That’s very good t know!
The outpouring of support has been amazing; I have read (and re-read) every single comment and wish I could formulate enough consistent thoughts to respond in a heartfelt manner to each and every one of you. For those that have suggested websites, I will be looking into them all, thank you.
I feel like it would have been much easier to get tested for Lyme if I were in MA, but in NC “Lyme doesn’t happen”. My PC is most accessible, but my neurologist although absent in the flesh seems to be much more involved in my “case”. His PA is female and is able to listen and once the message was passed along about how unwell I was (he is part of a very large practice with a massive reception area that sometimes doesn’t do well at that getting the messages to him since he is only there half days and at the hospital the other half of the day), I received a call and was able to schedule an appointment for the next day.
[QUOTE=charismaryllis;8409461]
MRI!
CT!
feel better. :([/QUOTE]
Thank you. I have an MRI with contrast scheduled for Tuesday. It is of my head and neck since I have an unrelated injury in the lower part of my cervical spine that shoots pain down my left arm when touched and gives me a blinding headache when my head is tipped backwards.
[QUOTE=beowulf;8409491]what is the possibility you are simply burnt out? 50 hrs + a week physical labor, + riding, + winter, + barn responsibilities for board… do this ad nauseum and people burn out quickly.
much of what you are describing happened to me last year, when i was working 50-70hrs a week as a barn manager… and then had to scrape time together just to ride. not worth it. pay/boss was awesome but i found an office job and even after plugging in overtime i don’t feel as exhausted anymore.[/QUOTE]
It is possible, but for me that’s “light” work. A few summers ago I was feeding, mucking pastures & stalls, tacking up for head trainer, throwing hay, turning in and out, riding my pony (the occasional 2 hr lesson from hell), lunging horses, and teaching lessons. I pulled 12 hour days 6 days a week in the 100 degree and humid NC summers, and short a few heat exhaustion’s in the middle of the night that had me curled up on the bathroom floor, I survived unscathed.
I know I’m a few years older but even now, I’ve cut down to no riding, no feed/water/hay farm work, no stalls, no walking dogs, occasional lunging, no carrying feed bags, and the list goes on. 
Whether or not I get up and move around I still feel terrible and it still seems to be getting worse. I still work 30 hrs a week at the tack shop but even that has me beat by the end of the day.
[QUOTE=cayuse;8409902]Even though your labs came back negative for arthritis you still may have it. I was one of those people. It took a LONG time before I was able to get a diagnosis and it had progressed by then so if it is not Lyme, you might want to revisit the RA again. Just in case.
And about being curt and not intending to be? I can relate to that.
I hope you get an answer soon and if you don’t, persevere until you.
Oh, and do you have anyone that can go with you to your appointments as “reinforcement”? Someone who can advocate for you and push for answers? Sometimes that helps to get their attention.[/QUOTE]
Yes, I’m still waiting on a call from the rheumatologist. If I don’t hear from one soon, I will call my PC back.
My aunt will be here at the end of the week, she is a nurse at Stanford and tends to be the “advocate” type. Although she will have her hands full between me being sick and my mom starting treatment for NH Lymphoma.
[QUOTE=tbchick84;8410530]While you’re waiting/looking for a doctor to help you, try systematically eliminating food groups. With the symptoms you describe, I would start with dairy. At 26, you might just be finally getting to a point in your life where your body is no longer able to tolerate foods it used to be able to process. I had what I’ll call a bad tummy for years. After many tests, visits to specialists and being pat on the head each time saying it’s stress, I eliminated dairy. I haven’t had a bad tummy day since.
With your job, Lyme is a very good bet, but please investigate more simple causes as well.[/QUOTE]
I already avoid lactose, gluten, and goats milk and as much corn and soy as possible. Goats milk is sever “bad tummy” that is worse than lactose, lactose is the “bad tummy” if I consume too much (all at once or small amounts regularly), gluten seems to induce migraines, soy milk seems to give me more “bad tummy” than 2% milk but GF soy sauce doesn’t (although it is a quantities thing), and corn is an inflammatory factor in all of the above (if I have too much it seems to reduce my tolerance for the others).
I also avoid MSG, Nitrites, “cured” bacon, artificial sweeteners, and try to eat less processed food and antibiotic-free meat. I’m also careful about the fish I eat (where they’re sourced/mercury levels/etc.).
[QUOTE=suz;8410666]About brain mris–I’ve had quite a few since 06. Each and every time it is noted that the white matter in my brain looks like I am either very elderly or have MS or Huntington’s disease–don’t look that one up—it is terrifying.
On my last brain mri, it was also noted that chronic lyme could cause those changes, much to my relief.
I now know that MS and Lyme are thought to be closely related, and fibromyalgia is probably too.
And to think that the USA government brought it here deliberately.[/QUOTE]
Darn that government. lol
I know what Huntington’s, MS, Wilson’s, Lupis, and Grave’s are thanks to Dr. House. 
And of course I’m in the “age group” for basically all of these (as well as depression, bi-polar, schizophrenia but I haven’t heard any voices yet, I’ll keep listening.)
I’m glad that it’s not Huntington’s!!! (scary)
[QUOTE=Magicboy;8410803]Have you thought about going to an ER with your symptoms? Pick a slow time, be really clear about the vertigo, etc and my guess is that they will run a bunch of tests for you then and there…ask for Lyme testing along with the other blood work. It will be more expensive, but you won’t have to wait on appts to get tests done
Hang in there![/QUOTE]
I’ve been, not supper recently, but I’ve been (more times than I’d like to admit, all resulting in pats on the head and a “you’re fine”). After a random “almost pass out” episode, in the car. Their answer was nondescript “dehydration” despite not having done anything that morning besides go to the feed store (got TWO bags of hay cubes, not twenty) and I was half way home when I started feeling suddenly “unplugged”. EKG, blood work, urinalysis, chest x-ray, etc.
I’m a healthy invalid. I hate to say it but I’m almost clinging to the hope that my neurologist’s PA will find something. That either the MRI or the Lyme test will show something, because honestly, this is becoming exhausting.
[QUOTE=Simkie;8410885]Is it really that untenable to order your own Lyme testing and take that to your doc of choice? Surely there are labs that will test without a doctor order?
Ah, yes. Indeed there are.
http://requestatest.com/lyme-disease-testing[/QUOTE]
That is super handy and I hope more people are able to utilize that. Thankfully my neurologist’s PA was willing to do it, she just didn’t want to step on the rheumatologist’s toes. But as I hadn’t heard from the rheumatologist after the bloodwork was (supposedly) sent to him, so I decided that it wasn’t worth the wait and called the neuro for the Lyme test. Just have to wait for the results now.
As a bonus, the Neuro has their own Infusion Clinic, blood lab, Pharmacy, MRI, and plenty of other fun neurodiagnostics like nerve conduction studies, electromyography, electroencephalography, and evoked potential studies. I’m scheduled for a nerve conductor test mid December, since, as she put it “the only thing it will hurt is you”.
I think these folks will be able to help you to dispel the “lyme is not in NC” ignoramuses. http://carolinalyme.org/
I use a doctor who is affiliated with this organization: http://www.ilads.org/. Contact them to find a doctor near you who knows what they are doing.
Any updates? How are you, OP?
If not Lyme, Myasthenia Gravis and Celiac are jumping out at me.
I have MG and my sister has Celiac so it may be a case of when all you have is a hammer everything looks like a nail, but what you have going on feels really autoimmune-y.
[QUOTE=Magicboy;8415181]
Any updates? How are you, OP?[/QUOTE]
No real updates. Had the longest MRI of my life (so weird to say that). They MRIed my head and neck (the obscure neck pain that may or may not be related to my mare mare having a “leap in the air and buck” kind of day a while ago that has made the weakness & pain in my left arm more pronounced). They did it all first without contrast and then again with contrast. OMG I’m not claustrophobic and I almost had a total meltdown, clenched so much I blew my vein they had the IV in.
Still waiting on the results of the Lyme test. I’m assuming it had to be sent off and it doesn’t have great turn-around time (at least not in the south). With the holiday, I’m expecting a call about the results of both (MRI and Lyme) at the beginning of next week since I can’t imagine the neurologist would be open Friday. Although I was HOPING for results this week./ Impatient.
On the bright side the rheumatologist finally called. I have an appointment for February 17th. /Facepalm.
[QUOTE=french fry;8415291]If not Lyme, Myasthenia Gravis and Celiac are jumping out at me.
I have MG and my sister has Celiac so it may be a case of when all you have is a hammer everything looks like a nail, but what you have going on feels really autoimmune-y.[/QUOTE]
That’s what I’m sort of worried about. I’m tempted to get in contact with the endocrinologist I saw in 2009 to see if they could fit me in at some point since my thyroid is MASSIVE despite functioning normally. It doesn’t feel abnormal (says PC) but it is HUGE and gets bigger and smaller. But with the rapid weight loss (up to 20lbs now) and full body assault, the thyroid is a likely suspect despite “normal” blood work (how normal can it be when my neck looks like I have half a naval orange stuck in it?). I think MG and thyroid disease (like Grave’s) can be associated due to their autoimmune-y relationship. I also fit the bill for MS.
I’m hoping that whatever it is, is easily manageable or curable. I’m not sure I can handle not sitting on a horse again.
This thought may not be popular but if the doctor’s can’t find anything medically wrong with you, your going through all these tests and hoping that they do, why not just suck it up and go on with life each day and deal with what your dealing with instead of being impatient, spinning yourself up, worrying and thinking maybe it is this or that or another? That in itself can make a person sick or we assume it is something when it is not, but our own self being so worried we make ourselves sick.
I don’t mean to down play what you are dealing with, I myself wake up each and every day so sore I have to move around to even feel human, I work at 3 barns part time, I run my own barn and many of the chores by myself as my husband travels a great deal for his job. I have been to the doctor several times for feeling so tired all the time, I could stop, sit and sleep where I stood many many times, yet he can’t find anything wrong with me or tell me why I ache so bad. So, I deal with it and am thankful for each day, I am rather stoic and don’t often tell my husband or others how horrid I feel.
What popped out at me when you said that it looks like a naval orange is stuck to your neck, could it be a goiter?
Just my .02 worth and good luck.
Getting on with life as best you can is NOT mutually exclusive with trying to find out what’s wrong and how to make the best of things. Research is part of self care…denial is not, IMO
I had/have lyme also. I had no rash, fever or headaches. I did find ticks but thought I got them off quick enough, had no real bites. And hadn’t for months before my first attack. I was working in a restaurant doing very physical work with no real problems beside being beat after a busy weekend or double shift. Suddenly one slow night I couldn’t walk. My lower legs just ached. I got to a doctor days later and he treated me for lyme before we got the results. Sure enough I was positive. I got better but slowly. I went back to work but could not do doubles or back to back busy shifts. 6 months later my hip suddenly hurt. I had had some discomfort in it for years after riding harder than usual (in a lesson or something) but nothing terrible. Suddenly I was totally crippled again. 3 doctors said arthritis, no one would consider lyme again. I put off treatment because of a vacation and got somewhat better. I went to my regular doctor for something else and he then agreed that it might be lyme so gave me more doxy. I never got comfortable enough to go back to that job. I did stuff but was limited. I tried riding but that got worse over the next year or so. I finally broke down and got a hip replacement just a month ago. The surgeon said it might have been the lyme that went to a weak joint, but it destroyed it. Hopefully this will make it better.
Sorry to go on with my sob story. But you don’t have to have the overt symptoms. I have not had an issue for two years now, I hope that I am done, but once it is in your system it lingers.
[QUOTE=PassagePony;8416430]
This thought may not be popular but if the doctor’s can’t find anything medically wrong with you, your going through all these tests and hoping that they do, why not just suck it up and go on with life each day and deal with what your dealing with instead of being impatient, spinning yourself up, worrying and thinking maybe it is this or that or another? That in itself can make a person sick or we assume it is something when it is not, but our own self being so worried we make ourselves sick.
I don’t mean to down play what you are dealing with, I myself wake up each and every day so sore I have to move around to even feel human, I work at 3 barns part time, I run my own barn and many of the chores by myself as my husband travels a great deal for his job. I have been to the doctor several times for feeling so tired all the time, I could stop, sit and sleep where I stood many many times, yet he can’t find anything wrong with me or tell me why I ache so bad. So, I deal with it and am thankful for each day, I am rather stoic and don’t often tell my husband or others how horrid I feel.
What popped out at me when you said that it looks like a naval orange is stuck to your neck, could it be a goiter?
Just my .02 worth and good luck.[/QUOTE]
Thanks, but it is fairly insensitive to tell a 26 year old that went from being capable of working from 6:30 in the morning to 8:30 at night and having friends and a social life to barely able to handle working 30 hours a week to “just deal with it”. My mother with Lymphoma has more energy than I do (no exaggeration). Lifting my arms above my shoulders is exhausting, I have the best control of my thumb and index finger and the control and sensation is degraded in the middle through pinky in both hands (extension more than flexion), speaking is a lot harder than typing although I still have “word search errors” when typing as well (I just get to erase them so I seem more normal), and you know that feeling when you are tired and you get some place and you think “I hope I stopped at that sign” or “I hope I didn’t run that light”… I get that CONSTANTLY. I’ve tried sleeping less, and sleeping more, I take sleep meds and they don’t help much; but because I’m “not sick” and I need to “suck it up” I have to drive my lazy ass to work and back 5 days a week.
Yes, it’s a goiter, but my thyroid function is “normal” per my PC[primary care] (see my frustration).
Having no name for what is going on with me gives a very bleak outlook for the rest of my life (taking swings in the dark at an unknown enemy). Having a diagnosis means I have a direction in which to head to either feel better or at least slow down the progression of feeling worse.
This. I already did too much denying, mostly because I have been reassured I was “fine” by said PC multiple times. I’m just getting so frustrated that it seems more logical to my PC that I have tons of little problems that are compounding into almost total incapacitation rather than one slowly progressing disease that would explain everything.
[QUOTE=Classicgal;8416517]I had/have lyme also. I had no rash, fever or headaches. I did find ticks but thought I got them off quick enough, had no real bites. And hadn’t for months before my first attack. I was working in a restaurant doing very physical work with no real problems beside being beat after a busy weekend or double shift. Suddenly one slow night I couldn’t walk. My lower legs just ached. I got to a doctor days later and he treated me for lyme before we got the results. Sure enough I was positive. I got better but slowly. I went back to work but could not do doubles or back to back busy shifts. 6 months later my hip suddenly hurt. I had had some discomfort in it for years after riding harder than usual (in a lesson or something) but nothing terrible. Suddenly I was totally crippled again. 3 doctors said arthritis, no one would consider lyme again. I put off treatment because of a vacation and got somewhat better. I went to my regular doctor for something else and he then agreed that it might be lyme so gave me more doxy. I never got comfortable enough to go back to that job. I did stuff but was limited. I tried riding but that got worse over the next year or so. I finally broke down and got a hip replacement just a month ago. The surgeon said it might have been the lyme that went to a weak joint, but it destroyed it. Hopefully this will make it better.
Sorry to go on with my sob story. But you don’t have to have the overt symptoms. I have not had an issue for two years now, I hope that I am done, but once it is in your system it lingers.[/QUOTE]
Thank you. It’s super reassuring to hear that others have made it through to the other side of the struggle and I just need to keep “pushing” through until I have an answer.
I hope you’ve beaten Lyme this time!
“light work” - yeesh.
we all think it’s childs-play, working overtime, extending our waking hours, overtaxing ourselves – that is, until mental fatigue manifests physical symptoms. :winkgrin:
whatever it is, keep us updated. i haven’t been tested for lyme but i had all the symptoms you did that summer i had a similar job – and most of them went away within a few weeks of a desk job.
“light work” - yeesh.
we all think it’s childs-play, working overtime, extending our waking hours, overtaxing ourselves – that is, until mental fatigue manifests physical symptoms. :winkgrin:
whatever it is, keep us updated. i haven’t been tested for lyme but i had all the symptoms you did that summer i had a similar job – and most of them went away within a few weeks of a desk job.
Hi. I’m so sorry you’re going through this, but you are getting closer to the answers! If you have an enlarged thyroid (goiter), then you have something very wrong with your thyroid. That combined with all of your symptoms and it sounds like possibly an auto immune thyroid disease. (please search on thyroid in Off Topic…lots of convo’s over there). And yes, you could also have Lyme, too. (ALL of your symptoms…every single one…and goiter…screams thyroid to me.)
Ima broken record, but so many people sound like they have undiagnosed/under treated thyroid issues…because their dr only tests TSH, which tells you nothing. I could have practically written your post: told thyroid was fine for 10 years, kept getting sicker sicker sicker, esp last 3 years…I also wondered about the same conditions which you are…complete with neck/upper back pain, MRI’s, CT scans. Slightly enlarged thyroid/small goiter. Nodules which had to be biopsied (benign). Feeling so awful for so long; wondered what I was dying from that drs had missed. Oh, it was just a little auto immune thyroid disease is all, and it didn’t happen over night. :mad: I have Hashimoto’s. In early stages, some people lose weight (hyperthyroid) as I did, but I have the Hashi antibodies where my body is trying to kill off my thyroid. Hypo doesn’t always mean you gain lots of weight. I have never been overweight, but most I ever gained was 10, which was overweight on my tiny frame. So hard to lose last 3 now.
Do you happen to have low body temp or feel cold a lot? Cold or heat intolerance?
If your doctor is not doing a complete thyroid panel and is only testing TSH (which can be norm levels but you still have thyroid disease), please consider finding another doctor asap or ask (tell) your dr to will run the following tests, so that you can eliminate thyroid disease:
TSH
free T3
free T4
tpo/ab - thyroid peroxidase antibodies (Hashimoto’s)
tg/ab - thyroid globulin antibodies (Grave’s)
If TSH is norm range, but free T3 and/or free T4 are off, and/or you have antibodies, you will feel horrible and have symptoms just like the ones you’ve mentioned. If you do have thyroid disease, you can feel better in as little as a day or two once starting medication.
Regarding your neck/arm/hand issues, please google thoracic outlet syndrome. Are the scalines tight on either side of your neck, down to base of neck and clavicle, and you get the neck/arm/hand issues? Then possibly TOS. My pain improved greatly with thyroid meds. (neck/upper back pain sometimes goes with thyroid disease).
So many illnesses present with similar symptoms. Process of elimination in getting proper diagnosis. I hope you get answers and relief soon! You are getting there!
15 pound weight loss in two weeks is nothing to brush off - that is very dangerous, and if you are also eating normally, suggestive of something pretty important.
Some of the symptoms you have could in fact be secondary to that weight loss - if your digestive system is not properly absorbing food, you will be missing key nutrients like B-12 that are key to proper neurological function.
Keep pushing to get a diagnosis.
It has taken an entire year for my husband to get an accurate diagnosis for the intermittent pain in his chest.
Even I accused him of being a drama queen and humbly back peddled.
He had an MRI, a CT, and was put under three times.
Once to check an old hernia surgery which they said the old scar tissue was “probably” the cause for his intermittent pain.
Once so his heart doctor could look at his stent and pronounce his heart in better condition than ever and the stent working 110%.
FINALLY on the third time of being put under, and only one more thing to check, he was diagnosed with Barrett’s Esophagus and thankfully the polyp at the bottom of the esophagus was benign.
That all transpired over one year with the Barrett’s diagnosis being the last thing. How very fortunate the polyp didn’t do something ugly during the year it took everyone to find it.
I can’t offer suggestions but, you have received great suggestions from others.
My prayer for you is that you keep forging ahead, until somebody listens to you, preferably sooner than later:)
I’m very sorry to hear what you are going through. Your symptoms sound much like my sister’s experience with fibromyalgia. It took several years and countless medical evaluations and treatments before she was definitively diagnosed.
[QUOTE=beowulf;8417404]
“light work” - yeesh.
we all think it’s childs-play, working overtime, extending our waking hours, overtaxing ourselves – that is, until mental fatigue manifests physical symptoms. :winkgrin:
whatever it is, keep us updated. i haven’t been tested for lyme but i had all the symptoms you did that summer i had a similar job – and most of them went away within a few weeks of a desk job.[/QUOTE]
I was hoping that was the case, I really was, just a little too overzealous on the working. Ugh.
[QUOTE=Color of Light;8417648]Hi. I’m so sorry you’re going through this, but you are getting closer to the answers! If you have an enlarged thyroid (goiter), then you have something very wrong with your thyroid. That combined with all of your symptoms and it sounds like possibly an auto immune thyroid disease. (please search on thyroid in Off Topic…lots of convo’s over there). And yes, you could also have Lyme, too. (ALL of your symptoms…every single one…and goiter…screams thyroid to me.)
Ima broken record, but so many people sound like they have undiagnosed/under treated thyroid issues…because their dr only tests TSH, which tells you nothing. I could have practically written your post: told thyroid was fine for 10 years, kept getting sicker sicker sicker, esp last 3 years…I also wondered about the same conditions which you are…complete with neck/upper back pain, MRI’s, CT scans. Slightly enlarged thyroid/small goiter. Nodules which had to be biopsied (benign). Feeling so awful for so long; wondered what I was dying from that drs had missed. Oh, it was just a little auto immune thyroid disease is all, and it didn’t happen over night. :mad: I have Hashimoto’s. In early stages, some people lose weight (hyperthyroid) as I did, but I have the Hashi antibodies where my body is trying to kill off my thyroid. Hypo doesn’t always mean you gain lots of weight. I have never been overweight, but most I ever gained was 10, which was overweight on my tiny frame. So hard to lose last 3 now.
Do you happen to have low body temp or feel cold a lot? Cold or heat intolerance?
If your doctor is not doing a complete thyroid panel and is only testing TSH (which can be norm levels but you still have thyroid disease), please consider finding another doctor asap or ask (tell) your dr to will run the following tests, so that you can eliminate thyroid disease:
TSH
free T3
free T4
tpo/ab - thyroid peroxidase antibodies (Hashimoto’s)
tg/ab - thyroid globulin antibodies (Grave’s)
If TSH is norm range, but free T3 and/or free T4 are off, and/or you have antibodies, you will feel horrible and have symptoms just like the ones you’ve mentioned. If you do have thyroid disease, you can feel better in as little as a day or two once starting medication.
Regarding your neck/arm/hand issues, please google thoracic outlet syndrome. Are the scalines tight on either side of your neck, down to base of neck and clavicle, and you get the neck/arm/hand issues? Then possibly TOS. My pain improved greatly with thyroid meds. (neck/upper back pain sometimes goes with thyroid disease).
So many illnesses present with similar symptoms. Process of elimination in getting proper diagnosis. I hope you get answers and relief soon! You are getting there![/QUOTE]
You mean my stiff neck? 
It doesn’t hurt but it’s like my brain thinks it will hurt if I move it too far to either side. It’s been tight for a long time, especially down the left side, the side with distinct shooting pain.
I have a feeling it was the “standard” Thyroid test, as a PC isn’t really designed to test for specifics. I need to call the Endocrinologist that did the ultrasound and testing in 2009 because I think I was “borderline” if I remember correctly, and my thyroid was on the “large side of normal” back then. I also have thyroid disease on both sides of my family (mother’s maternal g’ma had her thyroid removed due to a goiter in the 20’s and my dad’s mother had hyperthyroidism) so it seems like a likely candidate, and I’m in the “age group” for an autoimmune disease to rear it’s ugly head. :sigh:
As for the temp question. I’m sensitive to both. Hot and it’s like I can’t breath and I sweat like a pig, cold and I want a million blankets until I move (and then sometimes I heat up like a furnace and sometimes I don’t). Right now, despite being nice and toasty on most of my body, my nose is like ice and my legs feel like they are on fire (the rest of my body seems to be fairly comfortable).
[QUOTE=poltroon;8417677]15 pound weight loss in two weeks is nothing to brush off - that is very dangerous, and if you are also eating normally, suggestive of something pretty important.
Some of the symptoms you have could in fact be secondary to that weight loss - if your digestive system is not properly absorbing food, you will be missing key nutrients like B-12 that are key to proper neurological function.[/QUOTE]
I’m getting closer to 20lbs. Ugh! (I’m going to have to hit a gym before climbing back on my horse or she’ll take me for a ride!) I’ve also thought of B-12 because I have some of the risk factors (again “mysterious” enlarged thyroid and I’ve been on ranitidine since 2009), I think I need to write all of these down. I will forget if I don’t write it down.
I would like to note that I’m struggling to eat normally, so that may be part of the cause as sometimes when I eat my whole body feels inflamed and sometimes not… it’s like Russian roulette with food despite “knowing” what I am allergic to.
[QUOTE=walkinthewalk;8417896]Keep pushing to get a diagnosis.
It has taken an entire year for my husband to get an accurate diagnosis for the intermittent pain in his chest.
Even I accused him of being a drama queen and humbly back peddled.
He had an MRI, a CT, and was put under three times.
Once to check an old hernia surgery which they said the old scar tissue was “probably” the cause for his intermittent pain.
Once so his heart doctor could look at his stent and pronounce his heart in better condition than ever and the stent working 110%.
FINALLY on the third time of being put under, and only one more thing to check, he was diagnosed with Barrett’s Esophagus and thankfully the polyp at the bottom of the esophagus was benign.
That all transpired over one year with the Barrett’s diagnosis being the last thing. How very fortunate the polyp didn’t do something ugly during the year it took everyone to find it.
I can’t offer suggestions but, you have received great suggestions from others.
My prayer for you is that you keep forging ahead, until somebody listens to you, preferably sooner than later:)[/QUOTE]
Ugh Barrett’s is rough and painful (my aunt has it)! But I’m glad it’s not is heart! I’ll keep pushing! Thank you!
I’m sorry about your sister, and glad that she has a diagnosis finally. One of my very dear friends has fybro and I know how rough it can be. I agree that many of the symptoms line up.
I went from healthy (albeit injury prone) 18 year old to crippled very quickly. I was in school full time and working 10 to 14 hour days at the barn when things got Very Bad. I literally was at school, at the barn working or passed out. I didn’t watch tv or go out or anything. I would come home, eat and go directly to bed. I was a zombie. I couldn’t pour myself a glass of milk, do up halters or hold the steering wheel before I finally broke down and quit the barn. My life for the next year or two was spent getting my pain levels back to tolerable, most of the time. About four years in I am finally feeling good most of the time, though I am still always in pain (24/7/365) and I am still always exhausted.
MRIs, Lyme tests, blood, ect all came back clean. I had the same symptoms you are having, minus the weight lose. Turns out it was fibromyalgia, or at least that is their best guess.
Big, gentle hugs to you. I know how frustrating and scary this process is. Keep pushing for a diagnosis. Take the time to rest, as much as you can. Sucking it up is great and all, but not realistic and not something you can keep up long term. Best of luck.
It does sound alot like lyme. Had it since I was young, had the standard two week antibiotic treatment but was diagnosed with chronic down the road. I always feel run down, everything is an effort, and there are days where everything creeks and hurts, and I just want to sit in a hot shower and cry a bit. Its tough because its not well known and the symptoms are vague.
I dont tell people about it anymore, they probably just think I dont sleep enough or am physically/mentally lazy at times. I just hate feeling like they think I am asking for sympathy, or making an excuse. But it does make it a bit isolating.
Its good your reaching out. I hope you find your answers, it must be incredibly frustrating. Dont stop fighting for answers either, yes we all slow down as we age (I hardly consider 26 that tipping point though) but you KNOW when something is right with your body. So glad you found a Neuro who listens, that can be half the battle. At the same time dont ruin the good days by constantly thinking of all the bad possibilities. Ive learned to stay away from some boards or areas of the internet because i begin to obsess with how wrong things can go. (Right now Ive convinced myself the horse has DSLD and am insisting on a ultrasound, vet must thinking im paranoid) Sending big hugs for you!
I’m with color of light, this could very well be endocrine related. I have Addison’s disease, MS and Hashimoto’s, and your symptoms could very well fit, in fact, many people including myself have lyme and fibromyalgia ruled out before we get our DX.
I had the amazing experience of helping a friend get her Addison’s diagnosis last week. She called me in critical condition, had already been in the ER once the week before. She was too weak to walk and stand up for any length of time, her entire body hurt, she’d lost 20 lbs. in 2 weeks. I convinced her to go to the ER and they got her hydrated and ran enough tests to get her referred to an endocrinologist. The best advice I gave her was, when she called for her appointment, to not take no for an answer. They told her the doctor did not have any appointments until March, but she persisted. It took her all day on the phone, but she got in to see him. He did labs, her cortisol came back WAY low, they did an ACTH stim test and diagnosed her with Addison’s the next day. They put her on Hydrocortisone and she is feeling so much better. Had she not pushed she might have spent Thanksgiving in the ER.
I really, really hope you can get some answers. You are way too young to feel so bad.
Take care!
