This is my first post and am giving it a try out of sheer frustration. I have been to several neurologists, a teaching hospital and every form of alternative medicine imaginable and still zero explaination for relief. If there is a character limit I will post second message.
- low back injury 30 years old so always had back pain and flair ups
- non PMS related migraines starting in my late 30s. (now 57)
- About 6 years ago I moved into a new rental. I got sick within a week. Non-stop, massive migrains, sinus issues, puffy face, red, crusty eyes... it was like a massive allergic reaction. I found out the source and moved out. It was a leaky air conditioner sitting in a pool of water that smelled like a sewer. I moved out and almost all the symptoms cleared.
- Fatigue set in and i started gaining weight. Diagnosis: Hashimotos. Put on Synthroid. Didn't work. Put on Armour, enough improvement to keep it that way.
- 2 years later I started a new job and had an closed office. A couple weeks into the new job I noticed my office had a funky smell. I thought coworkers were punking me by going in and farting when I stepped out. Then I talked to someone who had been there for a while and she said that office had apparently been built over what used to be some kind of shower and there was a drain underneat somewhere they had to periodically clean out. I got sick. It turned to pneumonia. I coughed so much my back slipped more and I got a couple of bulging discs. I tried to go back to work and when I did, they had air testing tripods set up in that office and were moving people out. It was the training section for new employees and I was told they were moving it because they had extra space and they didn't want to renew the lease on that part of the office.
-. I lost that job but did eventually recover from the pneumonia.
- I woke up one night thinking I heard thunder. there wasn't any. I had a severe migraine. the right side of my face had a tiny droop and didn't feel quite right. I went to urgent care the next day when it didn't resolve and was tested for stroke. No evidence of major stroke or bells palsey. Referred to neuro.
-. Complete neuro workup. Knowns: sharp brain wave forms, demylination in left leg, bilateral carpel tunnel, bilateral cubital tunnel. Enhancing areas of brain on MRI but not in locations typical to MS. "deep white matter" and possible "TIA" Thyroid more out of wack.
- started having twitching in lower legs and I attributed it to the back injury. That worsened and turned to both twitchind painful cramping below the knees. Then it started moving up.
-. Now I am at the point where it constantly feels like there's a blood pressure cuff on my arm. I get random and painful cramps in both legs, lower abdomen and side of abdomen, mid-back and hands. (I am drinking more water and using electrolites to eliminate that possibility)
- Migraines are getting longer in duration and only resolve with Relpax. in the past 45 days I have had 5 without a headache. Short term memory is shot.
-. I am on my 3rd round of brain MRIs with and without contrast. The results are not back because they did the test wrong but the weirdest thing... the MRI machine makes me twitch and then later I cramp up BAD!!
-. My doctor is stumped and/or doesn't give a crap. I have been sent to a teaching hospital and was told enhancing areas in brain are not in location typical for MS although they didn't rule it out. Doc just said "dont want to go down MS road" Only suggestion was calcium channel blockers which have already been tried and produced only horrible side effects... like I need more fatigue when I can barely get out of bed every day as it is.
-. I have been tested for heavy metals, toxics, parasites, etc.
-I have seen alternative medicine practitioners and tried different things with no results.
-. Allergy testing mostly negative with the exception of penacillin
- In the middle of all of this I ended up in Endo but because of insurance change, I didn't get to keep doctor. New endo doc insisted Armour was bad and put me on synthroid/cytomel combination. It was a massive overdose that every doctor recognized but did nothing about. That made every single symptom worse. I can not tolerate the 50mc the new Endo doc wants me to take and when I asked to reduce it he said "that is inappropriate at this time" so I cut it out all together. (I recently talked to a pharmacist at the compounding pharmacy about possible ultra low dose patch and he said they typicallly start at 12.5mc and I was started at 200mc!!)
- I am hypersensitive to almost every drug including every form of narcotic pain meds, all forms of SSRIs, sythroid and it's generic versions, cytomel, every anti-siezure med they tried, calcium channel blockers and things I can't remember.
- Profoundly fatigued and massive weight gain (which didn't help)
- all joints degenerating.. even non weight bearing ones.
- tiny brain tumor that I think is in the lining between lobes? benign colon tumor removed during this process.. that surgery sucked and a year later and there are still a lot of foods I can't eat without consequence!
fragrances are the worst. I wear a mask everywhere and breath through my mouth. (I can literally taste them!)
high-contrast (red/white at Target is an instant migraine)
Too much sensory stimulation (combinations of light, motion, contrast, smells, noises)
Psychologically I suffer from anxiety disorder. Naturally, this is getting worse because I feel like I'm being stalked by something horrible and the not knowning is aweful. It's hard to self-diagnose psychiatric things but I think my personality has changed. I went from being described by my boss as "being able to tell someone to go to hell and making them look forward to the trip" to "inappropriate, abrupt, etc" I thought maybe that was just because I've worked 40 years and don't suffer fools as well but now I'm wondering if it's something else. I've always been polite and patient and now find myself making comments out loud that I might normally just think like being at Costco and having someone block the isle and saying "must be nice to be the only person in the world". I am in pain all the time and it's bad when I have to walk more than a few steps so I only go out when absolutely necessary. (Wal-mart pick-up is a God send and I live in a town where delivery is available from every grocery store, restaurant and other stores)
I was hoping to get into some kind of research program because I'm pretty sure I'm not imagining this stuff (but if i was would I know it?) I am even open to considering this is partialy psychiatric but when I was overdozed on thyroid and actually on the edge of crazy I tried to get help... only to end up with an intern that said "have you tried yoga?"
As you can probably tell by the tone of this post, I'm at my wits end. I'm not a low IQ individual. I can read and digest complex scientific information. (I can't remember the name of anything or where my keys are but I can understand scientific papers and understand at least conceptually what's going on.) It seems the most likely suspect is thyroid but "treatment" makes all symptoms worse. I am also aware that part of it may be early onset alzheimers or some form of dementia. I still want to know!
Doctors have zero interest in listening to my opinion. My personal opinion is this is some sort of auto-immune issue since it started with an illness and got worse with another illness. I used to be one of those people that never got sick. Even when my siblings had chicken pox, if I had it I didn't have symptoms!
I would love medical opinions that do not include unproven science or the latest fad.
Sorry, it's not gluten, leaky-gut or parasites et-al .. I've already gone down that road!