Avatar universal

Experts are stumped, now what? I have array of weird neuro issues!

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!

Headache triggers:
fragrances are the worst. I wear a mask everywhere and breath through my mouth. (I can literally taste them!)
flurescent lighting
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!
5 Responses
Avatar universal
I apologize if this comes off blunt, but have you considered the normal aging process mixed with anxiety causing some of the things? I’m not saying it is causing all your symptoms. I can relate to a lot of your story; migraines, Endo issues, lower back pain, etc. I’m 32 been dx with BFS and have had CT scans, MRI, EMGs, so much bloodwork and I feel sometimes chasing the answer makes things worse for me. I suffered health OCD and I feel the fixation can make my issues way worse. I tend to be over sensitive to medication as well and refuse SSRI’s. I’m sorry you are going through this and do hope you get some answers or find some relief.
Yes, I have considered that and discussed which portions of a complex problem might be related to aging.  Join degeneration is in that category especially in the lumbar region.  There's no explanation for the rapid degeneration after the initial illness.

I just had MRI of complete spine thinking maybe I have some kind of nerve impingment causing the upper body issues.  That's now been ruled out.  The Lumbar MRI explains most of what's happening below my waist.

Anxiety issue is kind of chicken vs egg.   Are the pysical symptoms increasing the anxiety for is anxiety exacerbating physical.  It's probably both... but that still doesn't explain why I can't feel half my face, why I have migraines for weeks, or why I have painful muscle spasms in areas that can't be explained by a spinal problem.

MS would explain most of this but what enhances on MRI is not in the typical location for MS so doctors have back-burnered that.  Brain wave abnormalities mean maybe seizure disorder but they still can't figure that out either.

It's been several years and I've watched the doctor go through the process of elimination with one thing after another. So far the only they they have ruled out is a major stroke.  Every single one of my symptoms can be related to my thyroid problems but apparently my thyroid is atypical as well.  Just like my back injury being so bad I shouldn't be able to walk... my thyroid is so bad it shouldn't be functioning but is.  Damned medical mystery.

BTW, I am only 57.  Prior to the onset of the initial illness, I was healthy with the exception of the lumbar problem.  Weight was always a battle so thyroid was routinely tested.  I was able to manage it through diet and a lot of excercise and was proud to have completed my first triathalon in my late 40s.  Some joint degeneration is no doubt related to weight training, yoga, swimming and cardio.
Avatar universal
I can totally sympathize with you. I am only 32 and already feel like I’m falling apart with all the things happening. I have accepted somewhat that some bodies have a different “normal” than others. Obviously I am not a doctor and was only trying to comment for support. This forum and message board can be pretty dead sometimes and answers can take a long time.

If you had an MRI of your brain and spine and the doctor isn’t concerned about MS, I would probably put that aside as well. However, if you are concerned see if you have a nueromusclar specialist in your area and bring them your MRI. You can also see if your doctor will do a spinal tap as that can help confirm or exclude MS. My regular neuro is just a headache doctor. When my fully body twitching started, he ordered an EMG and NCV. This came back fine, but he had pretty poor information on what could cause my ailments. So, I went to a top neuromuscular clinic in my area and got much better advice. A specialist who deals with MS all day long will be able to help if that is the case for you or not.

I know it is a bucket diagnoses, but a lot of what you have going on also sounds like Fibromyalgia. My mother has it, and I suspect I do too. Being a male I’ve had a hard time with doctors taking me serious on it. But peripheral nerve hyperexcitibility can cause a lot of issues. The Brain wave thing does sound like seizure issues. I’m surprised they haven’t tried a gabapentin or topamx for that.

Anyway, keep us updated with what you decide, but I would suggest seeing a neuromuscular specialist for the MS stuff.
I had a spinal tap. It was clear.  I have enhancing lesions on my brain but not in the location typically associated with MS. (That's why they haven't included it or excluded it.)  I was thinking because my lumbar spine is so messed and I know that causes issues from the waist down, maybe spinal problems are moving up.  Last week I had my entire spine imaged.  Lots of discs are desicated but radiologist said no nerve impingment.  It's seriously sad when you find yourself hoping you have a spinal issue!

Just to let you know how bad medical care is in my area... I have been going to the same neurologist for 3 years after having two prior neurologists blow me off. This doc has run every test imaginable and they all come up with a little something but no single something.  He referred me to UCLA where I spent nearly 3 hours with a doctor there.  About 9 months later I was back for a 3rd follow up and he went through the same results he has gone through each time and then said he was goingto refer me to UCLA.  I told him I went to UCLA via his referral 9 months ago and he had no idea and then said he didn't have the records.  Last time was even more classic.  I have had a lumbar injury since I was 25. (I'm now 57)  I have gotten to the point where I get all records and images "to go" because they never get to the right place so I'm the intermediary.  I asked about having my whole spine MRI since the symptoms that are known to be related to severe stenosis are moving up. It seemed logical to me that if a pinch spinal column and nerves can cause my legs to twitch and cramp that maybe the same was happening else.  The doc said "why didn't you tell us you had a lumbar injury"  

I swear I'm going to write a book about the stupid things doctors have said and done!

The best one yet almost sounds like part of a stand up but it's real:
Ortho consult for possible lumbar surgery.  I'm in the exam room sitting in the chair.  The doctor walks in and is standing looking at the images.  He asks me if I can walk.  I stand up, walk next to him and say "yes".  He looks and me and asks "are you sure?"  To this day I still don't think he understand why I laughed so hard.

Avatar universal
Jeeze, you have certainly been through the ringer.

Again, I’m no way a qualified medical professional. But, lesions are common in the brain in people who have migraines for a while. That might be why they aren’t ready to rule on MS yet? My Grandfather had a brain MRI and he said the neuro said it looks like Swiss cheese of the white matter. That can happen with migraines.

I really hope they find something for you soon.
I agree.  At least some of my migraines may have been TIAs and that leaves evidence in the brain.  I actually went in the tube last year with a massive migraine thanks to the industrial fragrance on the wall in the bathroom.  I had a large area lit up on the sagital view with contrast.  It was bigger than all the other enhancing areas by about 4x.  I asked both neurologists about it and both dismissed my question.  All I asked was "is that a migraine in action?"  Really irks me to have them just mumble.  um, er, it's nothing.

There's more to the mystery other than MRI.  There's no explanation for "sharp brain waves" or demylination of nerves in my legs.  (I'm not sure but demylination might be aging but I'm still kind of young for all this)

Now I have to consider at least part of this may be psychiatric but wouldn't this drive anyone crazy????  If that's the case, I already know there are no therapists in network since I tried to get help and got an intern that said "try yoga".  I said "OK, dropped into forward fold, moved int down dog, went through warrior poses and said "nope... didn't help"
Avatar universal
I have a similar story, but you need help for YOUR issues. My best suggestion is the Mayo Clinic or University of Michigan. Both are frontrunners in neuro issues and have helped me immeasurably. Here's hoping!
Is there a way to pay for it?  I can't even afford the gas or airfare to get there.
My neurologist contacted them and ran the tests they wanted locally, then forwarded results to Mayo. Because I am in Michigan, it made sense to drive to the University of Michigan in Ann Arbor. Is there a somewhat local hospital that would be an expert? Just because a university is big sure doesn't equate to excellence in neurology. Good luck! For what it's worth, I also know of someone who did a go fund me page to cover costs.
Thanks.  I considered a go fund me page but couldn't bring myself to do it.  I had the same thing done when I went to UCLA.  All the tests locally and then off to the teaching hospital.

Honestly, I'm at the point where I would rather have a horrible definiative answer than the unknown.  They could tell me I'm a psych case and I would say OK, so now what?   Ironically, the psychiatrist I've been seeing for years to manage the PTSD says it isn't psych but it is not helping psych!  (I did get overdosed on  thyroid in this process and that was definitely psych.  Now I know what it feels like to be legit out of my mind crazy)
Avatar universal
UPDATE:  A giant WTF on one issue.  I've known for a while that something as seemingly minor as dehydration can cause muscle spasms and cramps.  I've been making an effort to drink more and add electrolytes to my water.  I started adding more potassium.  There's still some kind of little  twitching sort of like a tens unit on my legs but most of it is gone.

The magnesium causes potty problems (I already have that issue as a side effect of colon resection) so that kind of sucks... but I just eliminated one unknown with something no doctor ever suggested.

Sheesh.  I've seen at least a dozen doctors and they really hate the words "I read on the internet".. well.. this is why reading on the internet is important!

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