Subscribe to FREE Celiac.com email alerts
Tracy0504 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsNew HereSorry this is so long. Just some back story:
I'm 43 years old and single. Last March, I had to vacate a rental house due to mold and air quality issues. I knew my illness was caused by mold. My friends knew it was mold. Doctors, however, sent me on a wild goose chase that ultimately ended in nothing but my being left with a ton of medical bills. My symptoms were spot-on (no pun intended) with mold sickness (fatigue, weakness, leg tingling, nausea, upper respiratory issues). But docs seem to think mold is imaginary.
When all was said and done, I'd gone to more than one general practitioner, had one ER visit, two Neuro visits, two allergist visits, two CT scans, two MRIs, a sleep study and a myriad of other tests and visits. On the first MRI, a non-specific lesion was found in my frontal lobe. The first neuro brought up the possibility of Multiple Sclerosis that sent me into a tailspin (anxiety wise) and I went to two eye doctors to see if they detected optic issues (no). The neuro then sent me to a nerve study test which was the equivalent of being electrocuted for six hours. And guess what? Results were labeled "inconclusive." Another doctor turned around and acted like I was insane and put me on klonopin (that only made me sicker -- I don't do drugs well). Eventually, with time, on my own, I began to feel better. I went for a follow up neuro last November that showed no change in the lesion. The neuro shrugged his shoulders and said, "Could be MS, could be a brain tumor. Could be nothing. Wait and see." and dismissed me. Wow.
I never fully recovered (probably 80% recovered) but I felt good enough to return to work, the gym, etc. Even so, I started gaining weight without any explanation. In May I wrenched something in my neck badly enough that I was unable to turn my head to the left and if I did, I'd get serious headaches. The tingling in my foot came back. I went to the doctor (same office, different person) who immediately said, "I think you need to go see a neurosurgeon based on my previous MRI results." WHAAT? I declined (120 miles round trip and a huge co pay). She gave me anti inflammatories, which helped, but I never regained full mobility of my neck. My job, by the way, is seriously stressful (most of what I field are complaints) and requires me to sit for 10 hours a day and stare at a computer screen.. That's not helping my neck. The weight gain and all the sitting aren't helping my back. So "some" of this makes sense.
The fatigue started to return about two months ago. Along with it, water retention (for some reason my left leg swells and not my right), the tingling got worse, constipation (a life long issue with me) got worse. Insomnia (again, life long - I currently take Lunesta which doesn't do much) got worse. Sinus issues, worse. Well, you get the idea. Worse yet, I recently got on the scale to discover I'd gained FIFTY pounds since last year. !!!!!!
I made a doctor appointment and since you can only present one or two issues at each 10 minute doctor visit (and I had to wait two weeks to GET the visit), I mentioned a few symptoms and asked for my thyroid to be tested. She suggested a full blood panel (fine) and a future gyne visit (WHAAT?). It took three different girls to draw my blood (one even blew one of my veins). A week and a half later I was called and told the Vitamin D test they sent out showed I'm low (no big shocker since I spend so much time indoors), but my "blood wouldn't work" for the rest of the tests (I took that to mean the lab screwed up). She added, "Since you had an MRI last year you should probably have another one." It's like no matter what I'm seen for there, they're hell-bent on me traveling 120 miles and forking out a $50 co pay. I declined and went to another office.
At the second office, I saw a nurse practitioner and made the mistake of mentioning the insomnia and weight gain first (I've since learned that in a 10 minute visit, you're only listened to for 20 seconds and they're only listening for key words anyway -- and once they hear certain key words, you're done). She ordered the blood tests (everything "normal") but wanted to put me on an anti-seizure drug (??) that would calm my mind and has the side effect of weight loss. I declined.
In the past few weeks, the fatigue and tingling has gotten much worse. I started researching stuff online (funny how doctors hate that we do that but then again they're the ones who force us to). I was shocked to find post after post, site after site, listing my symptoms -- but attributed to gluten issues. Even on one post, the guy angrily said something about his "brain lesion" and my mouth literally dropped open. Wait. There's a connection? More research from me. Reading so much of this gluten stuff (much of it on this site), I feel like I'm maybe on to something. But I'm not sure.
I was a sickly child and have always had allergies (and I remember not being able to have corn products for awhile there). As I mention, I've had constipation for years (chronic -- like needing laxative or enema products on a daily basis). I'm amazed when other people say they've been constipated for days. HOW? When I'm constipated I get a fever, headaches, face pain, fatigue you name it. I went gluten-free about a week ago. A few days ago, I figured I may as well just do an elimination diet while I'm at it, also removing corn, soy, dairy, Aspartame and eggs from my diet. The good news? I lost 6 pounds (probably water weight since the face swelling is less). The bad news ? I feel much worse.
My symptoms (again, some are now worse since going gluten-free):
Severe fatigue and very tired even after sleeping.
Severe brain fog (the kind where you can't focus your eyes or think).
Joint pain (mostly in knees and fingers).
Left ankle and foot tingling
A pinching feeling in the back of my left knee
Neck and lower back ache.
Occasional random muscle aches but not severe
A slight burning or tingling feeling in my left hand (although since I hurt my neck I prop my head on my left hand all the time).
This is all bad enough I've had to take a few days from work in the past month and my days off are spent in bed.
Two days ago, I called the first doctor's office back and made a follow up appointment (the soonest they can see me is Nov 4). You can't talk to a nurse or a doctor ever (they're like the Wizard of Oz) so I left a message stating that I honestly think I have more than one thing going on here (back issues, stress and anxiety, and nutritional issues - maybe even pre menopausal). I stated, "You suggested a follow up MRI. Let's go ahead and get that scheduled so we can rule out anything there. I figured they'd get the MRI done and on the Nov 4th appointment I could present what I learned about wheat and gluten and ask for any direction on that. However, they decided to ignore everything I said and instead left a voice mail stating they want me to just go and see a neuro 60 miles away since this may be MS. And they left the message end of the day on Friday (yesterday) when I couldn't call them back. Dismissed again.
I feel more alone than ever. I don't fit the MS profile (except for having tingling, fatigue and a non-specific brain lesion). I don't fit the Fibrro profile. If it's Gluten or some other allergen, wouldn't I feel better and not worse now? And beyond that, doesn't a gluten-free diet make even MS and Fibro sufferers feel better? I feel like I've been hit by a truck.
I'm at the end of my rope. Add severe depression and anxiety to that long list above. I am all that I have. I can't be sick. I can't miss work. There's no one to take care of me. I just want doctors to find out what's wrong so whatever it is, they can treat me and I can at least have some quality of life. Gone are the days when they just admit you for 24 hours and run all the tests and then come up with a plan. Now they either drag it out or send you somewhere else like they hope you'll just go away. Meanwhile I'm here, barely able to function.
Friends hear me but in response they say stuff like, "Hang in there." or "Good luck" or (worse) "You have the WORST LUCK with medical stuff." I feel like I don't even belong on this board but I have nowhere to turn. I guess I just wanted someone to listen.
- 5 replies
- 792 views