Cleveland or Mayo would not typically “reject” someone because they don’t have a particular diagnosis. What you need is an Internist and probably a double new patient appointment so you and he/she have time to really talk and review in detail the testing and diagnostics you’ve had done so far. Ideally records arrive a week or more before you do so there is time to look them over. I know you are just venting here but terms like “my body is falling apart” don’t really help. Clarity is so important along with precision in describing things. Do you have a time line of symptoms, tests, and progression of things?
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Test for parasites?
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Deltawave: Hospital like Mayo ,Cleveland Clinic do reject pts. especially those who don’t know what speciality they need . They rejected me though Cleveland said I could come but “don’t expect any help as they had reviewed all my testing and had no ideas”. my Doctor did send records , electronic records with all the test data and findings. “My body is falling apart” is accurate as I have problems in so many systems and really thats not uncommon (trying not to take offense)
Mayo has changed and rejects lots of pts. now, they really don’t do global diagnostics. If you reads some of their case studies you’ll see the findings are pretty uncomplicated. at least i usually guess the diagnosis. I suppose many pts. go there from areas that don’t have access to good Hospitals.
Sansena
Yes I have been tested for parasites .However I like to spread the word that the best and sometimes only way to diagnosis parasites is with camera endoscopy. My friend lost 30 pounds and went though so may test especially for cancer but they also did fecals which were negative. I was sure he was dying but the camera showed Hookworms. Hookworms no one has any clue how the got them but I was so happy to learn it was not a fatal illness as he was wasting away.
Hopeless…
Thanks again everyone I really think you guys are wonderful.
When I finally got my diagnosis there was only one recognized mainline medical therapy, corticosteroids for exacerbations.
I was helped by having my diagnosis in finding alternative therapies, but part of the reason was that I was just so darn tired (working full time, horses, long commute) that I just did not have the energy or time to figure stuff out myself.
Based on my symptoms, what I had read of others with MS, concentrating on herbs that were proven to cross the blood-brain barrier and/or that addressed other health symptoms I had, and through reading A LOT of books on medicinal herbs, I came up with an herbal therapy that I still do 25 years later.
The herbs that helped my MS: Bilberry (eyes), Ginkgo biloba (memory. strengthening the blood-brain barrier), Milk Thistle (energy, good for the liver), Hawthorn Berry (good for the heart), Astragalus (energy, lungs), CoQ10 (energy), Magnesium Oxide (muscle cramps), Ginger root (digestion), and recently I added Ashwagandha which has REALLY helped my energy level this long, dark winter.
Many herbs now come in “fortified” form, where enough extract of that herb is added to the ground herb so that there is a guaranteed level of the bio-active molecules. These preparations cost more, but in herbs they are the nearest thing there is for standardization for medical benefit.
These are the herbs/mineral that helped me. I listed them to give you a possible place to start. I tried many, many herbs and there were other ones that helped somewhat, but when my income dropped when I was put on disability these were the herbs I kept buying because they did help me cope with my disease.
You have a BIG challenge trying to treat yourself without a diagnosis. One helpful thing about herbs is that many of them have been used for hundreds and thousands of years, therefore there is an excellent chance that they will not hurt you (unless you are allergic to that herb.)
May you get a valid diagnosis soon. Until then the best thing you can do is to eat healthy, exercise as much as possible, and learn the herbs/minerals/vitamins etc., that can help you deal with your health problems.
The herbs did not help as much as the homeopathy, especially for active exacerbations. The herbs are to improve how one feels daily, homeopathy is a different level of medicine for emergencies and dire duress.
Good luck!
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I feel your pain, I have acute intermittent porphyria. Average time to diagnosis is 10 years. My symptoms started in middle School and I was diagnosed at 40. It’s not really intermittent. It’s a simmering low level weirdness that flares into crisis. Thankfully I have it mostly under control because I know what I have and what kicks into high gear. Before the diagnosis I knew some things made me sick but I didn’t know why and could not manage it.
On top of porphyria, I have gluten intolerance ( gives me polyarthritis and horrible acne) and hashimotos thyroiditis. There was no test that said I had gluten issues. It was found by accident when I was on an oceanographic research cruise and the galley was shutdown for 3 days while we rode out a hurricane. I was taking a gram of aspirin every 4 hours for the joint pain, and it went way when all I had to eat was soda.
My rheumatologist said " oh, you have a food sensitivity" but had never once suggested that food could cause my problems. I was one step away from a handicapped parking pass and was soooooo tired, all the time. It was horrible. Less than a week into an allergy diet, I was back to normal. Finally figured out it was gluten. Huge change in my life.
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@walkers60 I’m so sorry you’re going through this! But you can see by the anecdotes people are posting, these things are not always obvious when you’re in the midst of them, it can take a long, long time to sort it all out, and some of us got diagnosed due to sheer luck. A few years back I was talking to a co-worker of my husband’s at a party, and she was curious about my medical alert bracelet so I told her about Addison’s Disease. She had been in and out of the ER for YEARS, and had felt poorly for many more. Even though her symptoms were somewhat different from mine, I thought they were close enough that she should be tested for AD. A week or so later, I found myself coaching her through yet another crisis that put her back in the ER, and gave I her a bunch of tests to INSIST on while she was there. She ended up being diagnosed with Addison’s Disease as well, shocking considering there are probably around 12,000 of us in the U.S. (it’s considered a rare disease). Had we not talked at that party, who knows how long it would have taken her to get diagnosed properly?
I know it’s hard when you’re feeling poorly, but don’t give up! Keep talking to people and searching for answers, and I hope you get your diagnosis soon!
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@walkers60 why not share your symptoms here? There are many of us here that have a rare diagnoses (mine is 1 in about 25-50,000 people worldwide)…and many of us have been in a similar situation of docs telling us they have no idea what is wrong. I work in healthcare (not a doc, but have a clinical doctorate and research based doctoral degree) and love a diagnostic challenge (no, not asking for money…I just love the satisfaction of figuring it out)! Maybe this group can help? It can’t hurt, at the minimum.
Have you reached out to the NIH? I actually went down there for a clinical trial…my issues were interesting enough to fit into a study…though they still didn’t sort it all out, they did get me on a path to treat the issues that my regular docs were able to maintain. If it’s unusual enough, they will find a way to get you into some type of research or clinical testing…and there is no cost or insurance charge.
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Circling back to see how you are.
Have you tried FODMAP diet?
Or low/no histamine foods?
I suspect a portion of my problems come/came from histamine intolerance (thought it was nightshades) gluten sensitivity and whatever plagues those MTHFR ++
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thanks for advice
Things may have changed procedurally at Mayo, but there is hope of getting accepted. I applied online for an appointment - denied within a couple of days. My doctor (okay, one of my many doctors - this happened to be my GP) put in a referral for rheumatology, and after about a week and a half, I was notified Mayo will see me. I don’t know what magic my GP’s office worked, but I think Mayo might take a doctor’s referral more seriously than an online application.
I just heard from Mayo this week, and my appointment will start June 4. If you have any questions, I’ll do my best to answer them. Don’t give up - I did, and now I’m at the ready-to-Jump-off-a-bridge state.
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I did not mean to say Mayo would not accept people but Ace you applied to Rheumatology so you must have some clue what is wrong with you.
My symptoms and signs don’t point to any speciality so Mayo didn’t know where to assign me. Mayo no longer does a general assessment and referral to multiple specialty clinics. They used to do this but not anymore.
Hopefully that’s clear , none of the specialist here have found any data that would point me towards a speciality. Also generally the physicians I’ve seen don’t recommend the trip to Mayo as I’ve had all the testing sometimes multiple times. . Mayo is best for people without access to University Hospitals and clinics.
A friend sister just came back from Mayo and her father is rather famous surgeon so he was able to get her to the right doctors(not interns). She said it was exhausting but more importantly all they could tell her was what she doesn’t have. No help at all.
Hope you have better luck.
Yeah, that’s the problem (!!!) with auto-immune diseases - they all seem to mimic other stuff! I applied online for more neurological/autonomic symptoms. It was my GP who worked the RA angle. Haven’t seen a rheumatologist in years, but maybe that’s the magic word?
When I applied online, the lovely young lady who called me put me down for a general assessment (GIM). Now, remember, I was rejected for this! But, they must still accept people.
My guess is your best bet is having your GP recommend/refer you…maybe even state which system he/she thinks is causing the issue. Just try to get a foot in the door? I’ll report back after my visit if it was worth it! If not, hey, at least I was born in MN and can pretend it was a vacation “back home”.
Please let us all know how your visit turns out and watch out for tests your insurance won’t cover.
Good Luck
In the mid 80s I was undertreated for Hashimoto’s Thyroiditis, an auto-immune condition of the thyroid causing low thyroid. I tested low normal but my body thought I was sick and my metabolism slowed way down. Because of that I had reactive hypoglycemia. Also, I had an undiagnosed food intolerance (though now they say some people metabolize some things very slowly and it can build up in their system) to FD&C yellow #5 which is chemically related to aspirin, yellow 6, Motrin, etc. i had a rash all over my arms and legs, constant migraines, horrible stomach cramps, I was jaundiced. I finally tested low thyroid and they gave me the new synthroid, a yellow pill. Going to the movies left me looking like I was on a 3 day drunk. My dental hygienist was going through feedback for my TMJ and asked me about new meds, etc. She had that issue and had gone to the New Orleans Diagnostic Clinic and wouldn’t leave until they found it. I stopped the dye. Finally went to a good endocrinologist again. 1-2% of people can’t handle the yellow dye. It could be a slow metabolism. You may want to keep a food diary or try the elimination diet. Get tested for low thyroid or high thyroid and Hashimoto’s thyroiditis (they never test for that stuff and it’s really common, not sexy I guess) or Grave’s disease. It could be you just don’t metabolize something fairly innocent and it is building up in your system. Get tested for heavy metals too. Good luck.
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Sending you a pm.
Thanks Hut Ho78 but yes I have been worked up including Thyroid actually first thing they did.
FYI recent new genetic information out about how different people metabolize drugs, some people are rapid responders, some don’t respond and everything in-between; Extremely dangerous for blood thinners like Warafin and anesthesia .I am not sure if testing is available everywhere yet but I think some hospitals are starting to test.
Invitae is the genetic company the local University Hospitals use but you need physician referral. Actually for $2500 they will test entire Exome but need referral.My neurologist did refer and insurance paid for neurological genetic testing luckily nothing.It is amazing as ten years ago I believe it was 100K for complete genome but you really only need exome testing . I’m getting out of my depth here.
Frustrating week as specialist once agin refuse to think, just do usual test and then goodbye. They don’t listen and I explain I am going to a tertiary hospital physician because whatever is wrong is not fitting the 30 common disease.
OK I should be glad so many awful things have been ruled out and sadly I have had PM from others on this thread whose long search gave them bad news.
Should be glad but instead just angry and very very sick of it.
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Did they look at sensitivity to tartrazine/Azo dyes/aspirin/sulfa? And yes, keep climbing to get out.
there are some good articles NIH about this , they found its often the substances that bind the driugs that make people sick. Remember quality control is gone and most meds now are made in countries with out much regulation. I take a prednisone table and when they changed generic I got ill, luckily my drug store got me the original manufacturer and put it in my record. I once went through generic change and it burned my mouth so bad I went to ER thought I was poisoned. They were so used to it knew what it was immediately. I no longer take generics but still…
The FDA would beg to differ with you on this. FDA approved drugs manufactured outside of the US are subject to the same quality controls that domestically produced drugs are.
I won’t disagree that some people have different reactions to generics vs. the original drug due to the excipients/carriers, but many brand name drugs are manufactured outside of the US as well.
Good luck to you - based on my mother’s experiences I know how frustrating it can be to have a difficult to diagnose disease. She went through through a myriad of tests before finally being diagnosed with acquired hemophilia. She’s literally one in a million (or more).
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I don’t want to start something but I do know of what i speak and it is based on direct information from past managers of Quality control at major Pharmaceutical companies in N.C. In other words “the horses mouth”.
