[ShAdow]

Hello everyone

I go by "Shadow" in here. I was on the MS World chat & message board a few times over the course of several years under a different nick. My chat friend turned me onto this board, I hope to make some new friends here.

My MS started like this, I seriously hope that you, the reader, do not have similar experience with MS:

I had an experience with ON in late 2004 & early 2005. My ophthalmologist ordered an MRI & found one new lesion on my brain. I was very scared to see the neurologist that she had recommended, but went anyway. She did a thorough exam. That was the first time that I had ever noticed quite a few neurological symptoms. She wanted to do an LP on me at that time & I declined. Several months went by. My vision declined at a fast rate & my ophthalmologist declared me "legally blind." I could not see & I was very scared. So, I went into see the same neurologist for the LP. It showed only "1 MS band" & everything else on the LP was normal.

My next set of MRI's taken at that time showed that two more lesions had appeared. So, according to my diagnosing neurologist & those MRI's & my new symptoms, this was enough to diagnose me with MS. At that point, I still didn't know much about MS, what it was, or that what I was experiencing had anything to do with anything other then my severe chest/rib & bone pain. I started on Avonex & was given some other meds to help manage every one of my symptoms. She started me on a five day course of IV Solumedrol in hopes to regain some of my vision. The Solumedrol did not work to quickly restore my vision, but it did get rid of my chest & bone pain. I was “legally blind” for two full months. It was a very scary time in my life, I will never forget it.

A few months went by while I was on Avonex therapy. I had learned more about MS, the symptoms & the disease. I didn’t realize how many symptoms I had been experiencing were due to MS. I was almost “happy” to learn that my falls & other major symptoms actually were due to something treatable. I accepted the fact that I had MS very quickly. The support group that I had found locally was a blessing to me. The people there were kind & very informative. We all had something in common, issues with a disease called MS. With those strengths in mind, I decided to “take control” of my MS. I told my neurologist that through research, I had decided to try Copaxone. She was nice to me & ordered the prescription right away. I got training through the Copaxone home nursing program on how to give myself the injections. By doing those daily injections, I felt that I had some type of control over a disease that might someday take control over me. I felt empowered.

Then a man came into my life. He was my “high school sweetheart”. He lived in a beautiful part of the country with low humidity which helped my breathing issues. Full of trust & love, we quickly hooked up & I moved in with him. He did not want me talking about my MS to anybody. That should have been my biggest “red flag” & I should never have left my home & stored my possessions & moved into his home under that pretense. His denial turned into my denial & the rest is my history. That part of my past has turned into a nightmare for me. I left everything there, after suffering both physical & emotional abuse during the later part of our relationship.

I was physically ill & an emotional wreck after that. During my stay with my ex boyfriend, I had acquired multiple lingering pneumonias, pleurisy’s, a small hiatal hernia & three stomach ulcers. The medical care that I received was inadequate at best. I only had Medicare, no supplemental insurance & no family doctor. I was using only a walk in clinic for my healthcare. By the time my family found out that I was physically ill & not receiving any kind of quality health care, my stay with my “high school sweetheart” had ended. He had beat me up so I left.

When I got back to my hometown, I stayed with my girlfriend & her husband for an agreed upon 6 weeks. I had only looked into a few places to live there, which was supposed to be my main goal. Instead of doing that, I attempted to address my old physical ailments there through new doctors. I was still determined to remain in denial about my MS. I thought that if I saw a new neurologist, that he might diagnose me with not having MS & that by doing so, I could stay in denial. That experience was a nightmare. If I had that to do that part of my life all over again, I would not have hesitated to see my diagnosing neurologist. To this day, I regret it. All that new “MS Specialist Neurologist” did for me was cause me more physical & emotional pain. He continually compared me to his niece that has MS. He compared the number of lesions we both had, compared our ON, our symptoms, everything. He sounded very bitter when he told me that “[my] niece’s MS is worse then yours, come back when you have more neurological problems.” One thing that I learned from that experience is to always take a knowledgeable friend or family member to the doctors with you. If you have somebody with you who can advocate for you then chances are that something like that would never happen to you. Better yet, bring a tape recorder. I am positive that I would have been treated better had I not been alone.

The six weeks had come to an end at my girlfriends house, I had to leave. So I left my home town in search of acceptable living quarters. I ended up staying with some friends who were involved in their own abusive relationships. It was a nightmare, I did not know where to go, or even how to go about finding a place to live anymore. I ended up staying at another friends house, who later became my very understanding boyfriend. To this day, we still live together & are doing well, with the exception of my failing health.

Last year, I found a local neurology group who specializes in caring for MS patients. I was in the midst having an excarbation, the first one in well over a year for me. As I was sick, my new boyfriend helped coordinate information from my diagnosing neurologist to my potential new neurologist. We had attended an MS luncheon sponsored by the NMSS & felt ready to treat my MS head on, armed with a lot of information. The neurologist who saw me took a very detailed history. My history includes an undiagnosed lung mass & he actually wrote on my record that might be the cause of my neurological symptoms and lesions. The entire visit was superb, with the exception that he did not have a new MRI scan of my brain during the exam. And with the other exception that he decided that my past, very elongated bout with ON causing total blindness in 2005, was the result of “severe migraine”. He told me that the three lesions on my MRI from 2005 did not manifest MS. He said that, “according to the new McDonald criteria, you do not have MS.” He did say that he would run an MRI on my brain & that he expected not to find any new lesions. He did not schedule a follow up appointment. In lieu of a follow up appointment, told me & my boyfriend that he would telephone us with my new MRI results. That phone call never came. I was very interested to get my MRI results back after having went so long without treatment. So I wrote that neurologist to obtain both the record of my visit & my MRI results. To my total shock and utter dismay, my MRI results showed A LOT more lesions. I never got a phone call back from that neurologist. I remain utterly in limbo. I don’t know where to turn or what to do anymore.

To this day, I have yet to acquire a family physician. I have been to two of them, once last year & once this year. When the first one found out that I have MS, he said, “I do not treat MS, I do not treat the symptoms of MS, nor do I make referrals to neurologists for Medicare patients.” Needless to say, that visit did not go well at all. The other medical doctor that I recently tried to acquire as my main source of health care, did not have the time to discuss my medical history at any length. She actually seemed quite angry when I tried to tell her a bit about my medical past, and would not take the time to go over any medical reports that I had with me. So, needless to say, I am still looking for an understanding family physician. I have bought a good supplemental insurance but it is still Medicare based.

In writing this story to the board, I am asking for your support. I am asking for your help. I am completely lost & do not know where to turn for medical help anymore. I am at a point that I may end up leaving my boyfriend & going back to my hometown to live, just to obtain quality medical care from my diagnosing neurologist. I don’t want to leave my boyfriend, but I don’t know what my other options for good health are anymore. I almost want to share my story with Montel Williams, a fellow MS’er. The “fantasy” to reach out to a fellow “MS’er” for help seems like my last hope to obtain both quality medical care & the ability to stay with my current boyfriend. Maybe somebody here on the board can help turn me in the right direction. I am at a total loss of what to do regarding my healthcare. I am a very positive & happy person, but right now I am simply lost & fairly sick.

I thank whoever reads this for their time. Take care & remember that “smiles are frowns turned upside down.” Don’t forget how important it is to laugh, because I’ve found that laughter is indeed the worlds’ best medicine.

Shadow