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  • Hi It's me again and I'm still very tired

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    Old 10-05-2006, 07:02 PM   #1
    spcialk2
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    Hi It's me again and I'm still very tired

    I was on last night ans I was really eager to come back to see if anyone replied to my message but much to my dismay nobody has. Oh well! I guess when you feel sick you often feel very alone also and that's very much how I feel right now. Like I mentioned in my previous message I have has many symptoms realting to MS but my local doctor is afraid to label me with that diagnosis for whatever reason. I have been living for years with the symptoms and they are getting worse and people keep encouraging me to fight for what I need both emotionally and physically and I just don't have it in me any longer. My doctor told me the other day that I should start doing some online research for a second opinion but how can I tell her that I'm completed exhausted for what seems to be doing all of the work. How long does a diagnosis of MS take? How can I get my doctor to understand me or even hear me or take me seriously? I'm tired of the numbness. I'm tired of the fatique. I'm tired of the memory loss. I'm tired of the tremors. I'm tired of my life being put on hold. I just want my life back the way it was before I was sick. I don't know where to go for help with this because noone is helping me or guiding me in any direction. Please someone write back to me. I don't care what you say. I just need some help. Thank you for your time. Kris

     
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    Old 10-05-2006, 08:44 PM   #2
    kiwi girl
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    Re: Hi It's me again and I'm still very tired

    Hi there. I understand how you feel, it's hard to keep your chin up especially when you know you have to because you have a child.
    Are you living in England? Can you go to another Neuro. Start with a clean slate.
    Hope that you are feeling a bit better today. There are people out there that care.
    Take care let me know how you are going?

    Last edited by kiwi girl; 10-05-2006 at 08:57 PM. Reason: Did not show up on post

     
    Old 10-06-2006, 11:14 AM   #3
    rilsam
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    Re: Hi It's me again and I'm still very tired

    I'm lucky I have a good G/P. But he sent me to a terrible neurologist. I had to do the research myself and then told him who to send the referral to. My neuro. told my it could take years before we find out if I have MS. If you don't think your doc is listening, can you find a new one? I understand how you feel. It sucks! Sometimes all you can do is take one hour at a time, and hold on to the moments that are good. Shelly

     
    Old 10-06-2006, 01:24 PM   #4
    MSNik
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    Re: Hi It's me again and I'm still very tired

    HI spcialk2. Im sorry I didnt get a chance to respond to you when you really needed someone- I do know how horrible that feels. So, Ill try to lend you some support now.
    First of all, I have never heard of a doctor telling anyone to do research online. IN fact, I have heard hundreds of them say NOT TO, for the simple reason that although there is some good information out there on the web- there is much more bad info! It could both scare and depress you; and besides you didnt go to medical school (im assuming) so, are you supposed to understand half of what you read?? I know I wouldnt!
    I am very recently diagnosed with MS, and very new to this, and also terrified, feeling depressed and in alot of pain- however I can honestly say that certain individuals here have made a difference. Communicating with people who understand your symptoms, and better yet, have a better handle on them then we do (and I include myself in that group) really helps. How long does it take to diagnose MS? Can be years....can be months...can be less. If you look at the facts there are only so many tests they can run...MRI's, Spinal Taps, are just a few..there are a handful of others. They look for the proteins, the legions, the "white" matter..and all of this adds up to a diagnosis. Of course there are so many other things which mask themselves as MS- Lyme disease, differnt neurological diseases, they are all very familiar. The only way to get a definaitve diagnosis is to have the tests done and see a specialist to intrpret them. Im in the middle of that myself. My Neuro is 99% sure of my diagnosis, but Ive had to wait months to see a MS Specialist in order to get the 100% diagnosis, and thus start any kind of treatment. So far, Ive had IV Therapy, which did absolutely nothing, and Ive started a drug called neruontin, but Ive only been on it 3 days- they say it takes a week or so to know if it will work. IM in pain! Im losing my mind with anxiety! My family is terrified with this preliminary diagnosis...but you know what? You deal with it. You have to. You can sit around and wait for an attack- or you can push forward and take the most proactive approach you can - which means seeing a doctor, forcing someone to listen- and asking qustions until you are satisified with the results.
    You are not alone, Kris. I have numbnesss up and down my left arm (and legions on the right side of my brain supporting the reason) and I have had numerous spinal taps, tests, and been poked and prodded. Ive cried more than my share of tears. I have made myself sick with anxiety. And, I have realized that none of this did me any good- the only way that I feel even halfway normal is to do halfway normal things. Going out to see a movie is a good one- makes you forget for awhile....and trying to stay involved in anything you care about- for me, its college. Im an online student, who is definately struggling to keep up, my brain feels fried, but my fingers really are! This week, I looked into voice recognition softwear for my computer, with the hopes that next week I can buy it, start using it and learn how to "talk" my way thru my online courses....anything which uses the brain, and gives you something else to think about has to be good for us!!! Listen to me, the big cheerleader, check my posts, only a week ago, I was crying out exactly like you are...but, then again, a week ago, someone told me what I am telling you now. YOU CAN DO THIS. And, YOU ARE NOT ALONE IN THIS.
    We all care about you...and we all know that there is nothing you can do alone- you really need the proper medical attention. If you arent finding it where you are- look elsewhere. Find it, its there...but it looks like you are going to have to be the one to reach out to it. Also, if you havent contacted some sort of MS referral network which specializes in a nursing team, you should..they might offer you suggestions on how to get yourself more help. Im sure no matter where you are, there is a free phone number to call...check your local hospital for help- just dont wait for it to come to you. PROACTIVE is the name of the game.
    My heart goes out to you...and probably within the next week or so, Ill be the one posting up here begging for someone to give me some reassurance. It goes like that...hour by hour, your emotions are going to jump all over the place. The best thing I can tell you is you arent alone.
    hugs to you.
    nikki

     
    Old 10-07-2006, 05:05 AM   #5
    Pegxter
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    Re: Hi It's me again and I'm still very tired

    Kris, I am right there with you and have been so frustrated. I see other people are having the same problem I have been seeing doctor, specialist, after specialist and have been referred to my 3rd NEURO!! Nobody seems to think it's MS, even though all the symptoms I've seen match. The fatigue is the worst. Well, I will see what the 3rd neuro says (there is an advantage - he is with the MS Center of Atlanta, so maybe they are thinking MS now?? I can only hope!)

    Nikki, you say you had IV. Was it an IV of steroid (maybe solumet- spelling?)
    I had 2 rounds of those, they thought I had sarcoidosis. Now, they say since the IVs did no good, it couldn't be sarc.

    Appreciate any comments or help.
    Peg

     
    Old 10-07-2006, 06:50 AM   #6
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    Re: Hi It's me again and I'm still very tired

    Hi Pegxter
    You asked about my IV therapy. Solu Medothrol...(Spelling) Its prendisone adminstered thru my arm for 5 days ..(1 Gram a day). Thats the single most common way to treat excaberations when they flare. Unforutnately, the side effects of prendisone vary from emotional anxiety and distress to feelings of Euphoria (i wish) and of course the ever popular overeating and puffiness. For me, other than becoming an emoitional basketcase for 5 days- I cried most of the time and hated the world- it did absolutely nothing for my symptoms of burning, tingling, numbness.....they say that this is they only way they can treat the symptoms- and they also say for about 20% of the peple they give it to, it doesnt help...guess im in that 25%.

    After complaining profusely that SOMETHING better start to work, I was put on Neurontin- a pill, twice a day- and after 4 days of being on that, I would say I have about a 25% relief...its doing something, not a whole lot right now, but something..and at least my emotions are no longer ruling my world.
    They also say that Neurtonin can take up to a week to work, and I still have a few days to see if the improvement continues at all.
    Great to hear that you are seeing a good specialist. Im in the NorthEast, and Im seeing a highly respected highly referred MS Specialist myself this upcoming week..Im so thrilled to have another chance to talk to someone about my symtoms and get another opinion.
    Good luck to you. Keep us posted.
    Nikki

     
    Old 10-07-2006, 03:52 PM   #7
    Pegxter
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    Re: Hi It's me again and I'm still very tired

    Nikki, glad you are getting some relief. I guess 25% is better than nothing. Yeah, I've been real emotional too. I have had 2 pity parties lately because I have felt so bad and this has gone on so long, and there hasn't been any light at the end of the tunnel....till I found this board!

    So glad to be able to talk to others who are going through the same thing. My legs are extremely tired today and don't want to function. I've been laying on the couch watching tv all day! Yeah, steroids puffed me up too and just made me want to eat constantly! Well, hope things get better for you.
    Peg

     
    Old 10-08-2006, 11:49 AM   #8
    kathleenm1
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    Re: Hi It's me again and I'm still very tired

    Hi all,
    Only have belonged to this site for 2 days, and already feel like you're all family. Peg, I too have all symptons of MS, and after my third neorologist, and now no insurance, I,m still thinking I have it. I was wondering if besides all symptons you mentioned, do you have long, very bad, bouts of hopeless depression? I,m going on about my 3-4 week of it, and it has by far been the worst, and longest that I,ve experienced in the 4 years of having whatever the heck I actually have. Call it what the DRs. may, you and the rest of us know our bodies better then any Drs. We are not stupid people, and think all have done our homework extensively on this subject. The symptons are there in front of us. We know, but because a few tests say we don,t have it, they will not treat us for it.
    I was coming out of the drugstore a few months ago, when a man in a wheelchair stopped me and asked why I used a cane. I went on to explain about the symptons to him, and after listening while I rambled on, he too had gone 6 years with what he thought to be MS. The DRS. kept telling him it was NOT MS because all tests were coming out negative. Finally, a DR. diagnosed him with MS and starting treating accordingly.
    He is still in a wheelchair, but said alot of the pain, and other symtons were so much better.
    If only they would listen, this would probably be the case for more then a few of us. I know the feeling of dragging yourself around, and not feeling like you can even lift your head most days. but have faith.
    These people that are answering you are a GOD SENT. I think having someone just to be there when your hurting, lonely, and confused, can sometimes be better then all the medicines in the world!
    My thought and prayer are with you, and also with every wonderful, caring person on this site.
    Kathleen

     
    Old 10-08-2006, 03:26 PM   #9
    Pegxter
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    Re: Hi It's me again and I'm still very tired

    Hey Kathleen, thanks for the reply. I have depression/crying jags. They don't last but 2 or 3 hours usually, but I may get them 2 or 3 times a week.

    As far as the tests go, I don't think the doctors even look at them sometimes. My neuro wanted me to bring all my MRIs I had had (at another neuro office) in to his office so he could look at them. Later, at another visit, he acted like he hadn't seen them and I hadn't brought them in. Well, I argued with him since I KNEW I brought them in and he even went somewhere for a few minutes to "supposedly" look at them but never commented.

    So after I argued, he waved it away with his hand and said, "Anyway, just bring them in next time".

    And don't ever bring up that you think you have MS and start naming your symptons. I think it's an ego thing and they don't want to think you are already suspecting. It has to be THEIR idea!! It's not like I want MS, but when all the symptoms match up, it's kind of obvious! Oh, well, let me get off this soap box. Doesn't take much to get me started, huh?\

    Well, I hope you get some help soon. Good luck, Peggy

     
    Old 10-08-2006, 04:01 PM   #10
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    Re: Hi It's me again and I'm still very tired

    Hi Peggy,
    I think you are soooo right about if it,s not there diagnosis, they don't want to hear it. I feel like just screaming when they(the dr.) just wave you off like your just plain stupid. It's not like any of us want this horrible, nasty, sickness. Well, know this, you and every person on this site will be in my prayers starting now, and everytime I think of all of you. What a wonderful thing to have kind and caring people like yourselves to talk to.
    I don't feel so very alone anymore.
    Feel better, and God Bless,
    Kathleen

     
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