I will say, though...
- After I was diagnosed, and we decided on 3 times/week rebif injection, and we learned of the flu-like side effects, my mother told my husband that I would be sick every day for the rest of my life and that he needed to be really strong for me. I do appreciate the fact that my mom wants me to always be taken care of, but it disappointed me that she didn't have more confidence in my ability to be resilient and strong.
- —Guest EllyC
GOOD experience
- Hey, I know this isn't along the lines of the rest of the responses, but I just wanted to shine a little light: I first had numbness and blind spots. I went to an optometrist, then an opthamologist, then a chiropractor. ALL of them told me I might have MS. The neuro I went to immediately gave me an MRI and correctly diagnosed me with MS, and correctly filled me in on the symptoms I may or may not experience, making it clear that it's different for everyone. I've lived with it for almost 3 years and I belive that my family and friends' unwaving support, a positive attitude, and a really good set of doctors has helped me beat the disease rather than letting it beat me. Remember, comrades, chin up, appreciate what good things your friends and family MEAN, not what they SAY (because they definitely will never really understand), and make life worth living. =)
- —Guest EllyC
Many Scars
- I was given my diaggnosis eight years after my first episode. I am now 35 and It's a constant battle. First of all my Neurologist handed my diagnosis to a trainee and left the hospital, probably thought I would shoot him because of how poorly he had always dealt with me. When I demanded he return, and I began questioning him, he calmy said " Well, I was not sure how many of your complaints over the years were actually real." I don't own a firearm so shooting him was not an option. He is among 3 of the only Neurologists in the island where I live (Trinidad). Another hurtful classic is my mother's continued reaction which I am trying to learn how to put behind me and move on WITHOUT. She keeps laughing wheen I limp mmaybe she's nervous about my diagnosis and can'tt deal with it. Does not understand my Optic Neuritis or PAIN and made it her business to share an article about a US citizen who achieved her dream of climbing Mount Everest after DIAGNOSIS. I have trouble climbing out of BED!!
- —Guest NATS
look like
- I always get the comment wow you have MS, but you look great like nothing is wrong! Duh what is a person with MS supposed to look like I am just like anyone else.
- —Guest mcarey
Other people using my ms as an excuse.
- i was hanging out with this boy i liked around the time i was diagnosed( i had a crush on him for about 2 yrs prior), and when i told him my feelings about him, he told me i liked him only because i was diagnosed with ms and i needed a shoulder to lean on...which completely upset me..so i made sure he knew that i would not lean on someone i was trying to get to know on a different level, i would much rather lean on my family(my mother has been fantastic through this)...besides youd think that a so-called friend would allow me to lean on him if that were the case, while making sure i knew he didnt not have the same feelings for me. I just can't believe how he could use my ms as an excuse to get himself out of my crush on him. I am fully capable of hearing the truth, which would have not bothered me at all, except for the fact that he had been leading me on up until that point. Jerk.
- —Guest amazed
Are you for real?
- Out of work for 90 days with first severe attach and diagnosed with MS. Spent 3 weeks in hospital. I THOUGHT I looked amazing when I returned to work. One of my senior VP's so excited to see me asked me to come in and speak with him. The first thing out of his "HARVARD GRADUATE MOUTH" did you think you were gonna die? I just want to know what goes through a persons mind when they believe they are dying. After the shock .... I responded...and...you have a great day too..got up and left his office laughing. Me laughing was insult enough and left no doubt that I thought he missed a class at Harvard :)
- —Guest Terri
FOOT dR
- I've had the same foot Dr for 10 years. i've been working on getting a brace for my foot drop problems since May. It is now september. In August he said are you sure you have M.S. you don't present like you have it. Mine is neurological . However my left foot /leg had been collapsing and I fractured the top of my foot. I had to force them to xray it after a month of walking on it. Supposedly he is a great foot dr people drive for miles to see him. Maybe thats why its taken him 2 mos to process the order ( he was already paid for last month" I wanna smack them!!!! Dont they realize my walking well affects my entire body. grrrr. Had to call insurance after repetedly getting no where with foot dr receptionist. They have 800.00 for a brace and keep pushing off ordering it, cuz their soo busy. WTF this is my life I just wanna walk and go back to thrapy to get my balance back!!
- —Guest LYNNE
Not in a wheelchair
- My husband at the time told my kids "she don't have M.S. because she is not in a wheelchair"...well duh this from the man that wouldn't never go to the doctor with me and wouldn't go in the store with me if I used my walking sticks! 20 yrs later he still says the same thing! No wonder he is an ex!
- —Amerel
U have MS because u refuse to forgive...
- My parents came with my husband & I when we went to ER to admit me, per Drs. instructions, and to get a lumbar puncture. (the day before I had already got a full examination @ the ER & an MRI because I was completely numb from the neck down and had a lot of pain when I walked) My husband and my Dad went ahead to open the entrance door for my Mom & myself. While my Mom was helping me walk to get inside, she made the comment "you know why your really sick like this... it's because you refuse to forgive us (your parents) for all of our mistakes we may have made raising you. If we made some mistakes it was all done out of love." I had to tell my Mom that this had nothing to do with forgiveness or lack of and that if she really thought that was the reason this was happening to me then they (my parents) had some real guilt issues and they should forgive themselves & that they were being selfish in thinking that what was going on with me physically had to do with them. Strange, huh?
- —Guest mbk1967
you're not that bad
- i've had type 1 diabetes for 40 years, bipolar disorder for 25 years, osteopenia, major depression and pvd. i admire those here who've dealt w/ years of crass comments. i am usually told by my pcp i'm "too emotional". i had to argue with my her to see a neurologist. i described in detail my imbalance, fatigue, walking into things, clumsiness, and problems walking without leg drag/drop. the 1st neuro did an emg and said i have "moderate polyneuropathies from so many years with diabetes and my past history". the 2nd neuro did mris and eps where i got to see the lesions on my brain and spine. i no longer work, don't drive, have only 1 family member, little support because i'm socially isolated. on days i can take a walk, that's it for the day. my husband asks me how my day was; i may bite his head off or be nice. he says "it's not that bad - yet. you'll get treated soon so you should do whatever you want to do." i CAN'T do what i want to do! he sees what happens when i try.
- —Guest liatris
self pity
- I had to give up work as my MS did not allow me to be active in my hardware job. When my neurologist found out, was told that I should just "get over it" and stop wallowing in self pity. Nice man(not)
- —Guest annemaree
Didn't read enough...(?)
- One afternoon I sat quietly at a cafe and a fairly odd fella decided to strike up a coversation. Being a bit under the weather (recovering from a relapse) he asked if I was OK? I said I was fine but was a little out of sorts following 5 days in hospital from MS. The look was priceless - shock and horror. He offered any assistance he might be able to provide and after letting him know I was just fine, he excused himself to leave.... "Sorry buddy, I really have to go and buy some books. I don't want to get MS too!" OK, so you are probably scratching your head as much as I was! It took me 3-4 days to figure it all out. In Austraia the MS society runs a "read-a-thon", where kids get public sponsorship based on the number of books they read on read-a-thon day. The more books, the more money generated for MS research etc. OK, so put 2 and 2 together and you can see that someone can make the conclusion that reading books and MS may have an association. I still laugh today
- —Guest AussieAJ
drs are dumb
- I once thought drs are supposed to be well educated. That was until I got comments like 'why did you study so much in the past if you knew you would be sick' or 'why did you buy so many insurance if you knew you waould get MS'. Damn it, if i knew, i think I would be God.
- —mser
Are you doing drugs?
- Before I was diagnosed, I went to the doctor and complained about dizziness, lac of coordination, lack of energy, and ringing in my ears. The doctor looked at me with a straight face and asked "Are you doing drugs? What drugs are you doing?" She was implying that these symptoms were from doing street drugs. Well, my mom (who had MS all her life) and I went to the same doctor. After that question, we both found a different doctor!!!
- —joyfullDonna
Aren't you glad you only have MS?
- I can relate to all those "dumb" comments, too. My own mother (who had MS and is no longer with us) said this to me quite often. She said it so much, that I would be very wealthy if I had a $1 for every time she said it! (and I wouldn't have had to apply for SSI!!) "Aren't you glad you ONLY have MS?" She was referring to the fact that I inherited MS while my twin sister inherited my Dad's mental illness. (In her case Bi-Polar disorder) I cringed every time that question came out of her mouth! I don't know where I got MS or who gave it to me, but I want to give it back! Ha! Over the years I have learned to deal with comments like these. I try to educate people and sometimes I just give it to God and let it go! There is really not much more you can do.
- —joyfullDonna
