[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

[DM]

Hi Shadow and Welcome to NeuroTalk. I did read your whole post and I wish I could be of help, but hang in there, as someone may come along w/some advice for you. I'm sorry I do not have any answers for you, but want you to feel at home here.

You have been through alot and I am glad you found us..

[srdaley]

Hi Shadow,
I'm so glad you wrote into the list. I myself just made my very post a few days ago. With that being said, I'm grateful that we've met and I'll do whatever I can to help you find something to assist you. First, is the place your living a healthy enviroment? Unless I'm remembering wrong, which certainly happens, you mentioned you were considering moving out of your friends home....is there some reason for this? Has he asked that you leave? If all is fine there and the only reason you thinking of leaving is that you "take up to much space," I'd talk to your friend, explain in detail the problem (if you haven't already) and see how long he would let you stay there. I'm not sure what part of the country you're in, but the weather all over the U.S. has been cold, wet, and snowy....one thing that will make any MSer's symptoms worse. The weather along with your emotional stress should have you on a scale of 1-10 at about a 12!! Thankfully I don't have MS although 14 yrs ago when I was diagnosed with another illness, I was given an MRI because I had so many of the same symptoms as a person with MS. I'm certainly not an expert on MS, but one of my best friends had it over 40 yrs ago, after my ex husband and I split up (we had also moved) we lost touch. I'm 60 now, and she was at least 10 yrs older than I was. I also worked for a Dr. in Family Practice until I became to ill to work. I miss it to this day, but am so grateful my husband is supportive and I've got a good roof over my head. My brother in law, who is now deceased,also had MS, he would be about 66 if he were living, but I learned quite a lot from him. I've lived here for 24 yrs and have a wonderful friend that is a nurse, has had MS for half of that time, and is still working as a nurse where my mother is. She's a few years younger than I am, but is always so willing to help a person if she can. I can get in touch with her at any time if you have some specific questions you need answered. With her being a nurse, she knows that the most important thing is taking care of Number 1, yep, you! There are a few basics I need to know before I can make any suggestions. I'm hoping that you can email me privately so I can give you some information that would probably be of no use to anyone else. At one point I was a chronic pain rep for the U.S. It sounds like a big job, but that's where I learned you can only do, what you can do. As soon as you try doing more than your body wants to until you are in at least a bit of a remission, you'll do nothing but get worse. Stress definitely makes MS worse, which is no big surprise to anyone, since stress is one of the worst things for any of us.

You mentioned Montel. Do you know about the book he just published called "Living Well?" (I think that's the name of it) At any rate, that will be the easiest part of our workload. Do you have family nearby? If so, is there some reason that you didn't stay with them? I'm thinking mother, father, sisters, brothers, aunts, uncles, cousins, anyone who really knows you. How about any of your old girlfriends. What you need to do ASAP is write in to the Montel show(by email) send him the story you just shared with us. I know he's probably got more information on MS than anyone else and would be more than willing to help you under the circumstances. If not to have you on the show, at least aim you in the direction of how to get the best help. Montel is a good man who has helped more people than anyone else I know. (I'm sure there are many, I just happen to love Montel and think he's got a heart of gold...also a humble man). When you emailed me back, please let me know:
Age;
Age of onset of MS
Who you have as far as family goes..
What part of the country are you originally from, and where are you now. If you had a choice, would you choose to stay where you are? (I'll explain this one later). Being in extremely hot or cold climates is, as I'm sure you're well aware, is one of next thing to make your MS worst.

I just received a new set of books for health. I got them for my condition, but MS is also in them. They talk about health, living life, nutrition....lots of stuff, but I'd be more than happy to help you do some research and found out what will help you until you can get to a good primary care physician. This is only a suggestion, but with what you've got going on, I'd try and get an Internist. They specialize in the type of thing your going through, with the help of a good neurologist. You mention that you are on Medicare. Me too. I've been getting it since I was the BIG 50, now, I'm soon turning the big 61

I live in California, just outside of Yosemite. It's probably one of the mildest climates next to Hawaii....and who can afford to live there?

Once I hear from you I can go back through some of my old Dr.s lists and see if I can find you a good referral in your area that takes Medicare. Are you on SSD or SSDI also? Do you have other income? Are you able to take care of yourself or do you need help doing the slightest of work. MS is really a strange disease.

Start by making a list of things that are the most important to you, then prioritize them. If number one on your list doesn't seem to be working out, move on to number two and so on. Just email me and let's try and find you a good Dr. first.

I'm hoping I can give you even a wee bit of hope. Being ill, and feeling alone, is such a scary place to be. Just remember you're not alone, and only an email or phonecall away. Just take a deep breath (don't forget to let it out )

I'll look forward to hearing from you. If you'd email me directly I'll be able to get back to you sooner. I'm a newbie on this list also, and I hope I'm not breaking any rules that my fibrofog has helped me forget...

Love and Hugs,
Suze
(I needed to remove my email address due to list rules until I'v made at least 10 posts)
I just goofed. I received a message saying that a person needs to make 10 posts before you can send out your email address.

P.S. If some sentences don't make sense, please forgive me. The hardest thing for me to do is to go back and reread my own emails..so boring!

[ShAdow]

[QUOTE=srdaley;220703]I'm hoping I can give you even a wee bit of hope. Being ill, and feeling alone, is such a scary place to be. Just remember you're not alone, and only an email or phonecall away. Just take a deep breath (don't forget to let it out )Suze[/QUOTE

Suze,

Thank you for the reply. I guess I "overdid" my introduction, but it was theraputic for me to publicly write about what's been happening (or not happening) with my neurological disorder.

I do feel very alone & isolated. It didn't even look like I was going to get a reply to my post, maybe I sound desperate or something, I don't know.

Anyway, thanks again for your reply to my lengthy post. I have sent you a PM that you can reply to whenever you have spare time.

Take care,

Shadow

[MrsBackyard]

Shadow, I'm sorry that you have had such a difficult time.

You do need medical care, however, so keep trying.

May I suggest something? You do need a neurologist as well because of their specialised knowledge and you do need the time to develop some kind of relationship with them. I did so with mine and I got his consent to get the prednisolone I needed from my GP instead of going to him when I had MS episodes. But that was only after we had gotten to know each other.

When you get an appointment with a neurologist, just take your medical records to the doctor and say simply that you are looking for medical care. Personally, I find that with doctors, it is better to spare them too much detail about your life history. Know your symptoms well and describe them simply and clearly. Then let him do his job. Ask questions if you need to, however.

When you find a new GP, take the same approach: be simple and clear. Say that you want to use him/her for general health care and take the time to develop a relationship.

I sense from your post that you have a lot of anxiety, which is completely understandable. I felt the same at the very beginning and it lasted for a few years. I kept it to myself, however, and 'prayed' . If you can find a group of friends, here for example, and speak about your anxiety with them, it saves you off loading it all on the doctors. Many doctors are not good at dealing with their patients' fears.

Doctors often see illness as an abstraction. I think it is how they protect themselves, actually. They know the clinical symptoms really well in theory but are often reluctant or unable to listen the patient's emotional experience of illness. Of course, you do get exceptions but they are rare and to be treasured when you find them.

Shadow, become your own expert. Find out about MS, the current treatments and other things you can do to help yourself. There are many of the latter, especially around the food you eat, the kind of exercise you get and, also, authentic alternative therapies. You need to get good rest and relaxation as well. Things like Yoga and Feldenkrais can help you maintain flexibility and are very healing in themselves.

Take your time. This way - becoming expert in your own illness - you take control of your attitudes and feelings. With the knowledge you gain you can make informed choices about the treatments offered by your doctors.

It can take years to learn about MS but begin with yourself. It does seem that you do have MS, but it is not WHO you are. You happen to be Shadow , a person who has MS, but that alone does not define you. It is simply part of your experience.

Doctors should be our servants, not our masters, by the way!

Take care . I wish you all the best. You will get there . You'll be OK.

[ShAdow]

Originally Posted by MrsBackyard

I sense from your post that you have a lot of anxiety, which is completely understandable. I felt the same at the very beginning and it lasted for a few years. I kept it to myself, however, and 'prayed' . If you can find a group of friends, here for example, and speak about your anxiety with them, it saves you off loading it all on the doctors. Many doctors are not good at dealing with their patients' fears.

Doctors often see illness as an abstraction. I think it is how they protect themselves, actually. They know the clinical symptoms really well in theory but are often reluctant or unable to listen the patient's emotional experience of illness. Of course, you do get exceptions but they are rare and to be treasured when you find them.

Take care . I wish you all the best. You will get there . You'll be OK.

Dear MrsBackyard,

Thank you very much for your time and kind words. I had absolutely no idea how emotional I truely am about my illness. After I read your post, I broke down into tears. My anxiety is indeed very high.

You said a lot of mature things in a very calm way and you made a lot of sense to me.

Time for this MS'er to take a deep breath, take a good look at my needs, research my illness and locate different types of help. Nothing good comes from hasty decisions.

Your post helped me to stand back and perhaps see how I have let my emotions rule my life since diagnosis.

I look forward to meeting and getting to know people like you on the board.

God Bless,

ShAdow

[MrsBackyard]

Dear ShAdow,

Yes, you'll be fine. Take life a day at a time and make some plans and goals for yourself - simple ones that suit you and are achievable. That helps deal with anxiety as well.

You write well. Do you keep a journal? That can be very helpful as well.

All the best