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Re: More questions
May 28, 2012
Hi there! Wow. alot of really good questions! Let me see if I can answer them for you in order...

And by the way, terrific that you got 5 hours of sleep straight thru, youll see, it will get easier each night! And, Im glad hubby got you take out! Now THATS what Im talking about! ;)

1. (and 2). Chiropractic and the specialty of neuologic chrioprator are not recomended for MS for the same reason that massage isnt. It stimulates the nerves and unseen nerve damage can be brought into play....it can also cause nerve damage which may be lurking around due to past inflammation. Chiropractors are not medical doctors, even the Neurological specialists.. Yes, there are some exceptional good ones out there, but 99% of them are not. If you risk going to get adjusted and you feel great immediately afterwards but 2-3 days later start having numb feet or toes, you can probably count it being from the adjustement. The golden rule is to avoid anything which could potentially cause you problems. No one needs to be adjusted. Its something we do because we either think it feels good, or because someone has told us its important, but the bottom line is, when done incorrectly, it can cause permanent nerve damage. When you already have an inflammatory nerve disease, you are asking for problems by giving these joints/ nerves and bones unncessary attention.
No one can tell you NOT to go- but, a good MS specialist will advise you not to do it. Even physical therapy needs to be controlled very carefully because a therapist who isnt aware that those heating pads they use, can actually inflame MS or the exercises which they suggest, which might actually stretch certain muscles, can actually damage certain nerves....its a catch 22. You have to choose wisely and not go to just anyone. There are physical therapists, just like their are chiropractors, who specilizes in MS or Parkinson's disease, you absoltuely want to make sure you find someone who has the education to know what they are doing.

3. (and 4) Numbness can last a few weeks, months or in my case, forever. Its determined by how much damage is done to the nerve when the MS attack happened on the myelin sheath. Just to give you a quick analogy- picture the old electrical wire. If the mouse naws on it just alittle, it might short out now and then, and work fine sometimes- if the mouse naws all the way through it, it wont work. If the MS attack is minor, the signal of the nerve to the brain may be random, some numbness which actually isnt all the time- and can regenerate. Remember, the brain will find ways around a damaged nerve or signal to get the information where it needs to go another way....but if that damage is severe (like the lesion in my head which controls my left hand and fingers) there isnt anthing to do...the brain cant rewire entirely broken signals...therefore, my hands and fingers will be numb forever.

So yes, I think its entirely possible that your toes which lasted 3 months were a MS attack, and a warning sign which you didnt have any reason to understand back then. Just like when I was tripping over my own two feet or falling down steps, or laying in the bathroom crying from the hot shower, I had no reason to think I might have MS. When I woke up and my hand was numb, everyone said "pinched nerve". No one put two and two together until the right doctor saw me, took my history and physical and did the right tests! (MRIs).

The heavy arms= that can be the result of a bad MS attack. And it does appear that you had a bad one. It willl slowly get better. Heaviness is usually from heat or overdoing it. Since you are avoiding heat and probably not overdoing it, Id say this is the bodies way of reminding you that you have all this inflammation going on in your body and this is how it is presenting itself. As long as you still have some numbness, its likely that your arms will continue to feel heavy....as the numbness gets better, you will likely see some improvement in the arms as well.


MS triggers. For me, dizziness, confusion and being unable to find certain words- even getting aggravated easily all stems from being overheated. I have to get into the A/ C and cool my body down before I feel better. Another trigger is staying up too late or not getting enough sleep. I get eye pain behind the eye and I get massive fatigue which doesnt go away easily. One late night up without enough sleep can set me back for 3-4 days. These are triggers for me. Fighting with my kids or husband can also be a trigger for me. If I am feeling ganged up on, or unable to make them understand my point of view and it turns verbal - I get physically stupid. I drop things, I sometimes drag my foot when walking- being physically upset about stupid things can result for me in balance issues and gait problems. The most easily explained trigger for me is being overheated. When I am in and out of the heat all day, in and out of the a/c- (my job requires this alot) I get short tempered, I get dizzy, I get nauseaus. I get easily upset. The same things happpens when I take too hot a shower- this being overheated, is my trigger. So I try to avoid it. Does that make sense?

5. absolutely keep your pool pass! Go every day if you can! My advice is NOT to tell anyone anything. Park yourself near the water and excuse yourself when you feel like you are getting hot. Simply say "be right back" and dive into the water. You can spend the entire summer in the pool....long as your feet and back of your neck are wet- youll be better than okay!!! While you are sitting with the girlfriends, if you can, find shade. Can you get an umbrella? Use the excuse that you are watching your sun this summer- too many stories about skin cancer! (its actually true) or, are there pinic tables at your swim club in the shade? Can you take over one of them for "home base" for the family? LASTLY, is ther anywhere that you can go in the a/c if you start to feel sick? For me, even ten minutes in a cool airconditioned room can bring me back to normal. You can pretty much keep your body temp down by staying wet,....but if you would feel sick- is there somewhere you can dissappear to for a few minutes? A snack bar? A restuarant? A ladies room with a/c? As long as you are able to escape the direct heat, (even if it means diving into the water) as long as you can stay wet with the kids by all means, KEEP THE POOL MEMBERSHIP! And, dont tell anyone anything.....you have the concern of too much sun as your excuse and thats all you need to tell anyone.

Now, if you get home at night and find that you are totally wiped out;; you may want to see if you can convince the family NOT to go to the pool the next day till after two pm. The noon time sun is the highest- its easier to find shade and shorten your day when you dont leave the house till 2. Explain to hubby this, and either ask him to take them earlier without you and youll meet them, OR convince everyone youre going to have dinner at the pool the next day and you dont want to leave until early afternoon.....as for the girlfriends, you have some errands to run. Youll catch up to them around 2. No other explanation is required.

6. Im not the best person to advise on this. Ill get lynched for putting my opinion out there on this one- but Ill preface it with "this is only my opinion".
I think youll find a book that says to eat insects and rats to cure MS if you look for it. I know youll find a website that says if you eliminate all processed foods, youll never have another MS attack. I also know that less than 3% of the nation has a gluten allergy. You can go to any allegist and get a gluton test and know within hours if you have a gluten allergy. I firmly believe that all of it is hype- that eating has nothing to do with MS- in every country in the world, there is MS. In china, where all they eat is fish and rice, they have MS. In India, where they eat NO beef, there is MS. IN the USA, where our diets are probably the worst of all, we have MS. In the middle east, where they eat the heart healthy diet high in fish oils and omegas, and low in saturated fats and red meat- they have MS too..... what does all this mean?

In my opinion, it means that we need to do everything in moderation. Alittle of this, and alittle of that. Cutting out nothing that isnt proven to be bad for us...sure, none of us should smoke and we know excessive alcohol is bad. BUt in Italy, 2 glasses of wine is standard. Who is to say what is right and what is wrong? MY opinion is that no diet can change the course of your disease....

7. constipation is a part of MS. Before I was dx, I went to see two different GI docs over 3 years. I was scoped and had all sorts of tests done. I increased my fiber and ate all the things they told me to eat. I was living on metamucil on everything. It didnt change anything. And, they found nothing when they scoped me twice....turns out, this too, might have been a symtom I should have explored further. Everyone I know has constipation problems with MS.....what to do about it? Attempt to eat more fiber and definately drink as much water as possible, and youll see, it cycles...it comes and goes- but it is something we almost all deal with.

8. spouses are a very difficult thing. I wont lie to you. MS can cause divorces and cause problems. At one time, about a year after I was dx, I thought about leaving my husband because we were not on the same page at all. We fought quite a bit. I felt like he wasnt there for me. He refused to go to doctors appointments with me. He got frustrated when twice a year I had to wait 5 days for MRI results (and I was a basket case). He didnt want to help me manage my shots- he didnt understand when I was "too tired" to do things, or not interested in sex....there was quite a bit that went wrong during that period. BUT I learned that mostly, it was ME. I was expecting too much. I was also expecting the worst. Do you believe that if we psych ourselves into beliving things, eventually they will happen? Someone told me about this once, and Im believing more and more that its true. At that time, I was afraid. I expected him to take away my fears....but when he told me "not to worry, everything was going to be okay" I was mad! Why did he think everything would be okay? I was going to be in a wheelchair, he would be wiping my butt, every crazy thought I could manufacture went through my head... Finally. I started talking to people and getting really educated on this disease. I started realizing that the odds of something happening to me were MUCH LOWER than I gave credit to. That I was in control of my MS- not him, not anyone. That my disease was going to play out however it played out, but until it did- I COULD MAKE MY LIFE BETTER.

I went back to school....we all know that story. I got a better job. I started making more money. That gave me self confidence. I also started working with others who have MS- sharing with them taught me alot. I started coming home at night glad to be home and showing my appreciation. When he thew a load of laundry in, I remembered to say thank you. If he grilled chicken and had it ready to eat, I was speechless but I said thank you. I started seeing that he was doing what he could to make my life easier- even if he couldnt take off work to go sit at a doctors appointment with me. We actually started to talk. To communicate our fears and concerns about the disease. This wasnt easy. It was hard to hear him say he was afraid too...but it connected us. Things didnt get better overnight, but they did get better. And, 4 years later, we are in a much better place than ever. It takes committment and communication- but anyone can get through it- just keep in mind that men dont always express themselves like women do- and its very tough for them to feel what we are going through, since they dont have to go through it. WE have to remember to cut them some slack- they arent mind readers and they dont like to see us hurting.....

9. okay. I have no idea where you live so I cant be of much help....but here is what I did. I looked up the national society, found out that there were about 4 groups within an hour of me. I went to 3 of them. The first one had me leaving in tears- everyone there was 70 plus years old, they were all in wheelchairs and it was depressing. The next one was better....all ages and that night, there was a speaker on disease modifying drugs. I was already on Rebif, but I got to hear some stories about other drugs and listened carefully to what people had to say. They made me feel welcomed. The third group I went to, was actually for newly diagnosed people. I loved it. Everyone there, except the moderator, was diagnosed less than 2 years ago. Some, like me, within the past 6 months. We shared fears, stories and laughs- I felt at home. I went to this group once a month for 5 months. By then, I was participating and talking to others before and afterwards. We even used to go out for a coke or cofee sometimes. Finding out that two of them lived within 20 minutes of me opened my eyes. I then got back in touch with the society and asked them why there was nothing closer. I learned that there had been- but that lack of interest had shut it down. I told them I wanted to try again. I had to go to the state society to get alot of paperwork and sign an agreement- mostly confidentiality stuff- and then find a place to do it. My local hospital allowed me to use a room 2 hours a month on a saturday (perfect!). I then contacted my neurologist and asked if I could leave flyers in his office- youre right, he isnt going to give out names- but he will give the patient info if they ask- and he wil allow me to leave flyers on his waiting rooom tables. My first meeting was scheduled for 5 weeks away and I had no idea who --if anyone, would show up. BY the way-- i also left flyers in about 4 other neurologists waiting rooms and gave them to the doctors. And I posted flyers on bulletin boards in the hospital and in local diners/ places that had public interest.

The day of my first meeting, I went to dunkin donuts and bought one dozen donuts and a box of joe. 4 people showed up. We talked about how this was a new group- and how we could spread the word. Interestinly enough, the MS bike ride was coming up and we decided to sponsor a team of our own! All 4 of us rode 5 miles=- but we met another 20 people from the area. The next meeting, 6 people were there....the third meeting had 10 and so on. Of course in the summer, attendance dropped off- and one meeting in December, the week before Christmas, had only 3 people, but overall, we had a good attentance. I am still one of the group leaders; howeve I wont lie to you. Because I was in grad school the past year on Saturdays, I had to turn over the day to day stuff to someone else- who was ready and wanted the job! She did a terrific job and we spoke during the month about what would be done the following month. I also did the newsletters to the group and kept the group infomred of community events. Due to the nature of my job I was also able to schedule some guest speakers who were glad to come and talk about everything from Disability insurance to estate planning and living wills- I had a few neurologists show up and when Tysabri was reintroduced to the public, had someone come and talk about it from the drug company. its actually really fun=- but its like a second job. Its time consuming. If you can find someone to help you, its much easier- and if you can get a few people to come regularly, you will find volunteers to work with you on this! The society also helps quite a bit with literature and ideas.

10. this subject is near and dear to my heart....it is also a catch 22. Sure our friends in Canada have cheaper health care- but they also are forced to wait for referrals and sometimes up to a year to see specialists and get tests! Is that really better than our system? Depends who you ask. I dont agree that its better personally. I do not think our health care system will ever be national health care. I do know quite a bit about the proposed health care reform laws which are coming. Things like "no one will be denied for preexisting conditions- in my opinion is a hoax. Sure no one will be denied- but they can charge us so much money that none of us will be able to afford it.
I also believe that they are attempting to eliminate all unncessary testing and iinapteint procedures, making it harder for people to get correct dignoses's. BUT I do not think its going to affect those of us who already have dx......believe it or not, its all downhill from here- meaning it gets easier!!! You will have to see your doctor once or twice a year to manage your drugs and get checked out...but believe it or not, once you have this dx, its just a formality. There is nothing that can be done for you, and unless you are having a problem, which needs to be treated (probably with steroids) they arent really going to do much for you. Reaction tests, balance tests and coordination tests to see if you are progressing- and document it, but if you arent...celebrate. I wouldnt waste any energy worrying about this right now...there are more important things to think about....like "whats for dinner?" That, at least, you can control.

suggestion? Go rent a movie. Better yet, go TO a movie and sit in the a/c and drone out for awhile.....get into a good book. I just downloaded this shades of grey trilogy that everyone is talking about and I cant believe that I have time to read something other than required reading over the next two weeks! Lose yourself in something you enjoy for a few days and let whatever will be- be. My mom has an expression that says "Dont do it twice". It means when you worry about something and get yourself all worked up over it, if it actually DOES happen, youll have gone through it twice....but chances are, it never will- and then you wasted all that energy. Think about it. (My mom is pretty good at putting things in perspective.)

Youre still doing great- and its been nice writing this book to you- but I have to go back to work now. Im actually working today!
Nikki





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