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I Don't Know Who This Person (me) Is.

I started seeking help about 5 or six years ago.  I was diagnosed everything from irritable bowl syndrom to a simple you're crazy there is nothing wrong with you.  i gave up for about 2 years and then Jan 3, 2011 i noticed foot droop  - that was new and the unrelentless fatigue.  My family didn't understand, my job didn't understand.  I didn't understand.  I switched drs and for the first time felt a ray of hope.  I was eventually diagnosed on May 28th 2011, and from here it's been HELL! 

I am about to losse my job of 8 years, my husband offers no support and is a great source of stress for me.  I have 2 older boys who are only around when they need something, and then there's the 9 year old daughter, who just doesn't understand what has happened to her mom. 

I am so sad and lonley.  I just feel like giving up.  I wish I had never found out what was wrong with me.  I tried Avonex but that landed me in a mental hospital ( really shouldn't take that if you already suffer depression)  Now I am taking Gilenya and I'm not sure if it's helping or not. 

I live in constant, unrelenting pain.  The only time I am  not in pain is if i take a series of pills to make me sleep.  Often I just hope I don't wake up. 

When I try to inject humor people seem to think that I'm all better.  I am so tired of explaining why (i look so good today, or you don't look sick, and the best one is THAT HAPPENS TO ME TOO!  I haven't found a support group in Indianapolis for Ms but I would really like to talke to people that really do understand.  I'm holding on by a thread of hope. 

Good day all
fieldsmurry fieldsmurry 41-45 3 Responses Jan 11, 2012

Your Response


Hang on! I know exactly how you feel. Hanging on by thin string of hope. You are right, it is tiring listening to people say " oh, you look really good" or " you are so strong, it is so hard to believe your doing so well and able to worry about eveerybody else around you." I am a stay at home mom with a crashed dream of ever going back to work. I too have two small daughters ages 7 and 11. Oth wondering why I can't do the thins I use too and " don't worry you will be back to normal real soon." of course right after I have a big spill on the tile floor. I live on an island where they speak a different language and may who ask " what is MS?" MDs are not sure what to do because very few suffer this disease. I just want to let you know that you are not alone and keep the faith, hope, and love. I am here to chat anytime.

Hey I'm just noticing today and yesterday my arms and legs feel all heavy and I am always tired and there seems to be allot wrong with me but then nothing at the same time. people are confused why I don't do much and as I'm feeling weird and numb all over and I'm typing this I realize I should see a Doctor and ask If I have MS. I've had a problem with sleep since I was 17 and eventually by mid semester every year I would be so tired and stressed to go to school and would sleep in every day. The difference is I think that compared to slackers at school usually just don't care to go but I actually cared and wanted to pass but so why was I getting tired all the time. I definitely feel like something is wrong and that this might be the reason I'm suffering throughout many years. Also my mom is diagnosed schizophrenic and now that i see MS can come from the familly I'm thinking they diagnosed her wrong, and My sister seems to have the same issues since childhood. my mom had her in her 40s and maybe has MS so maybe it's passed down to both my sister and I. : (

Hi i can totally relate to your story. I have struggled and struggled to get a diagnosis of MS. I think mine started in 1999 when myself and hubby went to Brazil for holiday. I basically lost the sight in one eye whilst i was there. My hubby took me emergency room, but by the time i got there my sight was restored. The doctor at the time said I did not have a stroke and was to see my DOCTOR when i got back to the uk. Before i could do that i had another episode. The blindness does not last long but it freaked me out. I saw my doctor and he told me it was just the heat, low blood pressure and not to worry and set me home with nothing, didnt even check my eye or my blood pressure. I thought i was going mad....<br />
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From then i had pain in my eye constantly really bad and burning. Then odd things kept happening to me, balance would go out, pins and needles, fatigue, odd sensations on and on. I was just told it was stress I had a brilliant job and really enjoyed it.<br />
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Then I got really sick couldnt get up in the morning for work, and been off for nearly 5 years now progressively getting worse and worse....I have tons of tests all of them are positive to some extent. I was told i definately had Optical neuritis in BOTH EYES probably when i was in Brazil, and I have had lesions on my spine, and although my Lumbur Puncture showed O BANDS my blood test at the time showed inflammation so the diagnosis was negative for MS.<br />
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I have been slowly going down hill. My doctor though is treating me as though I have MS and has been very supportive. The reason I cant have a diagnosis is my age of 60 and the fact I do not quite meet with the MacDonalds criteria for RRMS. However, my doctor beleives that the attack I had in 2000 should have been counted as a first attack, then i had another bad attack a few years later and I was off work for 6 months with terrible UTI, and pins and needles, and fatigue, this would have been the second attack.....and then on the 2006 this would have been the third attack.<br />
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The pain is relentless but I find that anything the GP has given me has made me feel ill, so for now I only take 1 dizepam at night to try and get to sleep. I can so relate to the pain, yet we get told there is NO PAIN IN MS....<br />
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I so relate to you. I am a Leo strong and proud and I will carry on until i am dead. I never let this illness stop me, yes it slows me down, and yes I dont feel me anymore. I have gone from working with lots of students and teaching and being a brilliant teacher to a nothing. A sad old women who sits at home all day on her recliner chair, having no support from her husband because I still do things, I havent just given up. He does not take me seriously and god help him when he is ill he cant cope with the littlest of pain.<br />
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I wont let this damn illness beat me but because i do try and stay mobile and keep my home as well as I can and look ok, people just think there is nothing wrong with me. IF god made pain a rainbow colour I would be a rainbow. All day everyday it doesnt matter i am in pain somewhere, but I choose to cope with it my way. Perhaps I should have just given up and stay in bed....then that wouldnt be ME.<br />
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I am a fighter that is who I am, and this stupid illness has taken enough of me, its not going to take all of me....not yet anyway.<br />
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Talk to your husband how you really feel. Let your 9 year old help you. I am sorry about your job, I know how you feel about it, perhaps you could do less hours? <br />
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Dont give up fighting you have a family who really do love you, its just hard for them as well to see the person they love in such a sad and bad place.<br />
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All I can do is give you an Internet hug. If you fancy a chat through the email I will be here for you. I know we are miles apart but the illness is the same.<br />
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Hugs Mariax