Unknown Diagnosis
 

Hello! I was healthy until I was 20 (May 2013). I now have an extensive health history, and I’m wondering if anyone out there has anything similar, or any ideas fabout what I’m experiencing.

I’ve seen a lot of medical professionals and have had a lot of tests done to try and diagnose my condition and treat the symptoms, but no one has found anything that would explain all of my symptoms.

I’m going to outline symptoms that I feel are part of an undiagnosed condition. The goal here is to get insight from the community about what the underlying condition could be. I have:
Chronic leg pain and lack of normal function for a 27 year old: I can’t run; I sometimes have trouble walking on uneven surfaces and trouble biking.
Sensitivity to pressure being put on various body parts: My hip gets irritated from laying on my side. My knees hurt when I kneel, sometimes even on a soft surface.
Trouble sleeping: This is due to several factors, one being not finding a comfortable sleeping position. My muscles in glutes and hips often tighten to a point where I have to get up to make them release. I also have anxiety and my concussion symptoms (at the bottom of the list) that affect my sleep.
Difficulty overcoming simple injuries and strange reactions to injuries: I hit my right knee on a rock in May 2014 and only received a minor contusion, but it became painful to bend my knee and got to the point where I had to use crutches. (Some of the pain was in the back of the leg, not at the injury site). It tooks about 3 months for my leg to feel relatively normal again, but this knee has had more pain and stiffness when kneeling than the left knee ever since then.
My PT showed me a towel rub exercise a couple years ago. You rub a sensitive part of your body with a towel and other objects. I do it on my left calf sometimes, and when I do my toes on my left foot curl in. I’ve also tried it on other body parts, and something typically clenches (feels like the muscle is contracting) and twitches near the area I’ve rubbed.
Relaxing my muscles causes them to twitch a lot.
The clothes I wear sometimes impact how my body feels: I often have more pain in my right hip flexor, outer hip, and glute when wearing tight pants. When I put shorts or sweatpants on instead, my legs feel better- less achy, and they can move more naturally.

*Note: I had all of these above symptoms before this concussion. I don’t want people to specifically focus on the concussion, but I feel it’s important to add to my symptoms because I am not recovering from it. I used to recover from injuries “normally” when I was younger, but that isn’t the case any more.
Post Concussion Syndrome: I’ve had a few concussions in the past where I’ve recovered quickly, but I hit the back of my head in September 2018 and have had concussion symptoms since: sensitivity to light, a “full” feeling in my head, hard to concentrate for long periods of time, can’t look at screens for too long (my wife is writing this for me!), vestibular and vision/ambient vision issues, etc.

I’ve seen neurologists, foot and ankle specialists, PMRs, PTs, OTs, VTs, had various MRIs, X-rays and EMGs. I feel like each doctor is looking at one puzzle piece, but not putting the puzzle together. If anyone out there sees a whole picture, please let me know. Thank you!

Hi tyler123452,

I'm not informed about post-concussion syndrome but based on the symptoms you mention, I wonder if you've taken a close look at your diet? There is a long list of symptoms that are related to various diet deficiencies, and once those deficiencies are corrected the symptoms vanish.

Also, you mention a number of doctors you've been seeing but I don't notice that any primary care doc--usually a general practitioner or an internal medicine doctor--is involved. That person would be the one who could pull together all of the reports and test results from your other medical providers. That doctor would be the one who could help to put the puzzle together. Such a person should have been working with you all along, it seems to me.

Hi tyler123452

What you are experiencing must be frustrating for you.

I don't have any specific ideas to offer you beyond saying that I think that agate has made some excellent suggestions.

Best wishes.

Adding to what agate suggested, you could see what is called here an Accredited Practising Dietitian.

APDs are health professionals. An APD will be able to review what you eat with you and then make suggestions as to how your diet could be improved.

Thanks for the responses.

1. Regarding primary: I do have a primary that is quarterbacking all this. He is a concierge guy that practices internal medicine. Sorry I did not mention that previously. Good suggestion, thx.
2. Diet: I eat pretty well. A lot of vegetables (salads, green beans, onions, peppers, etc). A lot of protein (chicken, fish, eggs, beans, legumes). A lot of healthy fats (nuts, see other items following). Not a lot of highly processed foods (I eat some bacon and sausage, RX bars, that's about it). I buy grass-fed when I buy beef. I cook only with EVOO (Kirkland brand), coconut oil, avocado oil, grass-fed butter. Etc. Based on this, do y'all still think diet could be an issue/it's worth seeing an ADP?

You seem to be paying close attention to your diet. But just in case you might be taking in too much of one kind of food and maybe not enough of another kind, checking your typical daily food intake with a good dietitian might be useful.

It's all too easy to eat good-for-you foods but to get the proportions wrong.