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This page deals with my life with MS, my support system, and other critical thoughts about MS. This is based on my experiences with MS, and my own opinions based on what I have seen and heard in regards to MS.
My life has undergone major changes as a result of dealing with MS. Now my ears have considerable hearing loss; my vision is constantly getting worse; my legs have weakened to the point of needing a wheelchair full-time; my arms are growing weaker all the time; memory and cognitive function is not as good as even a year ago; my urinary and bowel function is always changing from bad to worse; tremors are a constant battle; my appetite changes from normal to nothing constantly, and fighting fatigue is a constant battle. This is probably not everything I am dealing with, but you get the general ideal. My day starts and ends with pain, and relief is hard to come by.
Sounds like the makings of a good pity party. Oh, believe me, I do have my days, but for the most part I am a happy and smiling person. Mood swings, anxiety, depression, agitation, etc. are part of the mix of symptoms we who have MS deal with. We are many times on an emotional roller coaster. I do try real hard to combat these problems with humor and laughter. I have a great support system, which for me, is the most important of all treatment methods of this disease. It is the medicine which keeps me sane and functioning.
I use to work 16 house a day as an Accountant. I was a very active person and having to accept the limited function I now deal with, was more difficult then I could ever explain. I just had to accept it. I had to understand that I could still be vital, but not in the same way as before. My computer provides me with the ability to be productive.
Creating and reconstructing this web site has given me a sense of direction and purpose like nothing else could have ever given me. Allowing me to share myself with the visitors has been great medicine. It has shown me accomplishment. It has been a great endeavor, and I have enjoyed bringing it to you. I hope you are able to gain some help and support from the pages of this web site.
Important Note: The sections below this one deal with critical areas of Multiple Sclerosis which many people would rather not deal with or accept. These are dealt with here to bring awareness of facts which many of us who deal with this disease must face. For support and more information please visit MS the Lite Side. The support of my family, friends, and other people dealing with MS has helped me cope and find peace with my disease.
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My Struggle for Answers
How I ended up with Multiple Sclerosis (MS), and how long I actually had the disease is still a part of the unsolved mysteries of my life. I am not even sure when it actually began. I was suffering a series of problems for a very long time that had about as many diagnosis as there are doctors to give them. Finally, after being diagnosed with a condition known as RSD (Nerve Damage) by one doctor, and having another doctor rule it out, I was headed down the MS road. He said that I had nerve damage all right, but that it is was located in my Central Nervous System. MS was the problem I had.
I was told that MS was a disease of the Central Nervous System in the brain and spinal column.
I was told there was no cure, but treated early enough in the disease, there was hope of maybe sending it into remission or, at least, slowing things down a bit.
After hearing the news from this doctor, I decided to continue on my merry way and not worry about this information he had just given me. I had far to much going on in my life to deal with MS too. So, denial became my friend.
After leaving my husband, I continued having weird problems and symptoms. A couple of heart attacks were even thrown in the mix of medical difficulties. I just chose to deal with them and let the other problems alone.
Finally in January of 2001, things really got to a bad place. I was having problems with going into dazes for long periods of time, shakes began to be harsh, weakness and spasms in legs grew more frequent, headaches got more intense, memory and cognitional problems increased, and fatigue was all consuming. I decided, if I was to survive, I had better go to a doctor. The doctor set me up to get an MRI.
The visit after the MRI gave me little information at all. Except, I was told it wasn't MS. (Later evaluation by another doctor found that MS lesions were present. Lesions are, also known as, bright spots and are located in the white matter of the brain.) Well, here I was now ready to deal with this thing, because it was getting worse by the day, and I was left with no answers. (This is common with many MS patients. Many stay in a place commonly referred as 'Limbo" for many years before the answers come in the form of a diagnosis. Please refer to the Progressive MS and Limbo Land sections on this page to get a better understanding of this concept.)
A year after this a doctor thought it might be MS, but he didn't know enough about the disease to help me much. He said I would have to go to see a neurologist. I was moving at the time. So, I waited until after the move to locate a doctor, transfer records, and get to the bottom of my symptoms.
I went to a doctor who had dealt with my first heart attack. After carefully looking at my medical records and evaluating my symptoms, he said that it was most certainly MS. He referred me to another neurologist, who did a battery of tests. She confirmed the diagnosis. The path to a diagnosis was accomplished. Now treatment was the next order of business.
Copaxone (the C drug in the ABCR drugs) was the drug I chose because it was suppose to have less side effects. This medication caused me a lot of problems, but mostly heart palpitations and extreme anxiety. She took me off this medication without any argument. The treatment of MS wasn't worth risking more problems with my heart.
I had to change doctors and to please the new doctor, I tried another ABCR drug called Rebif. I wasn't on it very long before major problems with my heart beginning to present themselves. Make sure before taking any of these drugs you understand how it will work with other medications you are taking and other conditions you may have. Safety is an important aspect of surviving this disease.
Please understand that my experience may not be the same as yours. There are as many different patterns to MS as there are people who suffer from MS. Everyone is different. Treatments I chose, which didn't work, may work for others. To make these choices you must get all the information you can and discuss all the options with your doctor. Mostly it is trial and error. You don't know what will work until you try it.
Above everything else stay positive. Let laughter and support lift you spirits and give you strength.
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Early Detection
There is so much talk these days about early detection when talking about a multitude of diseases. In every case there is something said about the sooner you find a problem the better able you are to treat it. In some cases you can cure many diseases even certain types of Cancer, by finding it early. Medical professionals spout this like a religion when you are talking about Cancer, Aids, Diabetes, Heart Disease, etc. When dealing with Multiple Sclerosis, this is very hard to reach. It isn't that early detection wouldn't benefit people who suffer from it, but it is very hard to detect something without a way to detect it.
Yea, we have ways of testing for Multiple Sclerosis, but just how effective they are is in debate. MRI's and Spinal Taps are the main tests used. Yet even when something looks like an MS lesion, doctors question whether it is MS or not. Doctors keep making things seem like if it don't show up in neon lights it isn't happening or doesn't exist. Well it sure isn't going to happen with Multiple Sclerosis.
OK, what is Multiple Sclerosis? It is a disease in the central nervous system. The brain and the spinal cord are where this is located. The lesions occur to represent damage. This is about as far as I really want to go with that, because that is where the agreement ends. Just about everything involving this disease is debated. You can go to two neurologists and get two different answers on what MS is, and how to diagnose it. (Go to the web site links under the Multiple Sclerosis category in the Links Page to get a more complete definition of MS.)
This is the most confusing disease I have ever dealt with or talked about. The doctors make it even more confusing. They tell you, to deal better with a disease, early detection is necessary, but they won't put their name down when it comes to MS. Even when they find something that is lesions, they say it might be MS. They say that symptoms could be anything, or something that mimics MS. Yet they still won't deny it could possibly be MS. There are those who deny it altogether and tell the patients they are imagining symptoms, are depressed, or give some other vague reason for the patients symptoms. Are you confused yet? Well, it gets worse.
I can remember in my own case, doctors telling me it was migraines, depression, anxiety, or just my imagination Why someone would imagine or make up these crazy and wacky symptoms, is beyond my reasoning. Oh, I guess we just like to be looked upon as crazy people. Well, I could go on forever with stories of people who have had these problems and worse trying to get diagnosed, but I will deal with that later. (More on this subject in next section).
If early detection is that important in treating and curing disease, then why hasn't someone come up with a method to diagnose MS? Well, they say that it's origins are unknown. This makes it harder to understand and therefore diagnose. Yea, this is true, but the methods used now aren't agreed upon. Two doctors can look at an MRI with MS lesions and come up with two separate diagnoses. Think I am crazy? Well it happened to me. So much for early detection. Someone has to say what it is before it is considered having been detected.
If you want the one common factor in all these topics, it would be that doctors know very little about Multiple Sclerosis. Even the so called experts, can't agree with each other. Doctors refuse to listen to their patients. The patient couldn't possibly know how they feel. Gee, if they don't, who does know how they feel?
People with Multiple Sclerosis can carry it for years without even knowing they have the disease. Even many with the disease don't look like they have a disease. MS symptoms are not visible by merely looking at the patient. It doesn't cause outward signs, unless it has caused damage, such as, loss of use of limbs, numbness, tremors, shakes, etc, You can have MS for many years before that happens if it happens. How do you see skin having electric shocks, itching, or tingling? It may show on the faces of these patients. They may have a look of pain, or frustration but who pays attention to that. So, much of this disease is hidden from the public. "Gee, they don't look sick". Well, guess what they aren't sick. They are dealing with a bunch of wacky symptoms that make no sense, and their doctors make even less sense.
This disease is a real interesting disease. Having it is a nightmare that you never wake up from. It can go away over time and be gone for several years. It can come back at any moment. It can come, move in and never leave. There are just to many variables to it.
In order for us to ever get to the early detection of Multiple Sclerosis, doctors are going to have to start listening to their patients. Those of us now with a diagnosis of MS, have it because we finally found a doctor to listen. Neurologists are the worst. Many expect to look at an MRI and have the words of every symptom we suffer from implanted there. Well, at least, that is what it seems like. They are very poor listeners.
I have known people to be diagnosed based solely on symptoms. I would love to meet their doctors. I believe if one doctor can do it others should be able to. I think all doctors dealing with MS should read the same material. As it stands, I have no clue where doctors come up with some of their information.
I am looking forward to the day when Multiple Sclerosis gets its name with other diseases for the ability to find it early. If this section seemed confusing to the reader, the next one won't be much better.. There is really no way to detect something early that at its earliest can't be detected. When the only way to detect it early is to listen to the patient, we are in trouble unless we teach doctors how to do it.
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"Limbo Land" The Patient Lost
OK, here we go. This is one of the hardest topics to explain, but a very important one. If the visitor hasn't noticed, one topic runs into the other. Why? Because, they are all linked. If you can't detect MS early because doctors don't listen, and you still are having unexplained symptoms that seem to be MS related, where does that put you? Welcome to Limbo Land. This is the basis of the Limbo Land concept.
Patients are suffering because doctors refuse to diagnose them with Multiple Sclerosis. You read in literature that if you have symptoms of MS, and there is no other reasons that can be given for them, then MS it is. Well, most doctors never read that particular piece of information. If they did, then they have decided it isn't true. I even had information sheets from The Multiple Sclerosis Foundation sent to me that said the same thing.
Before I was officially diagnosed with MS, I went to doctor after doctor and got numerous answers for my symptoms. Problem was, they never lasted. I would go to another doctor for a second opinion and get a totally different answer. Oh boy what a mess. It was a circle that always took me right back to MS.
Limbo Land is a very hard place to be. You know deep in you heart, if you are honest with yourself that is, that you have MS, but getting doctors to say so is very hard. You have the symptoms. They don't give you a concrete answer for them, but you still suffer. They try and treat you for various things, but still you suffer. They tell you it might be MS, but still you suffer. Peace will never come until a firm diagnosis is made, but still you suffer.
It keeps going like that until the diagnosis finally comes. Your emotions take a pounding; your symptoms often get worse due to stress; you are looked at like you are a crazy; and most of time treatment won't happen until your diagnosis is firm and final. There are a few doctors that will treat you on a maybe, but not to many will. Of course, if a doctor is treating someone with medication that is most definitely MS medication and only saying maybe to MS, I would be asking questions for sure. There are those I have talked to in that situation though. So, I know it happens.
MS societies and foundations won't help you unless your diagnosis is confirmed and many services are shut down to you because your disease has no name. This makes dealing with Limbo Land very difficult. How can you deal with something that hasn't got a name?
Yet the solution, like early detection, is so simple. Doctors need to listen to their patients. I repeat this so many times, because it is the mistake that costs patients the most. Why is that such a hard concept for doctors to grasp? It could solve so many medical problems. Not just the ones mentioned on this page. Patients are people with emotions and feelings. This takes such a toll on people who are suffering. Patients know how they feel. We know more about our own feelings then the doctors. Yet, doctors just ignore us or give us a run around to find out what is wrong with us.
People can stay in Limbo Land for years before they get a diagnosis. During this time, what is happening to them. If the early detection concept is true, then they could be putting themselves in danger. The longer it takes to get a diagnosis and treatment, the more of a toll the disease is taking on their bodies. The stress alone is making their symptoms worse. So what can they do.
Keep searching for a doctor to listen. Make the doctor listen. Patients have to learn to stand up to these know-it-alls. There is no substitution for boldness where these jerks are concerned. Giving them all the facts, and laying the cards on the table is the only way to get their attention. Taking responsibility for your own health care is very important to getting you out of Limbo Land.
Keeping a journal helps to remember all the information that is needed to be passed on to the doctor. (Refer to Coyote's MS Symptom Charts. These can help with this aspect as well in applying for SSD.) MS effects our memory. It is important to log all symptoms into it so you can give the doctor the whole picture. Everything you believe to be associated with MS should be included in the journal, if a diagnosis is what you are looking for. Time is not on the side of people who stay in limbo. Accepting our disease is hard as it is. You can't accept something that isn't there. Living in Limbo Land, is not where healing can happen.
MS is a progressive disease, no matter what anyone may say. The longer there is no diagnosis, the greater chance of progression. No one cares for us like we do. If we want others to take us seriously, we have to take Multiple Sclerosis seriously.
I hope, if the visitor is one of these people who is still in Limbo Land, you will take the steps to make the doctors listen and give you the diagnosis you need. You deserve to know what is wrong and have it explained to you. The not knowing is harder then dealing with the disease. It is your right to know the truth and be listened to. Please take the action before it is to late.
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Progressive Multiple Sclerosis
OK, we have talked about early detection and Limbo Land. Because there is no solid way of detecting MS early, many people go without a diagnosis. Not hard to grasp the fact that these two subjects are linked together. Now lets link those two ideas to a third concept. Multiple Sclerosis is a progressive disease, but the progressive side of MS is not discussed much Oh, MS societies give it a little space, and it is hinted to, but never dealt with in much detail. Doctors, MS societies, and even MS patients don't want to deal with this concept. If you chose not to deal with something, does that mean it doesn't exist?
I use to think if I just accepted what doctors told me then I would never have to deal with MS. I found out the hard way that getting those answers was the only way I was going to get the help I needed. I had to accept I had a disease, then when diagnosed, I had to accept that I had MS. Well now I have to accept that my MS is progressive. No early detection, was in Limbo Land, and now my MS is progressive. Gee, almost like pieces to a puzzle that fit perfectly.
They say there are many types and stages of MS. (This is the only time from here throughout the rest of this topic you will see the word type used.) They are Benign MS, Relapsing/Remitting MS, Secondary/Progressive MS, Primary/Progressive MS, and Progressive/Relapsing MS.
I am not going to bore the visitor with a whole lot of descriptions here. The web sites on the Links Page can do that. I want to let the visitor understand the progressive side of MS from someone who deals with it. I only gave that information so if I use certain terms in the course of this topic, you will understand what I am saying and can see how MS is put into stages.
If we were to listen to the MS societies and foundations, we would get the idea that progression is rare. Disability due to MS is considered also as being rare. Most people work and have little change in their routine. Well, in the forums I am a part of and have been a part of, it is about 50/50 for those disabled due to MS. So I just wonder where they get their information. I know plenty that work, but I know just as many who don't. As for progressive MS, I believe it is more numerous then they would lead us to believe.
Progressive Multiple Sclerosis is not a money maker. They can't show the grand side of MS by giving much emphasis to progression. The most common topic concerning MS stages is Relapsing/Remitting MS. I am sure it is most common, and I am in no way minimizing the problems these people deal with. I am just trying to bring about the awareness of the progression of this disease so people don't get the idea that all people with MS are in just one category. Relapsing/Remitting MS can turn progressive at any time. So all people with MS need to understand that Multiple Sclerosis is a progressive disease, and it can progress from any stage at any time.
It seems that doctors and many other people are linked to Relapsing/Remitting MS and forget that not all people are the same. There are as many different patterns to Multiple Sclerosis as there are people who have the disease. Everyone is different. Even two people within a progressive stage of MS will not progress the same. This makes the labeling of different stages of MS even harder to deal with. The stages are vague and don't tell the story clearly.
You will notice that I have used the word type only once in this section of this page. I believe it is time I explained why. I used type above to help the visitor to navigate to the place on web sites that are encountered under that topic. I do not believe Multiple Sclerosis has types at all. I believe they are stages. I believe that you can pass from one to the other rather quickly at times. I believe once you pass to a progressive stage you can't go back the other way. Just like in Cancer, once MS becomes progressive your not going to stop progressing or go back wards to Relapsing/Remitting MS. Of course, there is also the possibility that a person with MS won't progress at all to another stage.
I think Multiple Sclerosis patients should not get too satisfied when in one certain stage of the disease. Many MS patients wear their Relapsing/Remitting MS like a banner or flag. This really is noticed in several famous people who have MS. They stay clear of the word progression where their MS is concerned. They go snow boarding, sky diving, mountain climbing, and many other dangerous activities to prove they are battling their disease and winning. I know many people in this stage that still aren't able to do these activities. They are having just as rough a time as I am, and I believe these people fight just as hard as those who do all the dare devil events. As a matter of fact, these people fight harder.
Does that mean those who aren't doing these things aren't battling their disease and are just laying down waiting to die? I hardly think so. While they do their acrobatics and heroics, I am fighting to get up out of bed. While they drive fast cars and motorcycles, I travel down the street in a power wheelchair. Does this make me any less a fighter? Absolutely not. I am glad they are able to do these things, but doing these things does not make progression any less possible for them. They aren't accepting the whole picture about MS. It does make them great representatives for the MS organizations though. Drug companies benefit from these efforts. I believe they should do them for as long as they are able. I will never be one to deny someone a chance of having fun and enjoying life. All I am saying is don't forget to be aware of other aspects of this disease.
There are treatments for Multiple Sclerosis. They are called the ABCR drugs. Avonex, Betaseron, Copaxone, and Rebif are the four main drugs used to treat this disease. If you read literature the drug companies provides they are all for Relapsing/Remitting MS. Oh they say a little bit of the fact that they may help slow progression. Of course, this has not been documented as fact. Might and maybes are all you get when treating Multiple Sclerosis, especially when it is in a progressive stage.
What specific progressive stage am I in? Well according to doctors it is more likely to be Primary Progressive MS. To me it matters little what name you put on the stage of MS I am in. What matters to me is the fact that people would rather I hide some place then to deal with what I represent. Most of my MS friends accept me as I am, and what I represent as far as MS is concerned, but there are those who just wish I would not exist so they don't have to deal with the fact that what I face today they could face tomorrow. When the subject of progression comes up they try to move to happier topics or just ignore me all together. Then there are those who want to feel so sorry for me.
I neither want nor need pity, just understanding. This is a part of the disease of MS whether anyone wants to accept it or not. Will every person with MS hit the progressive stage? Probably not, but it is always a possibility. To accept anything you have to understand the whole picture. I tried to ignore the progressive side of MS, I even tried to ignore MS completely. It didn't work. When faced with it head on, I had no choice but to accept it all. Once I accepted it all, I found I could deal with my disease much better. I won't be blind-sided by anything MS throws my way. I will deal with my disease one day at a time. Equipped to handle the daily struggles.
See with my stage of MS I don't get relapses. I haven't had a break in symptoms for three years now. They mild down some and change at times, but I constantly have to deal with something related to MS. Everyday is a challenge for progressive MS patients, and they to are different in what they have to deal with. We all know we aren't going to get better. We have to deal with our disability as a result of the disease. We also understand that tomorrow could be a whole lot worse then today was. We have to take life one day at a time and deal with things as they come. If we don't, then we loose. We can't take things for granted and choose not to deal with it because it is easier. We fight to accept our disease every day. We have to, or give up and let the disease consume us.
Early detection of MS=diagnosis=early treatment=less chance of progression. See how all the pieces fit. See I believe the treatments could work, if they were used early on in the disease. When is soon enough? Who knows? I just know that doctors hold a key to this if they would use it. Listening to the patients. I am not saying it will cure MS. I don't see that happening in my life time. I am only saying that it could make a difference in the outcome of MS in the long run.
People need to understand that MS is a mysterious disease. It is because of that fact, we should never loose site of the whole picture. No one knows how or where this disease will strike next. Putting up defenses isn't saying that you have given up. The defense of acceptance is the greatest tool we have. Once you can accept all aspects of something, then you know what defenses work best.
I hope the visitor comes away with more understanding. It is not meant to offend anyone only give all the information in understandable terms. To give the information from a patients point of view. One who deals with and has dealt the aspects of MS others try to hide from. I want all the information when making a decision, why not have it all when dealing with my disease. This is the fact I hope I have passed on to visitor.
I would also encourage you to visit MS the Lite Side for support and tons of information about Multiple Sclerosis.
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