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Mystery illness for 12 years. No doctors can figure it out.
I want to preface this by saying I know that nobody here can diagnose me, but that isn't why I am posting. It is more me just wondering if anyone has had a similar experience because the last 12 years have been a very lonely existence for me, as I feel like this mystery illness robbed me of my 20s and 30s.
This is going to be long, so bear with me. In 2013, I had a few months of really bad constipation. No matter what I tried, it never seemed to help me go as normal. Then, in December of 2013, I had a root canal. I remember after the visit feeling as if I had a cold. I put it down to the time of year. Not long after that, I found out I was pregnant.
During the pregnancy, I felt very off. Overhead lights in stores looked really bright to me, and I just felt unwell in general. I assumed it might be normal, as I had never been pregnant before. A few weeks later, I miscarried, and more symptoms started popping up. From there, I went down a rabbit hole. I ended up having the tooth with a root canal removed, thinking it might fix my issues. Unfortunately, it did not.
Throughout the years, I received the diagnosis of mold and lyme. Some doctors said it wasn't Lyme and was mold, while others said it was mold and wasn't lyme. I did treatment for both, with no improvement in symptoms. Due to money, I haven't really sought out other help because a lot of doctors are so expensive, but I have basically lived with this mystery illness for all of these years with no hope or answers. Some days, I am convinced I am slowly dying and will never ever be the same again. Heck, even if I got 60-70 percent better at this point, I would be happy. Here comes the laundry list of symptoms, which has gotten longer over the years:
Constant brain fog. It is 24/7. It never goes. It feels like how you feel when you are drunk. Just not fully in control and a bit slowed down. My head never feels clear, just constantly toxic. Light sensitivity, Terrible migraines, A swaying sensation (gets worse with more vigorous movement), and Awful gut issues. Constipation, bloating, stomach pains, acid reflux, stabbing sensations all over the body. They really hurt. I also get burning sensations and pins and needles all over my Hands/feet/calves, cramp really badly, as well as twitching all over. Also quite a bit of leg pain. Dry eyes and mouth, muscle and joint aches Little itchy bumps - often come up after I have eaten something that my body doesn't seem to like Hair loss Nausea Sweats Up and down temp (99.5 to normal range) Excessive thirst that never feels satisfied Frequent urination Painful periods Numbness Knuckles can turn red with exertion, vertigo, tiredness, sometimes I wake up feeling panicked with heart beating fast Palpations
That's all I can think of right now, but I am sure there are more symptoms. Thank you to anyone reading this.
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Hi Emmie,
How terrible for you! All these awful symptoms for all those years. I'm sure you've tried everything like eating properly, drinking plenty of water, trying to get enough rest and all the medications the doctors have prescribed. Are you near the Mayo Clinic? They might be the best place to go for help with all of their expertise.
The other thing I would suggest would be to ask God for help. Pray constantly about your issues. God made you and he can fix you! He's there for us. I'll say a prayer for you also.
I wish you the best.
PML
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8 Reactions@emmie89 hi Emmie, I have Fibromyalgia. Much of what you are experiencing sounds like my Fibromyalgia symptoms.
I believe a Rheumatologist can make the diagnosis.
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8 ReactionsWhen your symptoms are plugged in to see what AI comes up with - vestibular migraine and Glutamate Excitotoxicity come up. Not sure if this is helpful. Here’s a few of the links that were offered with more info about these:
https://my.clevelandclinic.org/health/diseases/25217-vestibular-migraine
https://pmc.ncbi.nlm.nih.gov/articles/PMC7973850/
https://my.clevelandclinic.org/health/articles/22839-glutamate
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7 Reactions@emmie89
I’m sorry to hear of your suffering. I’m not sure of the specialists you have seen but based upon your symptoms, I would get tested for diabetes and thyroid dysfunction by an endocrinologist plus check full iron panel. A neurologist could check neuromuscular function with EMG/nerve conduction studies and test for small fiber neuropathy with a skin punch biopsy. They can also do MRI of head for headaches.
Have you seen a gastroenterologist and had endoscopy and colonoscopy?
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7 Reactions@emmie89
P.S. I am so sorry for the loss of your pregnancy due to miscarriage. I hope you have a good family/friend support system and can get counseling to help you cope with your chronic illness. It can be very hard and I can relate with trying to find answers to mysterious symptoms. Don’t let doctors dismiss you or make you feel like a hypochondriac. You know you and your body best. I had a female doctor make me feel I was a hypochondriac (and put it in her medical notes) when I really had a cervical spine spinal cord flattening/compression injury causing a myriad of symptoms throughout my body and caused daily headaches/tinnitus.
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8 Reactions@emmie89 I'd like to welcome you to Mayo Clinic Connect. I hope you do find the support you are looking for here and others who have similar symptoms will respond to your post.
I have heard from others including some here on Mayo Clinic Connect who have a long list of symptoms for many years with no clear explanation. It sounds like you have tried your best to work with the medical specialities who could help you figure this out and provide you with a treatment plan. If this were me or someone from my family I would encourage more exploration. I understand from what you've shared that cost and finances re a concern so that limits medical practices where you would need to pay. in cash. I have a very attentive primary care physician who listens and problem-solves with me. She is very willing provide referrals locally or outside our area which is rural and does not have many specialty options. Do you work with a primary care provider who has stuck with you over the years? Or if not, do your friends or family have recommendations for finding such a person for your care? I recall many years ago having a conversation with a primary care provider (now retired) who said to me one time "You are the expert with your own body" and that felt so good and empowering to me. I wish that for you.
You didn't ask for recommendations but I wonder if you'd like to refer yourself or ask your primary care provider to refer you to Mayo Clinic? Mayo Clinic gets too many requests to be able to accommodate everyone who asks however their providers are so good at complicated medical cases like your own. If you do consider Mayo Clinic I'd recommend that you first contact the Mayo Clinic you wish to go to (Minnesota, Arizona, or Florida) and ask if they take your insurance.
Here is the information:
Request an appointment at Mayo Clinic (for all locations):
-- https://mayocl.in/1mtmR63
Check your insurance with Mayo Clinic:
-- https://www.mayoclinic.org/billing-insurance
Do you have family support?
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7 ReactionsPlease also consider leaky gut syndrome. Some drs don’t believe in it, but I had a wonderful pcp who did and had it himself. He said it had caused neuropathy on the soles of his feet, among other things.
From what I understand, leaky gut can cause most or all of the symptoms you described.
Please let us know how you’re doing.
Something you can do right away if you haven’t is get started on a high quality probiotic.
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3 ReactionsHave you lived/worked in the same place all this time? It could be toxicity from outside-like a chronic gas leak or some kind of irradiation. Just guessing here. I have leaky gut syndrome too, and yes I have to handle it myself because it's not generally recognized. Your symptoms seem to go beyond Leaky Gut.
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2 Reactions@emmie89 This just sounds like too much for anyone to handle! But I know that you need answers and quickly.
What I think you should do first is (while applying to Mayo Clinic) get your health insurance settled. A social worker in one of the medical practices should be able to help you .
Can you call one in the morning?
Then you should start a ring binder or spiral notebook. In this journal write down what has happened to you over the years. Put lab reports, doctor’s notes, etc. in the back of the journal. Plus anything else!
Getting health insurance (Medicaid) is the key to. Getting some doors opened.
Can you do all this?
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1 ReactionHello Emmie,
There is a lot I could write about a " alternative " Dr that might give you some pointers. He is very expensive so I did not follow thru, but I was very impressed with his work. I researched him thoroughly and spoke to a patient of his who spoke highly of him.
Its too complicated to explain here but one of his cases on utube is a little similar to yours.
If you would like to PM me to my email i'll happily tell you more...his approach is very unique but highly effective. I would not suggest for one moment you visit, his treatment plans cost thousands, so I couldn't go but I think this particular testimonial might give you some credible help. I had to do a lot of research to understand how he diagnoses people and to accept he was truly credible.
I think the testimonial of how he helped a little girl could be of real value to you but its too detailed to explain here.
He was featured on TV and recognized for his unique but effective treatments.
Pls email me, i' ll happily give more details.