This week I am going to write about eating healthy. I realize now how important watching what you eat is. Since I have be diagnosed I found out that I shouldn’t eat gluten. I don’t think I have Celiac’s Disease but I know if I eat gluten I am going to get a headache and a few other symptoms. I have noticed since I have cut out most of gluten in my life that the MS isn’t as bad. Now this could be because of the medication I am on but I truly think that by cutting out the gluten my body isn’t as reactive as it was when it always had it in my system.
The MS Society recommends a low fat high fiber diet. They say that you should eat a diet low in saturated fats and use supplements of Omega 3 and Omega 6 oils. I personally can’t start taking any of the fish oils so I used to take Flax pills instead. I also read on another site where it says you should cut out all fried foods and refined sugar. They also say that white meats and fish are the best kinds of meat to eat. I personally am considering going back to being a vegetarian. You need to also cut out any foods that you are allergic too. You should eat lots of vegetables and drink plenty of water.
As I was researching for this post I realized that this “diet” isn’t any different than what every person should be doing regardless if they have MS or not. I am going to try and follow what I have learned but I know it will be super hard for me. I feel like I already cut so much out when I took out gluten and dairy that I am not let with many choices. I know that I have to do this though so I am going to start working on it!
If you have any questions or have a topic that you would like to learn about please leave me a comment and let me know! I am always looking for topics.
This week I am going to talk about how some people are misdiagnosed with MS when they actually have Lyme Disease. I got the idea for this from a comment that was left on the MS a few weeks ago. After I read the comment that she left I knew I had to find out more about this. There is so many reports out about this subject but I have found they are hard to digest and get through. I am going to post a summary of what I have found on the subject. (Please know that there are reports out there but they hard to understand and I am going to do my best to high light all the interesting things I am reading. If I get some thing wrong please let me know so I can correct it!)
I read where it says that they patients are getting the diagnoses of “probably MS” and not an official diagnoses of MS. While they are undergoing treatment for MS they aren’t seeing any improvement in their symptoms in fact they may be getting worse.
MS and Lyme Disease both attack the central nervous system and leave the same type of lesions on the nerves.
One site I read said that people that are treated with steroids may seem like they are getting better but they are actually just having the symptoms of the Lyme Disease masked by the steroids
That is all that I could find about it. Most of what I could find was articles were patients stories. I debated about posting the woman’s comment that left on my blog but I decided that I am going to. If you are reading this and would like me to take it down I will just let me know! I think that it is worth your while researching Lyme Disease thoroughly. You will find the blood tests miss 50% of cases. The MRI scan is the same for Lyme Disease as for MS. There is research that shows that many patients with MS have a spirochetal infection- which Lyme Disease is. Treatment for Lyme Disease is antibiotics long term. Treatment for MS -Steroids is contra indicated for Lyme Disease because it allows the bacterial infection to progress whilst appearing to supress the symptoms. Tom Grier a microbiologist wrote 4 excellent lectures found in the right hand column of my blog he was also diagnosed with MS and then found it was Lyme Disease and recovered on appropriate antibiotics.
Lyme Disease is an emerging illness and there is much controversy over it so don’t expect much guidance from your neurologist do your own research and good luck.
They do not yet know what causes MS they only assume it is auto immune whilst the controversy rages over Lyme Disease how many MS patients are being missed when just simple antibiotics can restore health.
I know that she says a lot of what I wrote over but she does have other information in there that I think is great as well. This was one of the hardest MS posts I have written because it was hard to find documentation on this subject because Lyme Disease is a newer condition. I hope it was somewhat helpful though!
Today’s post is written by a lady that found my blog this past week. I asked her and see agreed that I could post her diagnoses story. Her name is Jodi and she blogs at Jodi Bean’s Blog. Please go and give her some comment love. I am always looking for people who are willing to share their stories on my blog when it comes to MS. If anyone reading would like to share their story with my readers feel free to email it to me at margaannemarie (at) yahoo (dot) com.
On September 26, 2008 I was diagnosed with Multiple Sclerosis. At times it feels like it was yesterday and at other times I find it hard to remember my life without MS. MS has become such a huge part of my life, not just because of my health but because of my involvement with volunteering and fundraising for MS. Often times I wonder why I got MS. . . the whole “why me” question. I don’t really know for sure why me but I do believe there is a reason or a purpose so I just try to do all I can to make a difference while I am healthy enough to do so.
Margaret has asked me to share “my diagnosis story” with all of you so here goes! On Thursday, September 25, 2008 I woke up to my alarm clock just like any other day. But this day I noticed that my left food and leg were asleep. I figured I had just slept on it weird so I dragged myself out of bed and got in the shower. When the water hit me I realized that my left arm and side had that same feeling of “being asleep” or pins and needles. I thought it was weird but didn’t pay much attention. So I continued to get ready for work like any other day. When I brushed my hair and my brush went down the back of my head and neck I had “that feeling” there too. I thought, “Hmmmm what the heck is this all about.” Off to work I went. When I got to the office (at the adoption agency where I use to work) I told my two co-workers, Joana and Mary about my weird pins and needles on my left side. I told them I had closed my ankle in the door the night before and thought maybe it was from that. Or maybe it was a migraine? Or a pinched nerve? I decided to google my symptoms to see if I could figure it out and even read about some auto immune diseases including MS. At this point I really wasn’t overly concerned but they were. Joana really encouraged me to call my doctor so I did. Or course the secretary told me he had no openings so I told her what was going on and ask her if he could call me. A few minutes later the nurse called me back and asked me to come in later that day. So home from work I went. By the way I also had a cold and was exhausted. I had mentioned to a few friends and my family that I wasn’t feeling well including my pins and needles.
I went to see my doctor that afternoon and told him what was going on. He check me out both for my cold and for the pins and needles. He did a full neurological exam but stated he wasn’t overly concerned because other than the pins and needles my exam was “normal.” He decided to consult with a neurologist anyways who wanted me to come over and see him first thing the next day (it was already late afternoon at this point). So that was that. I went home and laid on my couch watching tv and being lazy. I wasn’t feeling great due to the cold and by this time my whole left side was numb including my face. I had also told a friend of a friend I would house and cat sit for several days and it started this night. So I went over to their house to hang with the cat and sleep over. The next morning, Friday, September 26, 2008 I went to St. Elizabeth’s Medical Center to see the neurologist. We immediately hit it off because he asked me what I did for work and I told him I was an adoption social worker. It turns out that he is an adoptive father so he starts telling me a little about that. Then I tell him what has been going on and he does a full neurological exam. He too states that he is not overly concerned because my exam was “normal” except for the numbness. He talked to me about some things it could be from like stress, a virus or anxiety (I somewhat took offense to the anxiety comment since to me that meant “maybe this is all in your head” and I knew it wasn’t even though I didn’t think it was something serious). Then he recommended that I have an MRI and blood work. I remember him saying that it was probably nothing and it would likely go away and I would never know for sure what it was from. I thought, “ok that makes sense – probably nothing.” I went back to sit in the waiting room while he talked to his secretary to coordinate the MRI. I called my mom (who was at work) to let her know what was going on and of course she was worried. She and my dad wanted to come over. I told her not to because I was really tired and just wanted to go home and go to bed after the MRI. She said ok (but she lied haha). So the neurologist comes back and tells me to head down right then for the MRI because they had an opening. He tells me that he is on call for the weekend and I can call him if I want to get “the results” but that it is “probably nothing.”
So I head down for the MRI and get registered. Then I wait. At this point I’m still not really nervous. Both my doctor and neurologist have reassured me that it is probably nothing. So I’m just wanting to get it over with so that I can go home and sleep. I head in for the MRI and once in the tube I’m thinking, “well this isn’t an opportunity for a nap.” The banging was rather annoying! This was my first time having an MRI so I really didn’t know what to expect. After a 1/2 hour they pulled me out to inject contrast and back in the tube I go for about another 20 minutes. I finish up the MRI and go to the bathroom to get dressed. When I come out the tech tells me that the neurologist was ready to see me in his office. I told her that he told me I could just go home afterwards and she again tells me I need to go see him. So I was thinking that he was just going to give me the results in person since it was before 5 PM and he was still there. No big deal right? At that same time my parents arrived at the hospital (of course they had hopped in the car as soon as I told my mom I was having the MRI). So I told my mom that I had to go back up to see the doctor. I found out later that she was freaking out but I was still ok. I just remember saying to her “Why would I need to go back and see him.” Denial is a wonderful thing I guess because I was still pretty calm.
So I walk off the elevator toward the secretary and she says, “Hi Jodi I’m just getting your admission paperwork ready.” I say, “WHAT?” She says, “Oh the doctor will be with you shortly have a seat in the waiting room.” We go and sit in the waiting room and I say out loud, “Why would I need to be admitted to the hospital? I’m fine.” All while sitting in the waiting room of the MS Center surrounded by pamphlets. I even get a phone call from my Aunt Cathy who was calling to check on me. I told her what was going on and that the neurologist thought it was nothing but wanted me to have an MRI to rule out MS and blood work to rule out Lyme’s disease and other stuff.
A little while later, the secretary tells us that the neurologist in in the emergency room dealing with an emergency and that we should take a walk to the cafeteria. So we do and I get a tea and we kill some time. We head back and soon after the neurologist arrives and apologizes for keeping us waiting. I sit down in his office and he says, “Well by now you know there was something on your MRI.” And I’m thinking no not really, “What?” He says, “You have MS.” I remember being SHOCKED. But I’m fine. I’m healthy. There is nothing wrong with me. He continues to say, “I am going to admit you to the hospital for 5 days of infusions of steroids. That will help the inflammation go down and hopefully get rid of your symptoms.” I ask, “Can I go home first? Can I work next week?” Seriously I’m thinking about work when I’ve just been told I have MS. What is wrong with me? Haha! So we ask questions, he tells us a lot of stuff, I cry a little and then we head downstairs to wait to be admitted. Still in shock I call my roommate, Stephanie. She asks how I’m doing and I remember telling her not good. I told her that I had MS and I don’t think she really knew what to say. Then I had to ask her if she could cat sit for me that night since I wasn’t going anywhere. She was great and agreed to do that as well as pack a bag for my parents to pick up to bring over to the hospital.
So we wait and wait some more and finally I get up to my room. I think it is like 6 PM by now. My original appointment had been at 11 AM so it had already been a LONG day. My parents leave together so that my dad could drive my car back to my house and so they could get some stuff for me. The neurologist (who I guess at this point is now my neurologist since I’d be needing one) comes to see me. It was so nice of him to come and visit with me on a Friday night to make sure all of my questions had been answered. He talked more about adoption and he shared his daughter’s adoption story with me. It was really nice because in that moment it made me feel more normal since adoption was what I did I could focus on that part of me instead of the new sick part of me.
My parents returned and my brother, Timmy also came to visit that night. My mom had called my 3 brothers, grandparents, aunts and uncle. Luckily are family is pretty small so she didn’t have too many people to call. I couldn’t even begin to think about all the phone calls I needed to make. Joana called me soon after as she was anxiously awaiting an update from me. I had to tell her my news and she too was shocked. I can’t really remember who else I told that night. Strange since I remember the rest of the day in so much detail. But the details of all those phone calls are a little blurry. I do know I had to start my first treatment that night so they got me set up with an IV and started the steroids. I was so exhausted by the time that was done and everyone left that I pretty much just went to bed.
I’m not going to get into all of the details of the next 5 long, boring days spent in the hospital because this post is already super long! But to summarize I had a lot of visitors and felt so fortunate to have such a supportive family and friends. I also got flowers, cards, candy, etc. I guess all I had to do was get sick to be showered with attention and gifts. Haha. Finally on Tuesday afternoon I was allowed to go home. Here I am right before leaving the hospital . You would think I would look much happier to be going home (well to my parent’s home) but I always feel a little silly posing for pictures alone.
I stayed at my parents house through the weekend. I was pretty exhausted from the ordeal so I didn’t do much of anything. I pretty much rested and regrouped. My grandparents sent me the above flowers once I was out of the hospital which was so nice! My mom took me shopping too which was really nice but I was so tired I could hardly enjoy it. I did get a few new things though.
The other great thing about being at my parent’s house (besides that fact that they took care of me) was that my niece, Peyton lives 5 minutes from them. At the time of my diagnosis Peyton was exactly 9 months old. So seeing her “walking” and getting kisses from her was the best medicine. At this age she was pretty obsessed with shoes and really enjoyed the ones I was wearing. I love looking back at these pictures and remember her at that age. She was such a cutie!
So this is my diagnosis story. There are chunks of details I left out because I was getting tired of typing. But from many, many other MS’ers I’ve talked to I think my story is much different. I was diagnosed VERY quickly. I know many others aren’t that fortunate and for this I’m appreciative to my neurologist for sending me for that MRI. I know he was pretty surprised along with my doctor! I guess I’m full of surprises.
Once again I just want to thank my family and friends for their continued support during the last 2+ years. Some days are easier than others but I’m so thankful to know I have so many people to lean on. Without all of you this journey would not be easy. Thank you so much for standing by me!
I haven’t posted about MS in awhile so I figured I would write up something about a new scary symptom that I have going on. Over the last year or so I have started to have a really hard time remembering what I need to do. One time that I can remember vividly was when I was driving home and I couldn’t remember how to get home or where I was even at. It did pass but it is always scary not knowing how to get home. I found stat that says about 50% of people with MS will experience some type of problem with their cognitive function. They also that only about 10% of people get so bad that it interferes with their day to day activities. The MS website that the following functions are more likely to be affected:
Memory (acquiring, retaining, and retrieving new information)
Attention and concentration (particularly divided attention)
Information processing (dealing with information gathered by the five senses)
Executive functions (planning and prioritizing)
Visuospatial functions (visual perception and constructional abilities)
Verbal fluency (word-finding)
They said that the following are less likely to be affected:
General intellect
Long-term (remote) memory
Conversational skill
Reading comprehension
I have started to notice that I don’t many outward showing symptoms but I do have a lot of cognitive and other mental issues. I have also noticed that I have started to have more issues with anxiety and depression than I have had before. I think for me the MS is affecting the parts of the brain that control thinking and emotions. This is the one symptom of MS that bugs me the most. I feel like the disease already takes so much us why do we have to worry about losing our ability to think and function.
On another site I found it listed several ways to deal with it.
Keep a note pad near at all times and write stuff down as you think of it.
Use Post-It notes to keep reminders.
Have a calender that you write down appointments and/or special days in.
Repeat information and write down key points
Keep things in familiar places. Like putting your keys in the same spot every day so that you don’t forget where they are at.
Have conversations in quiet places where there aren’t many distractions.
Keep your mind active by doing crossword puzzles.
Use your cell phones address book and calender to help remind you of things you have to do.
Those are just a few of things they listed. I hope this is helpful to everyone. Like always if you want me to write on a topic just let me know. I am always looking for ideas.
I found this really interesting topic on MS on one of the other blogs I read. I am not going to quote his blog but I went and found a article on it. They have found a way to use stem cells to make the myelin sheath around the nerves that is damaged by when the immune system attacks the nerves in MS patients. The research was done at Universities of Cambridge and Edinburgh. They found the mechanism to make the stem cells start regenerating myelin around the nerves. The myelin insulates the nerves like the the plastic that surrounds a copper wire. When the myelin gets damaged the nerve doesn’t work as well or even work at all. They are also hoping that the research done with help people develop drugs that will promote myelin repair in MS patients . So if there is away to fix what damage has been done then they can reverse the damage and even cure the disease. Now this has only been done in rats but if they can do it there then they are getting closer to trying it in humans. I have always figured that stem cells were going to be the way to helping people with MS and I am so glad to see that it can possible work.
I am out of ideas on what to post about so if you want to know something please leave a comment. I am not going to do this every week anymore because I don’t know what to post about. So please leave me comments on what you want to know and I will write it up for next Tuesday.
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This is something I posted on my private blog but thought that maybe people out there can relate to what I am saying. This post really isn’t about MS but it is something that I am struggling with right now because of the MS and people not understanding my current mood.
I wish people could understand how it feels to one day be able to do something and then the next day not be able to do it. People just don’t seem to understand the amount of frustration and anger that it causes to never know what the next day will bring. It is so hard right now for me to except that I am sick and getting sicker. I hate that I am never going to know from day to day what this disease will bring. I know people think I am crazy, mean and or bitchy but if they want to know what it is like lets randomly make them not able to do things and then change it at random times. I really wish everyone could experience it that way they would know what it feels like and how frustrating it is not knowing what the next day is going to bring. It is so hard going to bed not knowing how you will feel when you wake up or what you will be able to do.
People in my life assume that because I am up and walking around that I am okay but what they can’t see is the pain I am in or the fact that my feet are numb. I wish I had a disease that you could see so that people wouldn’t think I am lying to them about how I feel. I don’t understand why it is so hard to understand that I am in pain and I hurt on a daily basis. I also don’t get why people don’t seem to get the I am sick and not lazy. If I could work two jobs and move out of my Grandparents house I would in a heart beat but it is all I can do to work the job that I have now. I hate living there and I don’t think people understand that. I moved out before because I couldn’t stand it there and I am back to that point again. No one will ever understand just how much I hate being there but because of the huge amount of doctors bills I have and will always have because of the MS I have no option but to live there because I don’t make enough to pay doctor bills and rent.
