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My Mysterious Illness
I've been trying to figure out what is wrong with my body for over a year now. I have been posting this on a number of websites to try and get some answers let me know if something comes to mind:
"I'm a guy. January of last year I was changing a sink out in my kitchen when I started to get unusually tired and dizzy. It occurred to me that I may have been breathing in something that was causing me to become asphyxiated. I immediately started searching for a cause and found it to be (not a cleaner or chemical under the sink, but) the gas from my stove. I hadn't even smelled it. I shut it off and ventilated the house, but the damage was done. About 5 hours later my heart rate spiked, adrenaline felt like it was being forced into my body and I started shaking. Then it stopped as fast as it all happened, my brain became super fuzzy and hazy, and I lost all strength in my limbs. I collapsed on all fours and lasted about 1 second in that position. I just remember feeling so drained that I didn't care what happened next as long as I was able to sleep. I felt like I might even die there on the floor. I felt like I was about to lose consciousness when suddenly I felt normal again. This all took about 30 seconds. My vision flashed a few times during the night, and sleeping was difficult. Scary as it was, this was nothing compared to the next several months.
The next day I called out of work because I couldn't form a sentence, I was starting to have sensory sensitivity and I was feeling dizzy almost all the time. These symptoms grew exponentially worse by the next week. I had curtains that blacked out all the light in my room, and that's where I stayed all day every day as long as I could. Even the glow around the curtains would send me through the roof. I refused to move as any small movement made instantly made me feel nauseas, regardless of whatever I had eaten. Just someone touching my bed would make my whole world spin. Any contact I had with the outside world was done with my phone. I used to have it on the brightest setting, now I had it at it's dimmest, and even that was too much sometimes. If I wanted to text, I had to do it in portions and I would cover one eye to reduce the amount of stimuli. (If I winked one eye shut it would make me dizzy, so I needed to cover it.) The stimuli didn't cause me pain as much as it did discomfort, if I had to compare it to something I would say it was like being next to a gunshot. It doesn't cause you pain, but the noise is highly uncomfortable and your body will try to do anything to reduce it. But you would have to imagine that gunshot being a continuous noise, not brief.
This was my life for 3 months. As a 28 year old, this was highly unusual and was absolutely unbearable at times. There were times I wanted my life to end so badly, but I knew that if I moved I would throw up. It was literal hell on earth. The worst part is, I developed what seemed to be seizures. The less sleep I got, the more seizures I would have. The more seizures I would have, the less probable it would be to get any sleep (because your body jolts and it wakes you up). At first my neurologist thought that they were Juvenile Myoclonic Seizures, but further tests showed absolutely no signs of seizure activity whatsoever. The doc had no explanation. I have been to all sorts of specialists since then and no one has been able to find anything wrong with me. It was only after my 3rd month of going through this that an extended family member suggest that I try a hyperbaric chamber. That was the most daunting car ride of my life, as currently, a 10 minute car ride made me want to throw up, and this was going to be a 5 hour drive. Somehow with dramamine, pepto, and hope, I made it that 5 hours and got in that chamber. Lo and behold, the first treatment had a significant effect on my body. The seizure-like episodes dissipated and I was able to sleep for the first time in 3 months. We did about 5 more treatments, and now about a year later I am feeling normal again. However, some new symptoms have arisen.
I can no longer work or exercise much. If I jog, I can only go about 40 yards before I feel like I am going to pass out. If I do run, I have to lay sprawled on the ground for 45 minutes upwards to about 3 hours before my body can fully recover. That, and my digestive system is all out of whack. I can't eat very many dressings or sauces now. Peppers and pasta are a no go, though I can eat them if I really want to and work through the pain. But if I eat too much of this stuff, my guts feel like sandpaper. Anything that goes in after that, will hurt regardless until I heal. I had a specialist look at that too, and they found nothing irregular. He chalked it up to Irritable Bowel Syndrome, but I was completely fine before the incident. I now need occasional antacids to help with the pain. Been trying some probiotics which help a bit, but the condition still persists. I also have to watch how I sit, if I rest with my back against something or sit my butt/legs on something hard, I start to feel like I'm going to pass out again.
Does anybody have any advice? Do you know what this is? Have you gone through something similar? Or do you have some decent resources that I can look into? Any help would be appreciated."
As an added note: I feel like this has something to do with my blood which is why I posted this here. But hopefully I can get an answer either way. My insurance will not allow me to go to The Mayo Clinic and I feel this is my last resort.
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@z4pper as a last resort, it is not uncommon for people to post to online communities, like Mayo Clinic Connect. Certainly members here cannot provide a diagnosis, but perhaps share similar stories to help you research your issues and work with your doctors to find cause and cure. Here are a few discussions that you may wish to read to begin your investigation.
- Asthma like symptoms after engine fume inhalation https://connect.mayoclinic.org/discussion/asthma/
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/
- Autoimmune mystery https://connect.mayoclinic.org/discussion/autoimmune-mystery/
- 2 years sick, nauseous and dizzy, no answer, please help. https://connect.mayoclinic.org/discussion/2-years-sick-no-answer-please-help/
- Feeling awful for 7 months and doctors don’t know what’s wrong https://connect.mayoclinic.org/discussion/feeling-awful-for-7-months-and-doctors-dont-know-whats-wrong/
- IBS, CFS, or autoimmune https://connect.mayoclinic.org/discussion/ibs-cfs-or-autoimmune/
Let me know if you'd like your post to be moved to any of these discussions.
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1 ReactionThank you for the info! I appreciate the effort you took in looking for these links! I think I found one that's on the button as a result. I think I will keep track of that one. I appreciate the assistance!
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2 ReactionsGlad that helped @z4pper. Would you like me to move your original post to the other discussion?
@z4pper Welcome to Mayo Connect. I read your post in the other group, and wanted to give you some thoughts. Have you considered seeing an environmental specialist, who may be able to link your issues to an exposure you had? Something that just came to my mind as I was reading your post, was the possibility that in the effort to change out a sink in your house, you may have stirred up some mold or something in the environment that has not been remedied. Do you think that might be possible? I know that sometimes in older housing there can be issues that lie dormant for a very long time. Or something like hantavirus from rodent droppings could even play a part in all of this. Even something in the environment around your house, like fields that have had a change of crops or insecticides, or changes in your use of cleaners whether it be laundry or household. I hope that you are able to come to some conclusion of what is causing all these issues for you! Will you please get back to me and let me know what you find out?
Ginger
I have not, thanks for the info!
We did originally think that perhaps it was a mold as the sink was pretty gross. However, after many appointments and running around the symptoms seemed to be pointing more toward TBI. But the brain scans showed no signs of trauma. This led doctors to believe it may be blood related, but any tests we did there came back normal. I am convinced that it is something blood related but it may be on a smaller scale than what normal tests can find. If worse comes to worse, I may just see if I can get a blood transfusion. I have also done an allergy panel and nothing too crazy came up that we didn't already know about. No parasites, no fungi, and no physical abnormalities were found (ie cancer, tumors, etc) I am convinced that it may be some sort of anemia.
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1 Reaction@z4pper Has an infectious disease specialist, or environmental specialist been on your case, yet? There are tests they can run. If you are renting or leasing the house, and it turns out to be something on the premises, your expenses might be covered under the property owner's insurance policy.
Ginger
Good point! I'll have to check that out!
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1 ReactionDecided to jump back on here to update anyone who was wondering what was happening. I found out what was causing my illness.
I went to a research study, every specialist under the sun, even did acupuncture and oils because I was at my wits end. No one had answers. Eventually I couldn't eat anything and at 130lbs I wasn't able to maintain my weight. I lost 20 lbs and looked like a skeleton. I ran out of answers. Around the same time, a family friend had a daughter who was 21, she had an odd occurence where her brain reverted back to a 3 year old, and she was unbable to communicate or function like a 21 year old anymore. They went to a functional medicine doctor and he found the problem and she regained her faculties. She's getting married in a couple months.
I was put in touch with him and within a month he found the problem. 4 years of doctors scratching their heads and everyone under the sun suggesting it could be ringworm, and this doc found my answer in a month! Turns out I had no autoimmune disorder, no parasites, no mold, no dysautonomia, but rather a genetic problem. MTHFR they call it. But I also had another overlapping genetic problem, the snips we looked at had problems in all sorts of different areas in my body. According to him, I hit the worst genetic lottery jackpot he had ever seen.
Basically, my body cannot process folate. It also has problems producing cortisol and detoxifying it's system. These produce dramatic trickle down effects which means, my body isn't getting the oxygen, the hormones, or the nutrients it needs to function. And all the toxins have been building up over a long time. We've started supplements and I've already noticed an improvement! Hopefully this is a great start to getting back on track!
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2 Reactions@z4upper, Glad you are making progress with your diagnosis., but it is not great surprise. Every living body has billions of variations (variants) of genes which send their lives off in different directions. Finding a team to diagnose and treat them can be the most difficult part of the whole stream. I am finally finding my group of variations to deal with, centering on a family systemic cancer which even Mayo told me was not there unless I had $7000 to spend on it. Much of this is Multiple Myeloma, >Amyloidosis, Gelsolin, >Prion, >etc. It can be traced to generations and events of long ago, certainly as far as the Vikings, the Samurai, Henry II of England, Portuguese, South Africa, etc. Then add my radon infested home, working years in cattle, Living and working downwind from radiation labs, traveling around the US, Canada and Mexico, spending enormous hours visiting and working with my sick folks in their own homes, hospitals, working as an EMT, bunches of physical accidents, and so on. So celebrate that you are learning and expanding your horizons. And let increasing your own knowledge of yourself be one of your chief lifetime goals. oldkarl
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1 ReactionWow. I'm so happy for you! My 32 year old son has 22q but in the last few years multiple lymph nodes have begun swelling and increasing in size. We haven't been able to find anyone with answers. We are frustrated and he is very depressed. I can't even find where to start looking! Drs run test after test and each pain complaint turns into another swollen node. Anyway, Maybe there's hope. If you found a doc maybe there is one somewhere for us.
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