1 million dollar workup and still no answer, 8 months of suffering
Went from active college kid to bed ridden going on 8 months
I’ve had a million in medical care and we still don’t know exactly what is wrong, but one thing is clear something is affecting my nervous system. Here’s a story and I would love to hear any input.
It all started the first week of December, the horror began. I started developing this pain on the outside of my throat and just not feeling myself/ I noticed a lot of muscle twitching. It was finals week so I had to push through this pain to finish up school. I ended up making the deans list so I was pretty happy about that. Meanwhile my pain got worse and I ended up at Bronson ER in Michigan. Doctor said it was probably just my thyroid disease flaring up . So no big deal go on my way and take some Motrin. But it’s started getting worse , and I didn’t know if I’d be able to drive home for Christmas break. I ended up pushing through and making it home. When I got home I went a day or 2 just thinking my pain would go away maybe it was a simple infection. But everything started getting worse. I developed a throat crunching/ tearing sensation when I swallow and some swollen lymph nodes under my jaw. I noticed I was losing weight really fast and that my appetite was gone. And it was on Christmas Day that my pain got so bad we ended up going to the Cleveland clinic. Yea I know what a way to spend Christmas. We spend a week at the Cleveland clinic with no answers but them thinking I’m crazy and I have anxiety. I started having shooting pain in my body that would shoot me out of the hospital bed. I couldn’t sleep for weeks and was in so much pain. After a week of being there they gave up and sent me home, while my nurses cried saying I’m so bad I shouldn’t be able to go home. After leaving Cleveland we knew this journey wasn’t over. I had to be pulled out of school for my second semester, talk about a sad day when my dad had to go get all my stuff out of the dorm. I ended up at a bunch of local ERs, Next I ended up at UPMC and got admitted there. There I started feeling worse, a lot worse. My heart starting going into supraventricular tachycardia episodes going into 170-180bpm and I had the code team rush in my room several times. Talk about scary when they had to put Paddles on me. I had to take medicine to flip my heart back into a normal rhythm. After feeling worse and worse and no answers they came up with the same explanation. Anxiety. I started losing hope because I know I don’t have anxiety and that something is really wrong with me. We went 2 months thinking maybe it’s lymes diseases. After getting released from there I ended up at alliance hospital and they just admitted me for observation. After getting released from there, I ended up at Aultman hospital and got treated with ivig. Which didn’t work and gave me a bad reaction. I’ve been thrown diagnoses like auto immune diseases, POTS ect. But no clear answers that make sense and no cure for my suffering. Mind you I’m still suffering and not any better the doctors come in and say well there’s nothing more we can do for you. So I got released from there. 2 days later I ended up at Akron children’s where they didn’t run any test and just pulled the anxiety card again. While I was there my heart rate reached over 210 and I was spasming out and sweating like crazy. Also I was losing tons of weight, I weighed in at 205 at the hospital and I was 240 while I was healthy. They literally released me the same day saying I was fine. I come home and end up at Salem ER where I don’t remember much but being in the ER. Once again they don’t know what’s wrong so I get sent to Cleveland clinic. I was breaking out in rashes and my heart was flipping between 100-130 back and forth. Obviously there was something wrong. There’s no way you go from a perfect healthy 19 year old, to this without something being really wrong. My appetite is gone, I hardly have bowel movements, my heart constantly goes tacky and raced a lot, all my muscles twitch and spasm, I have this crunching in my throat when I swallow, swollen nodes under my jaw, serious chest pain, and I’m in severe body pain all over, also feel like these internal body vibrations. Mind you when this first started I lost 30 pounds in 2 and half weeks. It’s been going on 7 months and I still don’t have a clear answer. I haven’t been able to drive or do anything for 7 months now! Mind you at first my heart was not involved and now it is which is a scary thing. It’s so sad doctors pull the anxiety card when they don’t know what it is at first and that’s effected my health greatly especially how much my heart is involved now. And lastly my parents and I started to notice my hair is falling out
Update So I had a really bad spell at home, went to brush my teeth and starting feeling really hot and sweaty. I sat down and my body starting going numb. My mouth was completely numb. And I was in a cold sweat, My heartrate went into the 160s and my parents said I was a seizure like convulsions. Crazy scary and I’m back in another hospital
Hey guys this is an update on my story, so my heart has been very high and going into svts a lot m
I’m getting these convulsion like seizures.
And a lot of muscle spasm twitching and burning. Also chest pain.
Still zero appetite and My nerves are going crazy.
My vision has been getting blurry recently as well
The doctors still don’t know the cause..
I’m getting really worried this could be deadly.
In a lot of pain!! It’s hard to sleep
Went to cardio today and I’m on a 3 week monitor.
He wants me to see a electrophysiologist.
I’ve been puking the past 3 days from being in so much pain.
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@johnbishop any help would be great !!
Thanks for the mention @lioness. @aeverett530 I have no medical background or training but did a little searching on some of the symptoms you mention – crunching in the throat when you swallow, swollen nodes under the jaw and it sounds similar to TMJ (Temporomandibular Joint & Muscle Disorders) but I don't know if that could also cause body pain. You may have more that one thing going on. Here's a great video on TMJ: https://youtu.be/9dbFm7YhgGM. There is also a discussion where you can meet others discussing the disorder – Research on TMJ: https://connect.mayoclinic.org/discussion/research-on-tmj/
Here's an excerpt from the link below that talks about nerve pain associated with TMJ… "Can TMJ cause nerve pain? BACKGROUND AND PURPOSE: Temporomandibular joint disorders (TMJ-D) may be associated with the onset of neuropathic pain. … CONCLUSIONS: We suggest that a closer proximity between the TMJ disk and the mandibular nerve could be one of the causes of the onset of neuropathic pain in patients with TMJ-D and neuropathic pain."
Neuropathic Pain in Temporomandibular Joint Disorders: Case …: http://www.ajnr.org/content/30/7/1414
I know you have seen a lot of different specialists and doctors but if it's an option for you, I might suggest inquiring at Mayo Clinic where medical experts work in multidisciplinary teams across different specialties. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
If you are comfortable sharing a bit more, did Mayo give you a reason for the denials, i.e., insurance coverage, couldn't help, etc.?
Denied my case saying they don’t think they can offer anything else…
@aeverett530 Sorry to hear Mayo denied your case What medications are you on now,if I may ask ?
Beta blocker two times a day because of my heart rate and gabapentin
That must be discouraging, @aeverett530. What other plans do you have for getting help?
Eagle Syndrome? Make sure someone checks you for it. There are Facebook groups of individuals with this rare anomaly of the upper cervical spine. Could explain everything
The radiologists have to look for it specifically. They won’t necessarily see it unless they specifically look for it.
Plus it’s been associated with tachycardia, autonomic nervous symptom problems – the sweating and loss of consciousness. You’ll have to be your own advocate.