progressive illness w/out insurance = nightmare

[btfldisaster]

However looking back with the help of my GP we have realized that I actually I began having symptoms in 2007. Well due to 2 lay offs (both of us) we lost our excellent insurance in 2010.. And  neither of us have gained back insurance although we are fortunate that he has been  able to work and provide for our family we felt lucky in that we are a healthy family UNTIL

The first time I woke up and fell, and could not communicate and had severe weakness was March 4, 2012 I was airlifted to Grady memorial Hospital in Atlanta. Looking back and I have had lots of time to do this I realize that I fall because my muscles are stiff /rigid when I wake up sometimes and painful or they are weak.


My GP has tested for all the autoimmune diseases that it could possibly be looking for the quick answer which is fine with me although nothing has come up. I have been hospitalized three times since March 4 2012 and given Solu Medrol – with take home step down packs

First of all I was airlifted because of suspected stroke March 4, 2012..no stroke what was found follows: MRI Brain w/out contrast diffusion weighted: 2.3x1.6 T1 hypo intense and t2 hyper intense focus right front parietal convexity slightly lobulated and smooth margins the lesion does not show any restricted diffusion, there is mild widening of the right prefrontal sulcus.  Mildly low lying cerebral tonsils 4mm below foramen magnum. Same report CSF density collection right periolandic cortex likely porencephaltic cyst differential also includes arachnoid cyst or focal cystic encephalomalacia???   I was told that I did not have a stroke had an arachnoid cyst but not significant in size that they believed I had complicated migraines and said if I didn't improve within a week to go see a neurologist I developed a rash on my face and chest they gave me Benadryl and sent me home.

The following day I was readmitted to my local hospital with my face so swollen I could not open my eyes and my skin on face and upper chest bright red...no itching...the hospitalist admitted me because of the rash and the poor response to the meds the er had tried and that my head was bobbing, and my arms and legs were spastic, I was given a bunch of Soul Medrol and went home with a walker two days later...

I went to a neuro as recommended who did an exam and suggested a spinal problem so he did a lumbar puncture came back with one oclogicinal band, csf index 0.8, and albumin index>12.0 all else normal ...letter shortly followed from the neuro to get a vitamin D supplement as it was low, and get second opinion such as mayo clinic...

I was told to go to the Mayo Clinic but chose the MSCA  who ordered an MRI after the exam which came back with a questionable abnormality involving the cervical spinal cord posterior to c6 and c7...the dr showed it to us and said "it’s not MS, MS lights up bright, not dark, " however ordered a second complete spine mri with contrast.

Still present was the questionable abnormality in the C spine, a synovial cyst posterior to the s2 vertebral body, L4-L5 mild disc bulge, mild disc dissection involving the mid to lower thoracic spine T9-T10. There were no new enhancing lesions found –
OK so were there old ones? The MSCA told me that the problem was in my spine but there was no evidence of active MS...And that I needed to see a neurologist

I have not ever improved completely I do gain strength and more energy from steroids but that is no answer to the real problem.  The last time I was given a solu Medrol treatment was the day after thanksgiving and the Dr. at my local hospital told us to go to Emory where there were neurologists on staff

I had no improvement and actually have developed more odd symptoms since this started so I finally I went to Emory University example severe constipation-new, severe-hip and leg pain, and sleep issues which started in August observed at the hospital thought to be seizures during my sleep.

Was examined by neurologist on duty and referral to Emory MS specialist as I am still unable to walk straight line, visible hand tremors, unable to stay upright with eyes closed and feet together and the test that they run the crochet hook up your foot was positive…

The Neuro at Emory was very nice and did a full exam, I think he had his doubts about what I was telling him until we began the exam and he then began trying to help me figure out a way to pay to come to Emory for further evaluation….He asked me to stop taking all current meds which were only treating symptoms so that the disease would not be masked by meds and I have done that, but again reminded me I don’t have insurance so I would need to pay up front for services, since my illness is  life altering not life ending I was put on more steroids and out the door I went.

My question is since all of you have similar symptoms some not, but most have had a long wait and the sadness, fear, frustration, and all the other 99 things that happen when life as you know it is turned upside down is there anything in what I am saying that anyone understands and can translate for me?

I have stopped taking every single med as suggested by the Emory doc so that none of my symptoms are masked, so I have spent the last three weeks going downhill rather quickly and suffering a great deal.  I can handle pain and discomfort, I am a very tough person MY GP here in town is so upset that nothing has been figured out, he hates to see me this way as he knew me when I was vibrant, working, going to school, volunteering, and living life to the fullest, I am still in this body but have hung pictures of myself up from two years ago to try to regain my smile as my facial expression is gone.

[Maks322]

Welcome to this site,
I am fairly new here myself, so I am still learning so much myself.  You will find the people here wonderful and helpful.  I guess being so new, I find myself so ignorant (and truly in awe) to the healthcare system (woes) in this country.  I hope you are feeling better and find a answer.
Maureen

[HVAC]

You can't blame yourself. The fact they were looking for something would have disqualified you. Acne is a pre existing condition. I have MS, asthma and Cancer and am fortunate to have insurance. We went with out it for two years when my husband was unemployed. I got pneumonia with asthma and was to stubborn to go to the ER. Luckily a Doctor started a practice with out insurance and I saw him on the news. You paid in full but it was cheaper. He had all his services listed in his waiting room with the cost. It was like $80 an office visit. He had samples. It worked out great. My new doctor sees a lot of people with no medical insurance as well and gives them a discount since she does not have to wait to be paid.

Alex

[btfldisaster]

Georgia does offer Medicaid to those who qualify but the Social Service Advocate at my local hospital files a SSI claim a year ago and while that is being processed I cannot qualify for any other type of state help...however we have been paying out of pocket I just have to make a decision as to whether or not I want to see another Doctor or give it some time...my biggest mistake was pushing too early for a diagnosis...I have learned through this site that it takes time to document and figure out Neuro conditions...I told my kids if it was my heart or diabetes it would be easier...I did stop all medications because I have never been one to treat illness that way....and I do think that some of that stuff could be masking or making things worse...I told my Dr. the other day to remember that I had my children completly naturally, went home the same day I had a hysterectomy because I would recover better at home and did not want to stay there just so they could give me morphine...I am going to take the time to take care of me the way I have for many years which is through meditation, exercise and a clean food plan...and will see a movement disorder specialist in February.  Thanks for your time,, this is a great forum which has encouraged me NOT to give up or give in to whatever this is

[Guitar_grrrl]

Wow!  I'm so sorry you're going through all this!  Well, Welcome.  You've found a cool spot on the weird world web with all kinds of information.  Our Health Pages (links on right side of the page) are loaded with all kinds of MS info.

The folks at Emory sound like they're being proactive, but to demand $$ up front is so daunting.  They must have some sort of financial assistance program.  After all, I'm sure they see patients from all over the economic spectrum.  I know our local university MS centers see Medicare patients.  Surely the state of Georgia has a backup plan for those who have lost insurance.

The wait for diagnosis can be maddening, and for some folks, an accurate diagnosis can take years and multiple neurologists' opinions.  All we can do is continue to lead our lives as we jump through the hoops.  Take good and special care of yourself.  Eat good, minimally processed foods, get whatever exercise you can, enjoy time with your family and friends, etc., etc. It's frustrating, I know.

Stay in touch, and let us know what's happening as you go through your journey.