FRUSTRATED With Multiple Sclerosis

Every second.  My life HURTS.  Noone is able to understand me.  Some of my friends don't understand that I can't do things they do.  A simple walk around the block.  For me, IMPOSSIBLE.  I have to manage myself to just be able to get my kids off to school.  And then, I am so exhausted I can hardly move afterwards (yay school is done for summer).  I am deathly afraid to go anywhere by myself.  My legs get stuck.  People look at me like I am crazy.  I get these horrible migraines and my eyes go funny.  I can't drive most of the time, I am scared to.  I depend on my husband for everything but he works.   Even little tasks like doing one load of laundry will send me totally exhausted for the rest of the day.  O ya I can't forget choking on my food and my psych. making me cry at almost every visit...  Anyone else completely frustrated with MS and need to vent, DO IT HERE!!!  So far I am getting no treatments.  I'm so scared to go to doctors because of the way they treat me.

Thank you for reading my story!!!

Neveah Neveah
18-21, F
12 Responses Jun 9, 2008

Hey, do you have silver fillings? Mine caused 70 symptoms of MS: from ataxia, numbness of my toes and fingertip, "a burning brain," loss of peripheral vision, hypoglycemia, depression/anxiety/mania, memory loss, chronic fatigue, chronic sinusitis, vertigo, bladder infections, and a host of other symptoms.<br />
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This is because silver fillings are 50-70% mercury, which is released into the body as ethylmercury vapor. Anywhere from 3-29 micrograms of mercury are released by these fillings every day. The symptoms of MS and mercury poisoning are effectively the same. I got them removed and most of my symptoms are gone, I just have to spend a few years getting rid of the residual mercury from my tissues. Believe me or not, I honestly don't care. It's not going to be the case for everyone. I just know it worked for me.<br />
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Also if you've been exposed to a lot of thimerosal from vaccines, this could have triggered it. Also the government is now admitting that Hepatitis B vaccines can trigger demyelinating diseases. Check out the FDA's website if you want to confirm there is mercury in vaccines. No level is safe, considering it's more toxic than lead and arsenic. It is the most toxic non-radioactive substance known to man. I have nothing to gain telling people this, only the hope that someone can recover the way I did. It's my hope.

I completely sunk this time. Back to square one when I thought things were going well they are not. I finally broke down with the pain, etc. Getting out of bed is an awful task. Thank God my husband is home from work right now.

Its great to finally find a great doctor! I have a few great ones, but they don't treat MS. I was sent to an MS specialist, but he wasnt taking new patients. Well, going over his head to make an appt, he was VERY ANGRY with me and shoed me out the door. I won't ever go again, thats for sure. When I venture out, I'm usually down for a whole week. Takes me that long to recover from that. I am on some better meds that help me stay awake. I've also lost a few. TY, for your inputs!!!!!

I know the feeling too well. What I find the most frustrating is the situation you're in with some dr's. In my 6 years with the condition I learned that some dr's are actually afraid to say a patient has MS save for the really brave an experienced ones. Thank god all my dr's agree on the same thing and will put their medical practices on the line to vouch for me. I hope you find a dr you can trust because that is the first step to treating this disease. It took a bit but I found an awesome MS specialist and she listens to everything I say, plus she can be hilarious which is good for the spirit.

These are the times when we need our humor the most. Because nobody knows or believes in our pain until something unfortunate happens to them. Have you noticed when the nonbelievers suddenly come out in forces to tell you how bad they feel for you?<br />
This usually happens when you are feeling great, looking better than ever, and actually out of the house with a friend( which you can probably only do a few times a year if you are like me). <br />
I take it with a grain of salt, exceptwhen it comes to the doctors. They ought to know better than to be so callous. I finally have a neurologist I like. I can tell him about a symptom, and he does not hesitate to take out his prescription pad. He believes in my pain, he seems to have an understanding of the disease. I barely have to speak to the man, he can finish my sentences. <br />
My memory is awful. It's a good thing to have someone finish your sentence when you are too exhausted to find the words in your own brain. I live in the Northeast. If you live in the northeast, tell me where and will tell you all the doctors to avoid,or the one I have. Whichever you'd prefer. Bless you and yours.

Thank u, I've gotten better. Positive change works. I've pushed and built some muscle I lost. <br />
God Bless u!

i feel physically you are not in ms, in mind some were you have that feel of being in ms, but my friend you can come out of the same with some positive change. take care

Thats kind of sad but he must not have been for her. God has a special person for her. He did for me. I am married to a wonderful man that takes great care of me and my children. It can happen!

Thank you also for your prayers. Aside from all she has gone through her boyfriend of many years has called of the wedding and we still are kind of in shock. She is strong and I know God guides her and she wil find someone that will love her and accept her as she is. Her ex is also a a doctor. We are still in awe. She keeps going on and I know that down the road she will have a lot of good things awaiting her. Bless you

Thank you, I will add her to my prayers, too. There are lots of treatments out there and thank God hers was discovered early! My doc says I am in the very early stages too, but the other doctors I see aren't yet to say this is MS yet. No treatment for me . I gotta wait till mine gets way worse, I guess. She was one of the fortunate ones that has a definate diagnosis. <br />
It isn't fun living with this. But she can still live a pretty good full life, and not worry about having children, as I have five.

My niece that happens to be a young doctor starting her residency has MS. She is just 28 years old with a whole life ahead of her. It has been touch on the whole family but her faith keeps her going. We are thankful that it was discovered pretty early. She is young beautiful and full of life. We pray that she continues to do well and we have placed all our support, love an faith behind her. <br />
I will include you in prayers and beleive, there are many out there that understand. God Bless.

Hello I have MS to, and I understand your pain and frustration. People just dont understand that you cant walk around the block anymore, they have no clue to what we go through. What gets me is they think im faking. My son who is 15, always say I am out of shape because I am out of breath walking up 6 steps, the legs it feels like they take all your energy just to move them. The numbness gets on my fricken nerves. I do take my injections, I am on Copaxone, which leaves lumps all at my injection sites, but so far I have not had any new lesions in my brain, or cervical spine, so far maybe because my next MRI is in Jan, she said come back in a year, Im like oook a year oh well. But that is ok with me because I got really tired going to the doctors, and my doctor normally comes in at 2 in the middle of the heat, and boy do I suffer really bad when its hot.I dont work anymore cause not only do I have MS, I have an awfuuly bad back, so I can feel the pain its everyday and allday long.One thing I am happy for is EP, because there are not manu who understand, but we do thats why you can write me anytime, complain about your pain anytime, I understand nice to get to know you.