How do you get help for anything else once you've been diagnosed with a TBI?
 

TBI and PCS has many symptoms that overlap with other diseases/disorders. So, let's say one of us develops a liver disease or some other type of disorder that effects cognition, gives you headaches, makes you dizzy, etc. Once you tell the doctor you've suffered a TBI, they don't bother looking into any other possible causes. The blame goes straight to the head injury!

This is the problem I'm having now. I never recovered from my injury, it has just gotten worse over time. My good days are few and far between, and getting worse all the time. My bad days are pretty much 90% of the time and they are becoming more and more intense. When I mention this to doctors, especially ones at the ER, they immediately tell me it's common symptoms of TBI.

I just want to kick them in the face.

Luckily, my PCP is willing to work with me and agrees there is a problem if no improvement has taken place in over a year and a half. I'm finally going for a full panel of blood/urine tests. I am effin ecstatic to finally get some help.

So, for the people out there who have trouble getting help from their doctors due to a diagnosis of TBI, concussion or anxiety....

I feel your pain.

I would also have to say PCP is the best place to look for something. My PCP denied at first that I had post concussion syndrome and checked for everything else (This is how she got my other diagnosis of hypokalemia (low potassium)). I lost so many minerals from being nauseous, but potassium was the one I lost the most of and it impacted me severely. The low potassium levels were making me more lethargic, I ended up going to the ER at one point getting an IV due to this. 3 ER trips I ended up with due to my brain injury. The medical bills added up and even though I wasn't getting any better, they took care of me in ways they could. The last ER trip after urgent care told me I had anxiety from post concussion syndrome, I never knew what or how anxiety felt but that day I knew after talking with a friend about it. I was rushing to hospitals and it was such a scary experience, I thought I was going to die all the time due to the panic attacks. 2 months later, even though I still have anxiety, its not as bad as it was. I now go to therapy and my PCP takes care of me making sure all blood work is done every month to check to see if electrolyte levels are good and everything looks good. She also checks my vital signs and does the neurological testings. She says I am improving every month, my pupils are back to normal, which surprised her. Today after 3 months, I still get occasional nausea, anxiety, sometimes a panic attack, insomnia, loss of appetite, and mornings well are horrible as usual. But anyway , good luck, the PCP will find if there is another problem, they are good at that. :hug:

I wish I could get a malpractice on my PCP and a local ER!!! ******* I could not even get a diagnosis of a TBI!! I feel this was the worst scenario a person could go threw to get nowhere!I am VERY THANKFUL I AM STILL HERE TO GET THE REAL DIAGNOSIS My PCP said soft tissue of neck!LMBO!
And tried to get me hooked on pain killers and I refused after 2nd visit!

I understand that my situation is a messy one so it was VERY HARD to get any answers as well....I even had Neuro #1 charge me $500 to not even look far enough in my ear to see balance issue...he washed his hands with the soft tissue thing*....SMDH

I have been fighting non stop for over a year and some months to even get this diagnosis and my Neuro#2 is the greatest EVER!

**Now I need to recharge to fight to get better whenever this process starts** Whenever all these doctors I see finishing dotting their i's and crossing their T's:mad:

Wish you a smooth ride!

keep steadfast...
 

I too have a similar situation and have been seeing multiple doctors for multiple issues. Before the accident I barely went to the docs but for a physical. I have some really good understanding docs mixed with a few that seem I am nothing more than a number but they still have me come back to see them and charge me$$$. I dont want to go from 1 doc to another because that will be interpreted as .... (you get the point) I think upper body injuries have a multitude of effects on your body covering the spectrum. Many of the "health care professionals" are in their careers for the prestige and money but just a handful really show empathy toward their patients.

Did you have a sleep study?? If not see if you can get one . The sleep issue s are probably making my overall cognitive issues worse or masking the specific nature of the deficits. I am also not going into any more detail with the docs I see other than questions relating to their expertise. Example dont tell the neurologist all about any specific orthopedic\PT issues and vise versa. They tend to make random incomplete notes and in the end the main issues you are expieriencing gets more blurred

My PCP has been a godsend. If not for him, I would have thrown in the towel long ago. One good provider on your side beats having a handful of specialists that keep tossing you around to each other. Find someone who believes in you, who will help fight this fight with you!! I wish you well and hope that you find the answers you are looking for :)