WWYD can't get a diagnosis

[walkers60]

I haven’t been able to ride or do much at all for almost a year now , I so miss riding . I’m posting with the hope that someone might have been in the same boat. My body is a mess yet all testing is normal and I have had lots of test . Luckily I have not had the “its in your head” reaction from physicians and some would really love to solve this mystery.

     I have been rejected by Mayo, Cleveland clinic because I don't have a "speciality"in other words my symptoms are all over  GI/neuro/ dermatological /sjorgrens like/immune stuff ...
 There really isn't a diagnostic clinic that looks at your whole body (that I could find) so i go to a specialist, they run thier tests ,say sorry and on to the next. I have run out of ideas , I miss my life and my horses. 

I’m not asking for a suggested diagnosis but more a" What would you do". I don’t do Social Media ,know nothing about it but would offer a Nice Reward if anyone could help me find an answer.
Being undiagnosed is a special nightmare, if you give up then life is over and there is always a story out about someone like me finding the “right” doctor who just happens to know what it is.
Its like being stuck half way down a well, do I let go or keep trying to climb out?

[arabiansrock]

try to find a specialist in Integrated Medicine. They look at the entire body as a whole, and also think outside of the box. They consider everything when looking at you, diet, allergies, lifestyle, stress, auto immune, etc. Good luck to you!

[Jackie_Cochran]

Keep on trying.

It took about 37 or so years, from the first MS attack I remember to finally getting diagnosed.

It took around 18 months from the time my whole left leg became numb until diagnosis.

What got my primary care physician to move me on to effective diagnosis was when I asked him for a referral to a chiropractor since, the primary care doctors could never find anything wrong with me, no matter what symptoms I had. THAT acted like waving a red flag in front of a bull, he sent me to a first specialist and that office sent me to a neurologist, I had an MRI and I found out what was wrong with me, Multiple sclerosis, after 37 years of getting clean bills of health from family doctors when I had repeated UTIs, bladder problems, increasing exhaustion, and when I started falling for no reason.

You have my sympathy. There are a lot of people around that find it can take years, even decades, to get a correct diagnosis.

If I had not asked for a referral to a chiropractor I probably would still not be diagnosed for the 35 years since my leg went numb.

I did it with the attitude of “gee, you regular doctors can’t find anything, maybe someone from out in left field can find out what is wrong with me.”

Hey, it got my doctor moving so I finally got a diagnosis.

[Color_of_Light]

Keep trying to climb out. I know personally how it can feel like you’re on a treadmill going nowhere, but eventually you will reach your goal f you keep trying. You have my full sympathy and understanding. I’ve been there.

Forget specialists. Integrative Medicine or Naturopaths will look at the whole person, but I’ve only worked with Naturopaths. They were the only ones who made any traction with me getting a diagnosis and treatment. I’d seen many specialists in the years leading up to my first ND. Even after an MD order the tests I requested and I had a diagnosis, he said I was fine and that to just wait and see. After that I saw a few more specialists and they said they doubted my diagnosis. Yes, I had to go through a few ND’s to find one that was the right one for me. Every single one that I saw was focused on the whole person, not just the symptoms.

I suspect that all of your tests are not normal. They just haven’t ran the right tests yet (very common), have not ran complete tests for various diseases (very common) or you are borderline and someone is overlooking that test result (again, very common). Without knowing specifics, if you have those types of symptoms associated with the diseases you mentioned, it could very well be autoimmune. A certain one comes to mind. Another complicated piece of this is that tests can be negative before becoming positive or you could be seronegative.

[Guyot]

I too am undiagnosed after years of dealing with on and off facial paralysis, weakened immune system and a host of other symptoms.

The doctors have nothing for me nor do their drugs help or dissipate the pain.

I have the most success with my homeopath; she doesn’t diagnose me but she does support my bodily systems and target various symptoms. By utilizing her support and adjusting all my foods (as much as possible) to organics (including soap and hair dye) I have had a wonderfully more productive last two years.

While finding a diagnosis would be wonderful I’m super fine with just feeling much better then I used to. OP I wish the same or better for you.

[Jackie_Cochran]

If you find a homeopathic doctor, they consider ALL your symptoms as valid, they build up a “symptom picture” which they match with a homeopathic remedy. This can get as nitty-gritty as what time of day you are worse, exactly what type of pain you have (like cutting, tearing, pounding etc.), how you sleep, if you are better at the sea-side or in the mountains, what type of weather triggers stuff and your family medical history (back to grand-parents or possibly great grand-parents) among other things. With a good homeopathic doctor there is nothing that is considered an “invalid” symptom.

The homeopath may never be able to diagnose what your disease is exactly, but when they select the correct remedy the difference can be amazing, and long lasting.

My first appointment with the homeopath lasted 2 hours. If the doctor cannot find a total match for a remedy they will give you the one that matches your individual symptoms the most and go on from there.

I ran out of money (I was also getting my kids treated) before he found the correct remedy. I then studied the homeopathic Materia Medica, looked up the MS entry in the Repertory, tried to match my symptoms to the suggested remedies, failed, started to read the entries for individual remedies. That is how I found two remedies that have helped me derail several “normal” attacks and help ease some of the deterioration with catastrophic attacks (from estrogen replacement therapy, and some unexpected deep shocks). Since I started with these remedies I have had to see my neurologist a lot less.

One great thing about the remedies is that you do not take it daily forever. Usually I first do one drop (or pill), and if improvement stops I take another drop (or pill.) Then I may not need to take that particular remedy for years. I do not end up with all the horrible side effects of regular drugs either.

However I have not cured my Multiple sclerosis, but then regular doctors cannot cure MS either so I have not lost anything. ALL the new MS drugs made me much, much, much worse.

Since I started using homeopathic remedies, combination remedies for normal colds, flu, stomach upset etc., my husband and I have to go to the doctor a lot less frequently, right now my primary care physician likes to see me once a year so I just do the physical exam that my insurance will pay for. My doctors know I do homeopathy though regular doctors do not know enough to prescribe a homeopathic remedy.

Except for my MS I tend to be quite healthy now.

[WhiteOakFarm]

Find a functional med doctor, ifm.org

My functional med doc has given me my life back. Also by the way, I was accepted at the Mayo ten years ago with many of the same vague symptoms, GI, skin disorders, and turns out I had undiagnosed celiacs.

[Fillabeana]

GI, neuro, and dermatological symptoms are hallmarks of Celiac disease.
Especially if you also have autoimmune problems.

Lot of MDs are not very well educated about how Celiac can present. Nor are they well educated about testing.

Lot of people ‘try gluten free’ but are not anywhere near stringent enough to stop an immune reaction, if they do have Celiac disease.

And then after going gluten free…if it does dramatically help, you find out that in order to get an accurate diagnosis (by blood antibody and endoscopy) you have to be currently eating gluten.

And then hardly anybody realizes that if you are taking steroids or other meds that shut down your immune system…y yo might test negative for celiac antibodies anyway, even if you do have Celiac disease.

PM me if you want more info.

[MustangSavvy]

Being undiagnosed is awful and frustrating. It took me a long time to get properly diagnosed and I still struggle with doctors. I had all signs of EDS and POTS, yet everyone failed to put the pieces together. It was blamed on growing pains, etc.

My best advice is to keep trying and to continue to push. I think a lot of us struggle with chronic illness have gone through this incredibly frustrating period of time.

[SLedbetter]

Don’t have any advice here, but my family is dealing with ‘undiagnosed’ issues that have gone on for years. I understand your frustration. Got a lot of good suggestions from people on this forum. Keep trying, I think a homeopathic doctor is a good idea.

[imaginique]

@arabiansrock

try to find a specialist in Integrated Medicine. They look at the entire body as a whole, and also think outside of the box. They consider everything when looking at you, diet, allergies, lifestyle, stress, auto immune, etc. Good luck to you!

This was going to be my suggestion also. I have a friend who has had a variety of health problems for years and an integrated medicine doctor has been the only one to give her a diagnosis.

[Bluey]

Just a warning, many of those “drs” are not really doctors, but one more snake oil salesman:

https://www.skeptic.com/reading_room…cine-is-bogus/

—“Then came “complementary and alternative medicine” (CAM), and later, “integrative medicine.” Now there’s a new kid on the block, “functional medicine” (FM) which is really just the latest flavor of integrative medicine. These are all marketing terms, Trojan horses designed to sneak non-science-based medicine into conventional medical practice. The oft-quoted quip is appropriate here: [I]Do you know what you call alternative medicine with evidence? Medicine.”—[/I]

[Jackie_Cochran]

There are homeopathic doctors that have their regular MD degrees from the normal, recognized medical schools. They are not common nowadays, but they do exist.

My grandmother was a doctor, MD. I have her degree from 1907, it is for homeopathic medicine from a real medical school (University of Michigan). At that time the principles of homeopathy was among the cutting edge of medicine. She learned all the medical stuff, surgery, the current allopathic pharmacopeia, and how to be a physician, and she seamlessly went into allopathic or regular medicine as research created valid treatments like inoculations, vitamins and hormones.

Now the regular MDs have to make homeopathy a specialty, and they usually have to go to the remaining homeopathic medical societies to get additional medical training on how to prescribe and use the homeopathic remedies.

I have read in the homeopathic literature of how the homeopathic doctors get patients now because regular medicine has failed these patients, often after years of fruitless searching for help.

[imaginique]

@Bluey

Just a warning, many of those “drs” are not really doctors, but one more snake oil salesman:

https://www.skeptic.com/reading_room…cine-is-bogus/

—“Then came “complementary and alternative medicine” (CAM), and later, “integrative medicine.” Now there’s a new kid on the block, “functional medicine” (FM) which is really just the latest flavor of integrative medicine. These are all marketing terms, Trojan horses designed to sneak non-science-based medicine into conventional medical practice. The oft-quoted quip is appropriate here: [I]Do you know what you call alternative medicine with evidence? Medicine.”—[/I]

An integrated medicine doctor is an MD with knowledge of natural medicines.

That being said, I’ve given some more consideration to your situation and here’s what I’d do, having dealt with undiagnosed autoimmune diseases in the past. I have great respect for Cleveland Clinic and I’m sure Mayo is good too. I would call or go on the web site and open a chat and describe you most serious symptoms, such as the GI symptoms, and once you get an appointment you can discuss the other symptoms with your doctor. Or ask for appointments with both a Gastroenterologist and a neurologist or rheumatologist. You should have appts in a few days and they usually do lab/blood work on the same day. (CC that is. Never been to Mayo) Of course any other tests will have to be scheduled. I see no reason why they would not take you as a patient. If you get a foot in the door for at least one doctor you will probably need to see others, or a GE could diagnose all of the symptoms as celiac or other GI problem. Hope you have success finding you problem. I know what it’s like to not know what’s going on and how great it feels to finally get a diagnosis and put a name to those symptoms and be able to do something about it.

[Magicboy]

I don’t know anything about homeopathy but I do see an MD who practices integrative medicine and was trained by Andrew Weil in Arizona. I admire Weil greatly. I think this type of doc would be helpful in getting a diagnosis

[Bluey]

@Jackie Cochran

There are homeopathic doctors that have their regular MD degrees from the normal, recognized medical schools. They are not common nowadays, but they do exist.

My grandmother was a doctor, MD. I have her degree from 1907, it is for homeopathic medicine from a real medical school (University of Michigan). At that time the principles of homeopathy was among the cutting edge of medicine. She learned all the medical stuff, surgery, the current allopathic pharmacopeia, and how to be a physician, and she seamlessly went into allopathic or regular medicine as research created valid treatments like inoculations, vitamins and hormones.

Now the regular MDs have to make homeopathy a specialty, and they usually have to go to the remaining homeopathic medical societies to get additional medical training on how to prescribe and use the homeopathic remedies.

I have read in the homeopathic literature of how the homeopathic doctors get patients now because regular medicine has failed these patients, often after years of fruitless searching for help.

When it comes to knowledge and medicine itself?

Not sure I would compare 100+ years ago to today.

What has always worked up to a point is the placebo effect, important to any practice of medicine.
Where that gives relief, why not run with it.

When it comes to effective medicine in itself, I would be careful who I choose to see to our needs, that’s all.

The OP here seem to be looking for a real world diagnosis of what may be ailing her.
For that I would say, today’s standard medicine may fit better than going the fortune teller type glass ball readings as diagnosis.
Which is what alternative medicine is.
Or it would be standard medicine today.

Remember, standard medicine is not static but changes as knowledge advances.
It depends on what can be demonstrated and measured and reproduced as precedents for their standards, called data.

Unlike alternative medicine, that basically uses anecdotal evidence, why it is not accepted as standard medicine.

[WhiteOakFarm]

@Bluey

Just a warning, many of those “drs” are not really doctors, but one more snake oil salesman:

https://www.skeptic.com/reading_room…cine-is-bogus/

—“Then came “complementary and alternative medicine” (CAM), and later, “integrative medicine.” Now there’s a new kid on the block, “functional medicine” (FM) which is really just the latest flavor of integrative medicine. These are all marketing terms, Trojan horses designed to sneak non-science-based medicine into conventional medical practice. The oft-quoted quip is appropriate here: [I]Do you know what you call alternative medicine with evidence? Medicine.”—[/I]

My functional medicine doctor is an M.D., before labeling all things you don’t know as quackery, become informed.

[Bluey]

@WhiteOakFarm

My functional medicine doctor is an M.D., before labeling all things you don’t know as quackery, become informed.

MD only means someone studied standard medicine and passed the necessary requirements for that title.

That doesn’t necessarily indicates what kinds of medicine it chooses to practice or promote.
Good example of that you may find at any time in many TV infomercials.

[arabiansrock]

Bluey my daughter saw an integrated medicine doctor, MD, and she NEVER recommended anything for her that was other than standard medicine. What she DID do, was consider disorders that the other doctors did not consider. Unfortunately she was also unable to diagnose my DD, but that was partially DD’s fault because she did not go back for her last bloodwork and follow up exam.

[CHT]

I feel your pain and understand your frustrations.

It can be hit or miss with doctors unfortunately, and sometimes you just luck out with timing (for example if they just read or learned something helpful to you, or are having a good/bad day).

I have had some success just focusing on dealing with symptoms rather than worrying about a diagnosis. My GI doctor has been the best, but it helped that I was clear about being open to lifestyle changes (diet), rather than just wanting a fix.

Another help has been to go to a teaching clinic. The interns may have fresher knowledge and be more keen, and the appointments tend to be longer, so you can cover more.