diagnosis please

Question

My 20 y/o son has been seeing doctors for almost a year now with no conclusive diagnosis & now he has fired his psychiatrist for calling him a liar about his most recent symptom, no conscious control of leg muscles, soft tissue numbness bilaterally waist down leaving him w/c bound. PCP also seems to doubt him. As a mother & lpn I had to find out for myself so watched him while sleeping. He has muscle cramps & spasms while asleep similar to what I've seen in others who are paralyzed. If he's lying, he's doing it in his sleep. He had some lightheadedness, migraines & abdominal issues as well as anger problems in high school after having meckel's diverticulitis removed @ 14 y/o. Had passed out possibly hitting head 2-3 times b4 diagnosed with Meckel's. @ 18 he injured right knee in accident, was ill with migraines & fevers most of winter, then passed out hitting back of head suffering complete memory loss which returned slowly over several months. Not all of memory has returned even now. Last Nov. began having rt knee nerve pain radiating down to foot. Orthopedic specialist gave cortisone in knee eventually causing numbness knee down. Then bone pain began, feeling like marrow is boiling, which spread over several weeks to every bone head to toe making concentration difficult. Soft tissue numbness has come & gone & come again several times. Now he complains of SOA following cold symptoms. Cold gone. SOA not. Bone pain continues not well managed with nonnarcotic meds but don't want narcs if can be avoided & dr won't prescribe anyway without firm diagnosis as he is young, white male with depression. Who wouldn't be depressed? Has seen chiropractor, orthopedist, neurologist, ophthomologist for vision disturbance lt eye,& psychiatrist, had multiple tests showing nothing significantly wrong. Even I have doubted him @ times but not now. There must be something organically wrong but cannot get more tests until can get disability d/t cost. Can't get disability d/t no significant diagnosis. Can't get diagnosis without more tests. He can't work or go to school d/t pain, lack of concentration, & w/c confinement. Can't get public assistance without disabling diagnosis. Can't be carried on my insurance unless disabled or in school. (W/c bound but not disabled?!?!) He's thousands of dollars in debt & currently being sued for payment he doesn't have. I can't pay it, either. What can be done? How can we get a diagnosis & treatment needed? How can we get his drs to take him seriously? Just recently heard about POT syndrome. Could this be it? His PCP has never heard of POT syndrome, either, & quite frankly it sounds like the new catch all diagnosis. Need answers soon. Please help if you can. This affects the whole family.

Gina04 · Accepted Answer

I would think the neurologist would be the one to press for answers.  I think what I would want ruled out first would be MS, ALS, TIAs and seizure activity.  If he hasn't had one recently, I would see about having an MRI done.  The neurologist can check for signs MS and TIAs with this.  I would also have an EEG done.  Not all seizures are grand mals like we see on TV.  There are many different kinds and they cause all sorts of different things to go on with the body.  Having the EEG done would help to rule this out.  I'm not sure what all testing is done for ALS other than a muscle biopsy.  I would ask the neurologist specifically about MS, ALS, TIAs, and seizure activity and see what you can get done.  Since insurance is an issue, I would try to get him in to the university health system that is closest to you.  A lot of times they have some sort of 'insurance' that is just for their system.  Even if they don't, they will likely just bill you and as long as you pay them something, even just $5 a month, they can't really turn you over to collections.  Depending on where you live, I may be able to recommend some good university systems.

KMathurMD · Answer

Hi 
Welcome to the MedHelp forum!
I am so sorry to hear about your son. There are a few things that need to be tested: low testosterone, low calcium, magnesium, low VIT D, low Vit B12, and some conditions ruled out such as chronic fatigue syndrome and fibromyalgia. Recently he also appears to have developed restless leg syndrome. This needs to be confirmed by a sleep specialist. Often there is deficiency of iron, magnesium and folate. Just a few thoughts as several tests have been done and nothing found. Hope this helps. Take care!

Gina04 · Answer

I'm not sure how old the youngest ALS patient is but, in doing a quick search, I found a 24 year old and a 21 year old diagnosed with it.

The TIA symptoms should be the same...numbness, lightheadedness, etc.  I don't think all of his symptoms would be related to this and he probably isn't having TIAs, but since he does have some of the symptoms, I would want to make sure that wasn't a factor.

I would call the local university health system, just their general number.  Tell them your son's insurance and financial situation and explain some of what is going on.  Ask if they have any kind of financial assistance program that he might qualify for.  You should be able to get him in with a PCP type doctor there.  He shouldn't need a referral from his current PCP unless you just want him to see specialists at the university and not switch to a PCP there.  I'm not familiar with KU but have been seen in university systems in a few other states.

Praying that you get some answers and treatment soon.

ksnse · Answer

Thanks for commenting. Medicaid won't pick him up until he is officially declared disabled. At that point though, it will pay all covered expenses back to the date of his original application. Also, the state lawyers can't represent him with to get his disability since his medicaid case has been closed so he is trying to get alternate representation. Its a slooow process. Pray is practically the only productive thing we can do. We have many "righteous men" praying for him & the family. I know that God has a plan & I trust Him to know what's best. That's is the only thing getting me through this trying time. I only hope my boy doesn't lose faith in his youth. He can become so discouraged at times especially when the doctors don't take him seriously & seem to have stopped searching for answers. I will stay the course though, even when my boy gives up momentarily. Thanks for the encouragement

ksnse · Answer

Thanks for taking the time to comment. Blood test in Feb showed no demyelination but I know there are other tests for MS that haven't been done but neurologist didn't think necessary. MRI with & without contrast of head & neck in Feb also, & compared to MRI following head injury. It showed nothing significant. EEG done after head injury showed no abnormalities. Please explain why ALS is possible at his age. He's so young. Do TIAs have different symptoms in the young adult than the elderly? I have considered university health maybe through University of Kansas. How does one get into that system? Does his PCP need to recommend him? She seems to think all his symptoms are conversion disorder. So does his neurologist. And his ex-psychiatrist thinks he's lying. I don't doubt some of this may be conversion disorder as he is under much stress but it doesn't make sense that with treatment his sight & some of the soft tissue numbness improved but the bone pain got worse followed by the soft tissue numbness returning with paralysis. I believe the loss of vision disturbance & numbness are stress reactions to the pain & uncertainty & lack of control in his life right now. But I don't see how all of the symptoms could be psychological. It just doesn't fit. Any help you could offer would be very appreciated. Do you know if KU has an undiagnosed disease program?

Rhi315 · Answer

I'm sure you have already tried this, but I'm going to suggest it anyways....what about medicaid??? State insurance. It pretty much covers everything. If all else fails, I find that praying works quite well. I don't know your religious background. But I know that it works for me. Good luck.