Healthcare Island

[morganomics]

Hello everyone!

It's been a while since I last posted maybe three years? Jeez, I thought it would be a good thing to return as it can be a bit lonely to go through something by yourself. I live in a frustrating area of the country, I'm only 25 miles from Chicago and Illinois border yet I'm blocked off from receiving any care from a neurologist or a mental health physician. Indiana isn't opening up Medicaid to single males without children or spouses. I'm in the Catch-22 of needing effective help to be fit for employment, but also needing employment to pay out of pocket for the care. I recently took a job that may be beyond my functioning at the moment. I'm really trying to avoid a crisis or breakdown that would lead me to the pointless and unhelpful mental hospital, yet being poor really sucks because you're just froze to your bed. I traveled to NYU in September to see a very well respected neurologist who's mentors include Dr. Oliver Sacks and Dr. Norman Geschwind. They suspected that I may have an autoimmune disorder that can contribute to dysregulation of dopamine and glutamic acid in the basal ganglia and other limbic regions. I felt like it was such a simple revelation, I never thought my chronic fatigue, migraines, epilepsy, could have a common neurological thread with my restless leg syndrome and ADHD. Though I knew coming home what I was up against....maintaining employment and purchasing health insurance. If anyone has any ideas, pointers or anything I'm up for listening!

 

[Nakamova]

Hi morganomics, welcome back!

Did the NY neuro have any treatment recommendations based on the suspected autoimmune issues?

 

[morganomics]

Hi Nakamova,

The neurologist at NYU, gave me an order for 16 lab tests to have done. My local clinic was only able to complete 7 of the test. They gave me a script for Ritalin, so I could have enough energy to work, to pay for insurance. I didn't have it filled, I've been trying L-Tyrosine, magnesium, and folic acid to get myself going. Though with only moderate success. I was thinking of taking velvet bean, for the L-DOPA, but really I feel I'm just throwing darts in the dark. I took a job that may be more than I can handle, but I feel pressured into doing it just so I can see the doctor again.

 

[Nakamova]

Be careful with tyrosine -- that can sometimes make seizures worse because it has a stimulant effect. Magnesium tend to be better for helping you sleep (it's good to take before bedtime). B-vitamins might be something help with the energy issue, and they are also good for the brain. And you might ask about seeing a dietitian or nutritionist -- perhaps they could make recommendations about safe ways to supercharge your diet.

 

[Belinda5000]

Hello Morganomics,
welcome back to CWE

I hope everything is going better for you? I understand how medicaid can be I use to be on it.
I hope the best for you happens.

 

[Ixtal]

Hey m
I have TLE on both sides with the full witchy spooky works that sort of defy medical science. Everything in my brain is abnormal. Went to that same NYU clinic 18 months ago...switched to a holistic neurology clinic associated with NYU instead because my brain laughs in the face of medication, and test results come back too weird to give answers (as NYU said, "maybe you're just a human-alien hybrid.") Fingers crossed for you. I've had amazing luck with magnesium, b vit, glutathione etc in IV form. TLE been acting up like never before over the last month. Probably time to get bloodwork done again because it's helped narrow down exactly what my brain is depleting too quickly to replace by normal pill-form supplements.

 

[Ixtal]

Have had much better luck absorbing magnesium through really strong Epsom salt baths twice per day. Body sheds any excess magnesium so you can't have too much, just staying hydrated. Also b complexes in injection form help me a lot...just a diabetes needle in the hip. Had to find holistic medical clinic to set that up. I also get big success from IV form vitamin D. I am a big fan of complex blood work panels - the TLE brain in particular uses up some pretty weird obscure stuff (amino acids, cell salts, fatty acids) and starts to shut down
when it's all gone. The IV cocktail the NYU clinic made for me is extremely precise and tailored to what my brain gobbles up. All those TLE timespace superpowers require a lot of fuel! anyway I have all these other symptoms like autism spectrum stuff and ADHD migraines etc that go away when I adhere to the clinic's philosophy.

As for mental hospital, hang tough and I hope you start to stabilize. I been there too many times myself. At the moment, I'm trying to stay out too. Last 3 weeks been super rocky.

Thinking of you!

 

[morganomics]

Thanks everyone,

Oh how cool you went to NYU, I saw Dr. Chong and Dr. Devinsky. I chose them because of the really interesting research they're a part of and there association with the venerable Dr. Oliver Sacks. It was on west 35th street. Yes, I now take magnesium at night with folic acid. It has helped my restless leg syndrome or at least allows me to actually fall asleep! I'm hanging in there, I usually become incredibly depressed after a TLE episode or migraine. I bought some Velvet Bean to see what it might do for the restless legs, I'm really taking it easy with that as the dopamine may contribute to seizures possibly. Dr. Devinsky was mentored by a Dr. Norman Geschwind who had developed a theory of left-handedness, which theorizes that a small group of extreme left-handers may develop autoimmune disorders along with migraine and seizure. I'm the third generation to be a lefty with autoimmune problems. I'm glad at least magnesium can help a little bit. I live in Indiana near Chicago and would really like to live in NY state or near NYC so that I could receive medicaid or kind of aid. Though I'm not sure that would be a wise move if in the end they couldn't do much for me. What other holistic vitamins or supplements do you take? Have you ever taken Velvet Bean (Mucuna Prurien)? Thank you for the thoughtful replies!

 

[epileric]

Have had much better luck absorbing magnesium through really strong Epsom salt baths twice per day

Actually it's been scientifically shown that our skin is pretty tough & not very good for osmosis, otherwise all surfers would have high blood pressure from all that sea salt.

The skin is a remarkably impermeable barrier. It is hard to get anything past the skin that doesn’t involve a needle and there is no way a bath in epsom salts will raise serum Mg.

http://www.sciencebasedmedicine.org/a-seal-of-approval/

 

[AndrewIrish]

I live in Southwest Indiana (Lawrenceburg), and am in the same boat. There is no help for a Married Man either without children. I was working with a case worker at the local hospital for awhile but all she could do is refer me to a Sports Medecine Doctor (closest to a Neuro aruond here) hoping my medicaid kicked in but it didn't... so I haven't seen a Doctor in a year and a half... you're in a better boat then I am... how have you seen any doctor at all might I ask?

 

[tiggy'smom]

I'm in NJ and HAD medicaid but because I am in the process of applyling for disability, they canceled it until I show them a copy of a letter of deniel of SSI. If medicaid knows this letter exits why do they need it from me? In the meantime my lyrica costs over $300 for my fibromyalgia. Yeah, on top of the seizures that they don't know where they even fire from, I get the migraines and restless leg syndrome. The manesium works for me too for the RLS. Anyone else out there suffer from insomnia or is it just me? My PCP jus started me on melatonin 10mg and it works, but do I have to live on that? But I've been there too when it comes to the mental health units. It's funny and depressing how they have "fixed" healthcare and now everybody is covered.

 

[morganomics]

@AndrewIrish, At the moment I cannot see a doctor either until I come up with the money to pay for a missed appointment or a fee.....I go to Northshore in Portage IN. Although I haven't seen my GP who acts as my neurologist and psychiatrist since October. Medicaid Eligibility & Dental Solutions (MEDS), is attempting to help me with Medicaid though I haven't heard from them in a while. medseligibility.com may be able to help you out and myself, but who knows. I'm also a member of Mental Health America and they can help you with the application process or emergency medication situations. Currently I'm just taking 500mg of Depakote a day, which is half my normal dose, but keeps the withdrawal away. I also started taking velvet bean Muccuna Pruriens, which contains L-Dopa. It has helped with my mood, concentration and RLS symptoms, but today it seems to have not worked as well a bit of a migraine right now.
@tiggy'smom That's really frustrating I've been denied many times for SSI and Medicaid, I hope something works out for you soon. I wonder if NY state would be a better option somehow.

 

[tiggy'smom]

@AndrewIrish
I was just at at social services in my county and found out today not only did they cancel my ins. but they told me I may be resp for the back pay of medicaid of nj for the last year. Tehey knew since 7/13 that I was denied SSI/SSD in the stat and they still provided me with medicaid and are know are saying that "you signed a paper that you would pay any monies left over" the way it explained to me was md bills, not if the state pulled the plug. And now they are telleing me that after 60 days or so they will just reactivat my existing card. Am I f-ing nuts or what? I went ti nursing sshool and college, I have commen sense, please explain the to me. It took all these weel schooled congressed men and women to pass this law that leaves the well school people and those that have been in the trenches of healtcare to be left hoding nothing in the end. Did they read this law or was it just political folly in the end that let a lot of lobby to be slipped thru in the edges the we who are the neediest that pay the mos in the end? It is easy so easy to just give up!!! Had I been somebody who had been addictied shooting up in an alley and not being an honest citezn my my who life all would have been easier. i have worked since I as 14, as a nurse I fought for my patients, now I am tired and what is the use. In the end it is the dishones that win. Nobody is in my corner, I give up