Tuesday, June 1, 2010

Hey Everyone, I have a couple of questions for you.
First: How often do you get sick? Since I have had MS I never get sick. I haven't had a cold or flu or anything for years. Then immediately after CCSVI, I got strep throat. And two weeks after that the stomach flu. I think that that is a good sign. Only because the way MS is explained to me our immune systems over work, so unless we take the MS drugs our bodies over fight common sickness. So if you can please comment your answers about getting sick that would be great so I can see if I am right or wrong.

Second: How many of you have dizziness as part of your MS symptoms? I hear so much about people having trouble with walking, blurred vision, blindness, numb feet or hands, and closing of the throat. I have had numb feet (during a flare up) dizziness to the point where the entire room spins, blurred vision, closing throat, and aches and pains. When you are in remission do you have little attacks of your relapsing symptoms?

My Dr. told me that every now and then I would feel tiny attacks but it did not mean I was having a relapse. SO, do all of you have tiny attacks that last for 5 mins or so? And then go away? I want to know more about my disease from the people who know best. Not Dr.s but the ones who suffer from this.

So please answer in the comment section, or if you want to email me tisamccay@gmail.com Thanks T

14 comments:

  1. Hi Tisa, Funny you should ask about getting colds. I used to get a cold twice a year without fail. I was diagnosed 10 years ago and hadn't gotten a cold for 9 years. I took rituxan last year and I guess that lowered my immune system and had my first cold in all those years. Unfortunately, that's all it did cause I am still getting worse. I never had relapses, just slowly got worse. Can't walk and now my right arm and hand aren't doing what I want them to do. Hoping for Liberation soon.

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  2. Marcia Lynn AckermanJune 1, 2010 at 8:34 PM

    YES! I've always had mini-relapses, symptoms from the past, sometimes an hour, day, or a few days. I think of it as the variability of all us humans, some moments are just off, some days energy is low. But yes, the dizziness...usually mild, on occasion vertigo like symptoms that you described. For me it is termed 'positional' for the vertigo and I can usually find a position where it stops.
    I've also found it is a good time to stretch or do yoga or massage which helps abate the vertigo type dizziness.
    I used to get sick a lot until I started the Dr.Swank diet (@1990). Since I started it and now I rarely to never get colds or the flu and get well fast (2 days) if I do get sick. from everything I've read on diet and fats having a proper balance of Omega 3's to Omega 6's -it does more properly balance the body's immune system.
    Hope my posting made sense Tisa....

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  3. YES....I get dizzy! sometimes it's just turning my head while laying in bed.It's becoming more frequent too.As far as getting sick...a few sinus problems in the winter,but I've only had the flu once in the past 10 yrs and It was unlike anything I have ever experienced!I had to sign a paper instructing me to call 911 if my condition worsened.I was already gasping for air.Luckily I had a great GP who did some research and called me into his office the next morning.I always thought it was weird that I was never sick.Hmmm...

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  4. Thank you all for your answers. You are all a huge help in helping me gain knowledge about MS. It is also comforting to know that there are people who understand what we go through. You all gave wonderful answers. Keep um coming

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  5. How often do you get sick?
    Once a year if that. I used to get sick all the time but now I don't. That would be because of the interferon drug therapy and the amantadine I take (and I gather that most of us MSers take), both that anti-viral effects, thus keeping most illnesses at bay. Plus, I am homebound so I am in less contact with the outside world, which results in less transferred illnesses.


    How many of you have dizziness as part of your MS symptoms?
    I get dizzy when my fatigue level is high.


    When you are in remission do you have little attacks of your relapsing symptoms? SO, do all of you have tiny attacks that last for 5 mins or so? And then go away?

    We are in a constant state of degenerative activity so minor attacks are probably our 'pseudo-attacks' that our doctors warn us are not really attacks but are in a slight way.

    My neuro told me when I exert my system I will experience my attack symptoms all over again. This is because we have an electrical system and it does not like to get hot and does not like to deal with re-routed connections. Kinks in our electrical system cause it to send messages repeatedly and thus causing us to get tired faster than a normal person and can cause 'flares.'

    For example, I like to cook, when I do so I get hot, as I get hot my left side gets 'angry' and starts to tingle and buzz and refuse to work properly for me. I also get a little dizzy. Once I step away from the stove, drink some ice water, sit down for a little bit...I feel better.

    Looking forward to being liberated some day too.

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  6. Hey Tisa, You might want to go over to ThisisMS.com or another MS support website. I think you would get a lot of input there and could also search and read some older threads and such other topics that might interest you. Take care!

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  7. I have had MS for 30 years. During those 30 years, I still get colds, pneumonia, cancer (twice)and uti's. I don't know if any of this can be related to MS or just because...

    As far as vertigo goes, I have had in on a rare occasion and it is never pleasant. And I don't believe I have ever had mini-attacks.

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  8. brcarrigan, I have been to those sites. I find that people are rude when you post your own opinion on something. So I am getting answers here.

    Joan, Do you take the MS drugs? Don't they lower your immune system? I am so sorry you had cancer on top of dealing with MS.

    I have never taken the drugs. So my theory is that MS causes your immune system to over act, so they give you immune supressing drugs. If you take the drugs you are more likely to get sick.

    Because I have had CCSVI, I think it is helping MS because I started getting sick again with flu and sore throat which I had not before CCSVI. Thanks again for all your answers they put my mind at ease. I had a dizzy spell yesterday for about a 45 seconds ( it felt like an hour) So I immediately thought I was having a relapse. But then I remembered my MS Dr. saying that old lesions can act up every now and then and cause mini attacks. So to be re assured by all of you makes me feel better.

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  9. Tisa - I have had the positional "dizzy" MS symptom 24-7 for 8-10 years. I know how to monitor my dizziness well, so I am able to work/drive full time. I have had MS for 17 years and have seen one of the top MS Neuro Research Doctors in the world for 15 years and have tried most of the traditional drugs for MS, including a trial drug called Zenapax, that helped me move from full time canes walking 10-20 feet, to not needing one, unless I walk 1/2 mile or more or it is really hot. I have had all your symptoms you list and more, with the exception of the closed throat. Anyway, my MS Neurologist has never been able to do anything for my positional dizziness. The whole CCSVI thing makes so much sense to me. How did you get treated in Arizona already, do you have a contact I can try. I am getting in line with others heading to Poland, India and Costa Rica for CCSVI treatment?

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  10. I used to get sick all the time. Every time the weather turned cold, I would get my first cold. If the kids got sick, I got sick. That didn't change with MS. I stopped the DMDs and started LDN about 5 years ago. I no longer get sick. I had started wondering about it a couple of years ago. I still get that crappy feeling, like I was going to get sick, but I never did. This past year I tested my theory, that it is the LDN that kept me from getting sick. My son had several colds and even got his with the flu twice. So, I intentionally tried to see if I could get sick from him. I didn't...

    I had dizziness here and there but never considered it a major symptom.

    I could always tell when a rough time was going to happen. After something happened, that was pretty stressful, within a week I would have an increase in symptoms. Also, with the heat, and especially during allergy season. That was always hell!

    I truly get the need to understand. i always tried to find the rhyme and reason to MS. One thing this disease proved time and time again is that just when you think you had it figured out, there was always another curve ball thrown at you. Knowing my cousin and what he deals with in his own course of MS, we are all very different.

    All the best to everyone!

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  11. No, I take no drugs for MS.

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  12. Hello Tisa,
    I have had MS for 18 years and would say that I have had a full scope of all symptoms Deaf, Blind, wheelchair, walker, cane with all the extras dizzy, vertigo. I have taken most every drug therapy and did not care for the side effects, so the last 5 years has been drug free. I consider myself somewhat bulletproof to a lot of illnesses. Yes I have had the cold here and there and the Flu has been the biggest enemy throughout. My immune system has been depleted and rebuilt so many times and even with all the stuff going on I have still managed to body build and compete. I will be going for the CCSVI liberation in the next two weeks. If I have seen what I can overcome with my present condition I wonder how it will be after.

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  13. Angelo, Please read my past blogs. The ones in May. And you will find how I got CCSVI and how you too can get it from my Dr. in the US thanks Tisa

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  14. I LIVE WITH DIZZYNESS 24/7 NOT VERTIGO SOMETIMES I GET VERTIGO BUT IT DOESN'T LAST THAT LONG. BUT THE DIZZYNESS OH MY , IS TOTALLY A PAIN. IF I AM LAYING DOWN OR NOT MOVING I AM FINE. SICK SOEMTIMES BUT NOT OFTEN I GET LOSTS OF HEADACES MOST OF THE TIME. I STILL DRIVE AS LONG AS I DON'T LOOK IN OTHER LANE TO CHANGE. I NORMALLY STAY IN ONE LANE. HOPE THIS HELPS DEAR.
    GOD BLESS,
    SUE :)

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