hard to adjust and accept this and give up when there a chance that someone out there can help.
I have a close friend that went through something very similar. All the testing came back normal (Blood, neuro, scopes,etc.). She spent years being told she just had anxiety and having pills thrown at her. Then, she started going into anaphylactic shock all the time for mysterious reasons. They diagnosed her with everything, celiac, sjorns, graves, hashimotos, etc. because on and off she would have the symptoms of all of the above.
None of them explained the severe immune reactions completely so she kept digging and reaching out on forums in a similar manner as you are doing. Based on a suggestion from someone on a forum she got tested for Mast Cell disorder. Bingo. It can be hard to locate a doctor that can do the testing for it, but it might be worth exploring.
Have you seen a rheumatologist or a internal medicine specialist yet? I think that would likely be the next step if you have not seen a rheumatologist yet. Doctors are trained with the saying “When you hear hoofbeats think horses not zebras”, what they forget is that zebras do exist.
I experienced something similar and my Dr didn’t technically diagnose me but led me down the right path. I was having gastro issues, exhaustion issues, neuro issues and some autoimmune symptoms. ALL of my tests were normal but I felt like complete crap all the time. She had me try a strict paleo diet (basically fresh meat, veggies and fruit only) for one month and I did feel better. When testing and re-introducing foods I figured out I was allergic to corn. Google if it you’re curious it can cause a lot of weird symptoms. A diet test is hard but free and if it’s gluten or corn or something else I think it’s worth a shot. I didn’t have any typical allergy symptoms like hives or throat issues or normal stomach issues and on my blood test and not allergic to any foods. Allergy testing can be very unreliable.
I hope you figure something out I would try to find a Dr who wants to go on the journey with you even if it’s not easy. Mine was a nurse practitioner but she’s just special and likes hard cases and really listens and gives you her time.
Yes getting Mast cell testing done though its a long shot and so far testing is negative but many thanks for the suggestion.
Anyone know of any on-line support groups or web sites for the undiagnosed.?
Not a support group, just one more possible place to look for answers:
Never hurts to try, they like difficult cases.
I went to that site but did not find anywhere to post medical questions. Seems to be a support site for medical students
I see, they change their question tab, redirecting questions, not directly to a forum, as it used to be.
Sorry.
Have you looked at the Inspire Website? Not so much for a diagnoses, but for support and maybe ideas?
I finally found a doctor who was curious enough to order the right lab tests to start me on the way to a correct diagnosis. He was my ENT doctor, who is a DO. A DO fulfills all the requirements of an MD, and also has further training. What I apprecated was that he looked at me as a whole, and what was going on with my body.
When you go to a specialist MD, they are usually looking for signs and symptoms that fit with their specialty, or don’t. (“When all you have is a hammer, everything looks like a nail” type process.)
Two of the finest doctors I have had are DO’s. I think with both there is a sort of curiosity to figure out a complex puzzle, a trait that I also have about my health issues. (There HAS to be a reason why…) Both were aware of their limits and specialties, and made suggestions about who I should see to test/confirm the diagnosis they each suspcted. They knew what was beyond their specialty. As a result, I have a herd of specialists, all of whom know each other. That gives me a great deal of confidence in my care. When I tell one about seeing another and what treatment plan we started, it gives that specialist another point of data or info to consider in OUR treatment plan.
Being your own advocate, find and research legit websites and other sources, become educated about your signs and symptoms, and even considering the “zebra” conditions can all empower you. It also helps to have that background info to be able to speak with your chosen health care professional, to demonstrate the level of understanding you have. Keeping notes, listing questions to ask, keeping a symptom diary—-all can help in the search for the base cause. Don’t give up!
I agree the DOs have a much better approach than many MDs. I went to a DO as my primary care doc for 25 years. He definitely looked at me as an entire person (and as a component of my family and work relationships). The only reason I don’t see him now is that I live 1800 miles away. My husband and I got frustrated with finding decent care after the move, and incorporated medical visits into a trip back to Colorado. But that wasn’t a long term solution, so we have someone we both see in South Carolina. Too bad there were no osteopaths on my insurance anywhere nearby.
Rebecca
Food diary.
Functional medicine doctor (mine was on the board at the local hospital, and practiced internal medicine for 10 yrs before switching exclusively to FM)
Test SNP.
Given the cluster of body systems you mentioned, did the docs do a full assessment of your immune system? I was diagnosed with a Primary Immunodeficiency (specifically CVID)…all my issues were GI, and similar to autoimmune. It was actually the celiac testing that made me realize something was off (GI doc didn’t figure it out, but I am in the medical field and I did). There is typically a 7 year delay for a diagnosis…and it can include some pretty variable symptoms (not always infections). The IDF is a good place for info http://primaryimmune.org/ Feel free to PM me if you want to discuss more…PIDs include mast cell issues, and other allergic and inflammatory responses. Since you don’t mention specific symptoms it’s hard to say…but this is typically the last area doctors look into, and often takes a clinical immunologist to fully explore.
OP have they done any screens for heavy metal oxin,; for instance lead? Signs can be vague and chronic, digestive included
Had friend that was “sick” for a long time. Finally got a diagnosis of Cushings disease.
First, let me say I’m sorry you’re going through this. Don’t give up hope. Keep plugging along and looking for answers.
My diagnosis of Multiple Sclerosis (MS) took nearly 2 years. Along the way, I got various incorrect diagnoses - strokes, vasculitis, etc. It was a long road, and I was very ill for a long time. The meds I take now help to keep the MS in check, but not gone altogether. The damage already done to my brain can’t currently be “fixed”, and there is currently no cure, but I still have hope that someday there will be.
So my suggestion is to keep going to doctors, specialists, etc. until what they are saying makes sense. Be very thorough with them - don’t leave anything out. Keep a journal of symptoms/issues, when they started/stopped, what was going on at the time, etc. Keep asking questions and searching for answers. A diagnosis is out there for you.
Take care and good luck.
Thanks again for suggestions. I am shocked that MS should take to years to diagnosis, that’s really lousy medicine.
Scary part now is my legs proximal thighs are hurting even walking on the flat and yes have been tested for everything including genetic.
I watch House episodes sometimes and usually know the diagnosis because I’ve spent the last two years searching for an answer plus all that testing.
The episode last night the patient went on-line and offered 20K for a diagnosis . I thought that was my original idea but where do you post that?
I posted here because I’ve dead ended with specialist and my PCP (good man) is also at a loss.And I keep getting worse.
So COTH"ers WWYD? Luckily money is not the problem, also luckily no one has found a terminal illness so yes that’s good but Limbo and NOT being able to ride is making me very sad and unhappy and always exhausted . Its not Chronic Fatigue, grateful for that.
Thanks again
Hang in there and don’t give up! My diagnosis took many years (Addison’s Disease), but that’s because it manifested over many years. These things often don’t appear overnight. For example, Addison’s Disease can’t be diagnosed until 90% of the Adrenal Cortex has been destroyed, so it’s often a long, slow road.
I was able to get a dx only after diagnosing myself on the internet (doctors HATE that, especially if it’s a rare disease), and then I had to kick, scream and fire doctors until I found one to run the test. Then I fired her because she decided once we treated the Addison’s, I would be fine. I was not fine, as my thyroid needed to be treated differently once they treated the Adrenal insufficiency. I now have a fabulous doctor who works WITH me to manage my medical issues.
My advice to you: Document, document, document! Keep a file with every single test result, xray, and test so that hopefully a pattern can emerge.
Listen to your body! My doctors were telling me I would live forever because my blood pressure was so low, when in fact it was a sign my adrenals were failing. One of the ways I figured out what I had was borrowing a home blood pressure cuff and figuring out that I was Orthostatic; my BP fell when I stood up, a smoking gun for Addison’s Disease.
Keep track of ALL of your symptoms. For example, the muscle and leg pain I complained to my doctors about pre-dx? All signs of low cortisol. They tried to tell me I was just getting old. They can bite me; Now I’m virtually pain-free when I have my meds optimized (with NO pain meds, I rarely take NSAIDs any more).
Look for Facebook groups, forums, etc. I learned a vast amount on how to get my dx from an Addison’s Disease support forum, and then it gave me the valuable information I needed post-dx to manage my thyroid issues while dealing with Addisons.
Look at alternative therapies. I credit much of my success in finding good medical help to my acupuncturist. She was connected with medical professionals who think out of the box, and she led me to the fabulous GP I have today. Additionally, therapies like acupuncture might give you some temporary relief from your symptoms until you can get a diagnosis.
I wish you the best, and hope that you find the root cause of your issues sooner, rather than later.
Wow once again I am shocked how long it took you to get a diagnosis. I believe a accurate cortisol (3 hour) test should have shown your problem. That is not the simple blood test.
I really appreciate your comment and wish I knew how to use social media. I would offer a nice amount of money to someone who could get me a correct diagnosis.
As far as looking at on- line groups the problem is I can’t narrow down what’s wrong so there isn’t a group for " My body is falling apart, I’m stuck at home and no one knows what’s wrong with me". I’m trying to be funny but I can’t find any support group for the disease of “NO one has a clue”.
Very isolating as I have been though a couple of years of this and been tested for everything.
My Only negative results are low iron, low ferritin and slightly abnormal light chain ratio but no sign of cancer.
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