People can't solve problems like this one without experience in the medical field, which you're unlikely to find here.
Can I stress this? This person doesn't need medical advice from HN. What he needs is to keep seeing specialist doctors until he can find one that can diagnose him correctly. Dealing with the medical profession, especially in the US, takes a lot of energy that a person in this state does not have.
So instead of trying to guess at his disease, why don't people brainstorm the issue of how to get access to more doctors?
Here's one to start the ball rolling: hire a part-time personal assistance and make it their job to get you medical appointments. Okay, that's a possibly unrealistically expensive suggestion, and I am sure others can do better.
This person doesn't need medical advice from HN. What he needs is to keep seeing specialist doctors until he can find one that can diagnose him correctly
He's been doing that for 18 years, it's natural to try something different.
He's been doing that for 18 years, it's natural to try something different.
The likelihood of him not having found the right doctor vastly exceeds the notion that he can get a diagnosis on HN. Of course I certainly don't blame him for trying - but, really?
I am actually rather shocked that here is a person who basically says "I have this horrible disease and have trouble thinking straight" and people think the appropriate response is to suggest diet modifications.
From reading his account, I can see two conclusions: (a) he has not found the right doctor or (b) he is incurable. There is no point contemplating the latter, so the only recourse I see is helping him somehow get to the former. He needs a doctor who will take ownership of his issues, he needs a teaching hospital, he needs House MD - I don't know - but he needs help to keep trying doctors, not guesses at a diagnosis.
Upvoted. Going off on wild goose chases will waste more of OP's energy, money, and time. Quacks like homeopaths thrive on the troubles of exactly the kind of people who have tried other cures and are desperate.
"I am actually rather shocked that here is a person who basically says "I have this horrible disease and have trouble thinking straight" and people think the appropriate response is to suggest diet modifications."
You are making the common mistake of assuming that people will just believe everything people write on the internet. Why not give the OP the benefit of the doubt and assume that he can sort through the answers in a rational enough way.
And it could still be diet related, you know... Even this clumsiness which sounds like a scary brain tumor symptom, who knows, maybe it is just lack of blood sugar or whatever (I have no idea).
Also, how do you suggest he finds the right doctor, if not by somebodies recommendation? Isn't stuff like that the primary reason that people talk and exchange information?
I think the fact that one can go from doctor to doctor for 18 years and not get a proper diagnosis speaks volumes about medicine today. We collectively know so much about the human body and its afflictions, but yet so many doctors seem clueless.
Why is it not worth a shot to ask? I wouldn't necessarily ask for medical advice nor follow it, but there'd be that small chance someone else would know something worth pursuing with my doctor (like what seems to have happened in this topic).
For about 6 months on end this past year I had a laundry list of respiratory issues that several different doctors I went to couldn't figure out the root cause of. All anyone could do was to deal with the symptoms, try to come up with some kind of diagnosis, and hope that it'll fix whatever was going on. I was on at least half a dozen different meds ranging from a monthlong course of Levaquin to prednisone and nasal sprays and more at any given time, and of course none of that stuff would do anything about a nasty, persistent cough that would never go away (great timing with the H1N1 scare!).
So after too many xrays and ct scans and blood tests and blowing into things and who knows what more, I was really fed up. I had been to all sorts of specialists, general practice, even my dentist (sinusitis at some point, had to rule out anything to do with my teeth), and everyone was out of ideas. It was wrecking my relationships with some clients who thought I was giving them the flu, it was preventing me from even climbing up a flight of stairs on a bad day, the cough was bad enough that I'd wake up multiple times during the night, everyone and their mother thought I had a cold or the flu or $deity forbid H1N1... I was on the verge of crying when I was waiting for a flight at an airport when some woman that had sat down next to me decided standing up and away from me was preferable to being next to me coughing into my elbow away from her. And I didn't have anything contagious at that point. :/
I bounced ideas off some friends, I ranted on twitter and irc, went to one of the doctors suggested by someone I knew, and after mixing that all together, a specific combination of a few meds solved every problem I had. A little ridiculous to think about in the end, but my limited crowdsourcing worked for me. Even with the complete lack of domain-specific knowledge, it was a bunch of fresh pairs of eyes thinking things in their own way as I and all my then-doctors had started to become one with "we have no idea what's going on".
However, had any of my doctors pulled a House and ditched some choice assumptions about what happened with "99% of [their] patients" that had any one of my issues or "what happened in [my] medical history", I probably would have been much better off earlier. But I eventually (mini-crowdsourced and) met my House that assumed my medical history is tantamount to a lie and started with a blank slate. What everyone had assumed was the effect was a cause, where it was assumed something would work because it worked in the past was proven to be wrong, and now I'm here, minus most of the problems I had back then and managing the problems I can manage, happy and reasonably healthy today :)
I've had a continuous problem with sinus infections which always turn into bronchitis if untreated, which means I'm constantly on antibiotics, surgery barely helped, and last summer I tried to "heal myself" without antibiotics -- just for once -- and was doing fine for 1 month while exercising daily and sinus rinsing etc, etc, and after I took a 2-day break from exercise, I got so sick I thought I had pnuemonia, had to go to the emergency room.
I haven't been well since. I am always tired, wheezing, etc., that yes, doctors keep trying to treat as surface issues, with steroid inhalers and nose sprays (that I can't take because I'm extremely sensitive to steroids).
Haven't found a doctor yet who will really look at the whole history and figure out why I am like this now, as opposed to just treating the individual symptoms.
My brother has had somewhat similar symptoms for years. About a year ago he got a cranial x-ray for unrelated reasons, and the doctor discovered one of the largest sinusitis infections he'd ever seen. (Unfortunately, due primarily to living in a country without accessible medical care -- the United States -- he hasn't followed up on taking care of it.)
Also, make sure you keep an extremely clean and airy environment. Dust, mold, pollens, etc. will aggravate the condition.
I had multiple bouts of bronchitis and pneumonia and sinus infections and probably a cold or two and sometimes at the same time. Those were definitely diagnosed and treated as they came, but I had an underlying cough that would not go away. Everyone blamed the cough on lingering effects of the bronchitis and blamed the runny nose on the sinus infections and general breathing problems on the fact that I had just had (insert infection here)...so everyone treated that and just gave me way too much narcotic cough syrup so I can sleep at night.
What it really was was that I had all of those, but they weren't as severe or as lingering as everyone thought it was as the runny nose was primarily from allergies and cough from asthma that I thought I had "grown out" of years ago. Mind you, some of the drugs to treat the symptoms were still the same, but everyone was so focused on the obvious and on the past (that I had had asthma and it was successfully treated with primarily Advair) that nobody thought to realize that maybe, just maybe, it was back and triggered by something and that all these issues were also overblown as a result, and the same drugs wouldn't necessarily work this time around. Someone at some point suspected the right thing, but Advair used to work for me, and it didn't work this time around, and more than one had put me on prednisone at some point or another and that should have done something but it didn't make a big difference either, so that came and went off the list a couple times. On the flip side, they weren't so cavalier about antibiotics, as I kept on getting switched to new ones as the old one would either stop working or wasn't effective after a few days.
So with a fresh slate and with not making assumptions based on even as-recent-as-a-week-ago past, my House thought the infections were related (had enough antibiotics and more to mask the symptoms, but probably not gone altogether) and that my asthma was probably back and bothering me at the same time since if he ignored all the symptoms clearly and only associated with my infections, it was exactly asthma, rather than shoehorning that into "oh it's because of the bronchitis" cause that's what happens to "most people". In the end, one month of Levaquin seemed to work to obliterate my then-sinus infection, and the rest of it disappeared into thin air when I started a combination of Symbicort, predisone, Xyzal and Astepro. Unfortunately I doubt that would work well for you as half that are steroids :S
Soooo...I know when I had the sinus infections from hell, my neti pot was my best friend (every hour, if I could get away with it...), but I don't have any suggestions beyond that :( My story is more of a "people made assumptions and they were wrong about something so obvious" than a rare/hard to diagnose one.
Unfortunately, you're right, what helped you couldn't help me... I can't take Advair (although it kinda helped), because of anxiety attacks and hallucinations. I also can't take Levaquin! I took it once 5 years ago for a sinus infection, and had to stop in a couple days, because of stabbing pains in my ankles and elbows. Did you know that one of the side effects is listed as "tendon rupture"!? I panicked and stopped taking it, the doctor later agreed, but the pain lasted for weeks. So scary.
And I was a thin girl til I got an extremely rare side effect from a birth control shot called Depo Provera. They only put it in the literature years after it wrecked my body.
I'm screwed :)
EDIT: My complaint about the asthma is actually the opposite of yours. My doctors want to treat it as simple asthma, when I hadn't had symptoms for 12 years, until my misguided attempt to avoid antibiotics completely knocked me on my ass for 6 weeks.
The side effects of Levaquin still haunt me, despite having had none of them. It's been months, and I've heard stories about these issues appearing out of nowhere months later...still waiting for the tendon rupture to happen, heh.
I'm a girl too, and I avoid any suggestion of depo provera like the plague. I love the idea of the convenience (I am so bad with regularly timed pills, and am on nuvaring now), but the common issue of bone density loss alone steered me clear away, I can't imagine what happened to you :(
Honestly, I'd just consider getting multiple opinions. The surgeons will tell you to think about surgery, the various specialists will focus on your issues as it relates to their knowledge...no fault of their own, but finding the right person makes a huge difference. Good luck!
Wow! I had no idea those side effects could last so long. Maybe that's behind my sudden spraining of both ankles that happened months later? I'd always had floppy ankles, likely to fall over, but never really hurt myself when I did…
You're smart to avoid depo provera. I hope you encourage your friends too, as well. I didn't have any of the terrible side effects known at the time (eg. permanent bleeding) but I got glucose intolerance, which causes the body to respond crazy-like to carbohydrates of any kind, and caused me to gain weight no matter what I did.
I kept telling the docs, "Something is wrong!" and them saying "No, it'll even out, it's fine." or "Your appetite is just increased," even though my boyfriend backed me up that it was not. Jerks.
And of course the combination of depo+weight gain made me depressed and mentally foggy, and even less likely to advocate for myself, a nice one-two punch.
I gained so much weight, so fast, over 2 years, that my skin looks like a white-on-white zebra. I'll never look good in a bikini (even if I do manage to ever lose it all, which doesn't seem likely).
hire a part-time personal assistance and make it their job to get you medical appointments.
Too late to edit my own post, but I have since found that there are actually professional medical advocates - a random example I found by looking for somebody in Ohio is this guy:
Sure they seem to specialise in hospitalised people, but that seems to be because they are the very ill ones. I think the OP qualifies. Perhaps it would be possible to hire such a person to navigate the maze of getting to the right specialist, or how to obtain the most appropriate referrals - or any of these mundane matters that are so hard to tackle when one is simply exhausted.
OP here. I've been looking up symptoms and chasing specialists for years. The idea of an assistant (patient advocate) is really appealing though. That's the kind of thing I've always hoped to find in a Primary Care doc, but so far haven't found. It seems cosmically unfair that sick people lack the energy to rustle up the resources to get themselves properly treated, but that's reality.
The problem is that after the while, the experimentation doctors tend to do can become damaging. The OP already mentions one operation with negative net effect, as well as taking anti depressants for years (they tend to have side effects).
If you go to a specialist in X, he will at least experiment with some of the treatments for X (hence antidepressants if you go see a psychiatrist). I think that is just how medicine works most of the time: exclude some things from the symptoms, then experiment with cures. If you do that for several years, it becomes really trying.
I wonder if a nice database of everything that has been tried on a patient could possibly help a bit? Doesn't Google provide some kind of service for that?
Can I stress this? This person doesn't need medical advice from HN. What he needs is to keep seeing specialist doctors until he can find one that can diagnose him correctly. Dealing with the medical profession, especially in the US, takes a lot of energy that a person in this state does not have.
So instead of trying to guess at his disease, why don't people brainstorm the issue of how to get access to more doctors?
Here's one to start the ball rolling: hire a part-time personal assistance and make it their job to get you medical appointments. Okay, that's a possibly unrealistically expensive suggestion, and I am sure others can do better.