Undiagnosed need help!

Posted by nicosuave @nicosuave, Feb 8, 2022

Hi everyone thought I’d jump on and pray for a miracle that someone might be able to help me. It all started 5 months ago when I went camping. I went camping in Colorado for a full week with my whole family. Not sure if this is why I’m sick but I did a couple stupid things while I was up there. I was around lots of bugs, I drank the river water and ate wild mushrooms on the last day. After that I got extremely ill and have been ever since. I have been puking and pooping blood, my skin burns and I have paresthesias, I am dizzy constantly, off balance and have visual problems. I have been like this every day since then and it has been horrendous to say the least. I am mostly bedridden and have lost pretty much my entire life to this. I have had many tests done and doctors can not figure out what’s wrong. I’ve been to the emergency room many times and admitted to the hospital 3 times. Had tons of tests and almost everything has come back normal except for a mildly elevated white blood cell count and some nutrient deficiencies here and there and positive gi bleed but they can’t find the source of it. I’ve had several mris, colonoscopy, endoscopy, ct scans, eye exam and a couple other things. If anyone has any ideas or could point me in the right direction I would love and appreciate any help please! Thank you!

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pitepalten | @pitepalten | Feb 11, 2022

Can you switch GP?

Sue, Volunteer Mentor | @sueinmn | Feb 11, 2022

In reply to @nicosuave "Thank you! I had most testing done in the hospital and a little at my GP..." + (show)

The best thing you can do to get an appointment at the university, or any large medical center, is to contact their clinical intake department, not through the emergency room. That way, based on your history they can refer you the proper specialties.
It is often helpful to ask your physician for a referral.
Have you spoken to your doctor for a referral?
Sue

nicosuave | @nicosuave | Feb 12, 2022

In reply to @pitepalten "Can you switch GP?" + (show)

I’m sure I could I just don’t want to offend her and I’m not sure if it would help. Would it?

nicosuave | @nicosuave | Feb 12, 2022

In reply to @sueinmn "The best thing you can do to get an appointment at the university, or any large..." + (show)

No I haven’t but I have an appointment coming up in a few days and I can ask her to refer me to the university! Great idea! Thank you!

pitepalten | @pitepalten | Feb 12, 2022

In reply to @nicosuave "I’m sure I could I just don’t want to offend her and I’m not sure if..." + (show)

Don’t know. Getting a second opinion could help. I wouldn’t worry about hurting someone’s feeling. It is your life and if she hasn’t been able to help maybe someone else can.

pitepalten | @pitepalten | Feb 12, 2022

In reply to @pitepalten "Don’t know. Getting a second opinion could help. I wouldn’t worry about hurting someone’s feeling. It..." + (show)

I changed my GP. They are both in the same practice. I prefer the one I changed to. If I hadn’t liked him I would go somewhere else.

stevegrinstead | @stevegrinstead | Feb 13, 2022

In reply to @nicosuave "I’m sure I could I just don’t want to offend her and I’m not sure if..." + (show)

Don’t be concerned about offending her.

nicosuave | @nicosuave | Feb 15, 2022

In reply to @stevegrinstead "Don’t be concerned about offending her." + (show)

You guys are right! Not wanting to offend someone when I’m this sick shouldn’t matter! I’m going to ask her for a referral to a new doctor! Thank you!

nicosuave | @nicosuave | Jun 17, 2022

Hi everyone! I am still dealing with an undiagnosed systemic illness for going on month 9 now. My symptoms are diffuse burning/paresthesias, vision problems/sudden floaters, dizziness/balance problems, curling toes when walking, mottled hands, constipation alternating with severe diarrhea and vomiting with sulfur burps, gi bleed, very odd looking/pale stool, diffuse joint aches and lower back ache, limbs fall asleep easily, constant tachycardia, motion sickness, yellow nasal discharge, left ear whooshes, arms/legs throb and intense fatigue. All symptoms are every day nonstop and worsen with any activity even something as simple as standing and walking a few feet. I have had dozens of tests and have seen over 20 doctors so far and I finally have a couple clues but still no answers. My potassium is chronically low, my calprotectin levels/gi inflammation is 430 but negative for chron’s and colitis and I had an emg which showed an absent sympathetic nerve response. I have been unexplainably sick for 9 months now and I don’t know how much more I can take. It is debilitating and I’ve been bedridden since the day this happened. If anyone has any ideas of what this could be or what to do next I would really appreciate you and would be forever grateful. I’m 27 with a wife and 2 kids and I really need someone’s help. Thank you!