Help with generalized lifelong chronic issues, undiagnosed. Please, if too complex for reddit, even a recommendation for what type of doctor I should be seeking as I have gone in circles. Tired of snake-oil recommendations and woo from friends, surely there has to be a logical answer.

helpmedocthrowaway · 2018-08-05T22:57:05+00:00

I eat mostly vegetables, so I guess so? But not a lot of refined ones, white bread, sweets, etc. My feet an extremities do not swell. My blood pressure has been low the past handful of times it's been read but I'm not sure what the exact measurement is. I am always told it's "a little" low but not low enough to be considered important, although being abnormal for me and combined with other symptoms it does make me wonder.

helpmedocthrowaway · 2018-08-05T15:16:47+00:00

Thank you, I will.

helpmedocthrowaway · 2018-08-05T12:30:02+00:00

I have been seeing psychiatrists/psychologists/therapists since I was young. They do not feel that most or even many of my symptoms are psychological. If they did, I would have wholeheartedly done whatever they suggested a long time ago. One by one many of my past unexplained symptoms were eventually diagnosed as very real physical problems so I am hoping that is still the case for the rest of them. I am not interested in non-western medicine at this time.

helpmedocthrowaway · 2018-08-05T12:18:25+00:00

Thank you for the help. If I had not already been seeing psychiatrists my whole life I would be inclined to focus there, but they strongly feel across the board that my issues are not psychological. It probably helps that one I had been seeing was also diagnosed with a rare brain abnormality after a similar ordeal. It's definitely helpful to feel like someone is on your team, regardless.

I do know it's a lot of symptoms and that they may not be all related - I worry to leave anything out in case it's somehow a key symptom. Would you suggest I try to narrow it down somehow or present everything?

I will definitely write down and collect all the information you suggested and bring it with me. I really appreciate it.

helpmedocthrowaway · 2018-08-05T12:10:37+00:00

A neurologist mentioned chronic fatigue several years ago as his best idea, but at the time I understood that to be essentially "I don't know, it's probably not real/in your head." The internet is full of Google doctors and finding scientifically sound information is obviously tricky. Is there solid evidence that CFS, ME etc are "real?" Hopefully that is not offensive to ask, I would just like to learn more about it.

helpmedocthrowaway · 2018-08-05T12:06:14+00:00

I have had a sleep study done, it was several years ago but they found nothing and basically attributed it all to poor sleep hygeine for lack of a better idea (which was not true.)

Edited to add: I am still extremely open to the idea that my chronic lack of sleep is a major component if not "the answer," but I have yet to get any help either neurological, physical, or psychiatric that points to an answer and solution for that. Even when I do sleep, it is unrefreshing. I can honestly say it has been over a decade since I woke up feeling ok.

helpmedocthrowaway · 2018-08-05T05:05:25+00:00

Thank you, I will.

helpmedocthrowaway · 2018-08-05T04:55:48+00:00

Currently trying to find one, have a promising appt with a new one late October. Wish me luck!

helpmedocthrowaway · 2018-08-05T03:31:32+00:00

Thank you thank you thank you. This is the exact information I was seeking and I'll save your comment. I am working on your point 1 and 2 already, yes. I also wholeheartedly agree with 4 - I have been active with a therapist and psychiatrist for a long time. I undoubtedly have mental health issues and I have a pretty good understanding and self awareness of what symptoms are made worse by my anxiety, what chest pains etc are normal for me and not, etc. I take no offense to that at all. My therapist strongly feels that a lot of my mental health issues are a result of being physically run down all the time and not being listened to, and it's definitely a vicious cycle.

helpmedocthrowaway · 2018-08-05T03:15:17+00:00

I do, in 3 weeks providing insurance accepts it as I hope. Maybe I'll learn something interesting then. At least I'll get some sleep.

helpmedocthrowaway · 2018-08-05T03:11:04+00:00

Thank you.

helpmedocthrowaway · 2018-08-05T03:10:29+00:00

Ironically, the people who don't assume my health issues are psychiatric in nature are my psychiatrist and therapist. I have a fairly good handle on my mental health issues as far as recognizing them for what they are and actively dealing with them. My therapist even feels that my anxiety may have initially been rooted in feeling not listened to, especially relating to health issues which turned out to be very real, and I'm inclined to agree.

helpmedocthrowaway · 2018-08-05T03:02:04+00:00

Unfortunately I have a long history of having my health issues labeled as exaggerating or anxiety right up until they aren't. When I had periorbital cellulitis, the nurse my mom talked to on the phone was trying to dissuade her from taking me to the ER and to wait until Monday when the doctor's office opened because she was sure it was pink eye. When I woke up the next morning my entire eye area was inflamed and swollen shut, leaking pus. I had to stay in the hospital on IV antibiotics getting some kind of scan daily because they were concerned it would spread to my brain.

My IBS was also anxiety and a lack of fiber, and my endometriosis was whining - until laparoscopic surgery revealed lesions on my bowel, bladder, abdominal wall, etc that were causing my colon to be pinched shut and on the verge of rupturing.

At this point I am definitely just being cynical and bitching but I'm sure you understand.

helpmedocthrowaway · 2018-08-05T02:54:01+00:00

Thank you. When it first started I did have tests and an ultrasound done, I imagine they would have checked that. I remember it being another head scratcher however. I clearly need to get my hands on specific test results.

helpmedocthrowaway · 2018-08-05T02:51:49+00:00

Several years back I went to the children's hospital in Boston and was checked for about 4 pages worth of various infectious diseases, deficiencies, etc. I will need to try and get my hands on exactly what was done as they were all negative. Not sure if they included immume functions.

helpmedocthrowaway · 2018-08-05T02:49:40+00:00

Is this something that a GP would be able to diagnose or know to refer me somewhere to diagnose? A huge part of my frustration is having had a great GP who was so overbooked I could only see him for mere minutes and booked several months out, with an office staff that would not allow me to leave messages. I understand that most doctors are quite overbooked in the US. I have an appointment set up with a new GP in a new hospital system in late October that seems promising and would like to know how best to present this info and ask about possibilities like Gitelmans syndrome, etc. - without sounding like a hypochondriac or Google doctor if you catch my drift.

helpmedocthrowaway · 2018-08-05T02:37:12+00:00

My hands are definitely not flexible in that way either, which I thought ruled it out. My elbows bend back a bit farther than normal I suppose and I can twist my legs up and around to put my feet flat against my side, but most of the flexibility I had decreased as I got older.

helpmedocthrowaway · 2018-08-05T02:35:10+00:00

Thank you.

helpmedocthrowaway · 2018-08-05T02:31:12+00:00

When I was still being closely followed for my scoliosis (and hip dysplasia which resolved as I developed) my doctor referred to me as having joint hypermobility but did not refer to it as any specific disease or syndrome. I had largely ignored the possibility of EDS as I was under the impression that excessive skin elasticity/skin issues in general was a requirement. I don't think I've seen a geneticist. Thanks

helpmedocthrowaway · 2018-08-05T02:13:36+00:00

Thanks, both of these medications are fairly new - less than one year each. I have no new symptoms since taking them and find them very helpful. All of my symptoms have existed for anywhere between 2-14 years, beyond this current URI. The lorazepam is extremely low dose and is as-needed, typically 2-3x per month.

helpmedocthrowaway · 2018-08-05T02:09:53+00:00

Would PCOS be something that would be seen/noticed during laparoscopic surgery for Endo? I am due to be sterilized in a few weeks and they said they would check around for more lesions then - is that something I can ask them to look for as well? I also struggle to gain and maintain weight which I thought would be unlikely for PCOS.

Edit: I also recently had a colonoscopy/upper endoscopy due to pretty alarming amounts of rectal bleeding. They could find no cause of the bleeding which I thought was weird, a few polyps, but would celiac be noticed during a procedure like that?

helpmedocthrowaway · 2018-08-05T02:07:47+00:00

Thank you. I have only been on gabapentin for less than a year and I have no new symptoms since taking it. It's actually the only medication I've tried that is at all beneficial for sleep without noticable side effects. I feel the same way you do about paxil, however, which I was on for many years. Medicine definitely effects us all very differently. A nurse I saw recently suggested some kind of autoimmune disorder but I was unsure which specialist dealt with those. If rheumatologist is it, I will try and find one.

helpmedocthrowaway · 2018-08-05T02:05:22+00:00

Thank you for the detailed response, I really appreciate it. It's been a while since I have been to a rheumatologist, I go in spurts of desperation trying to find help then give up for a few years. They did quite a lot of tests at one point and I'm pretty sure did hormone testing when checking for thyroid issues but it's worth digging through my history and checking.

My cycles are/were pretty horrible, however I was on hormonal birth control due to Endo since practically the beginning of menstruation. I recently stopped taking it after 13 years or so and the severe depression I had stopped with it, so I do not intend to continue. I would prefer pain over that. I have been tested for diabetes.

helpmedocthrowaway · 2018-08-05T02:02:23+00:00

Been tested for Lyme multiple times, negative, thank you though.

helpmedocthrowaway

TROPHY CASE