It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board

  • Does it sound like MS?

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 04-19-2012, 12:46 PM   #16
    social357
    Junior Member
    (female)
     
    Join Date: Mar 2012
    Location: Portland, OR
    Posts: 44
    social357 HB Usersocial357 HB User
    Re: Does it sound like MS?

    Thank you for your support. I'm so ready for a diagnosis. My husband doesn't see any point in my pursuing it, since I'm going to feel this way anyway. In a way, I agree. I'm already getting used to the ups and downs of how I feel and know more or less what to expect from my attacks (can identify them sooner now). But I can't get a lot of help, support, medical attention, or even down the line, disability payments without a diagnosis. I've lost my job once due to being unable to work (unable to even walk or sit in a chair without falling out), and if I don't push through this as hard as I can, I'll lose the job I have now too. I'm my boss's only employee; it's not like anyone else could fill in for me if I was out for a month. And, I just NEED to know, yes it's X.

    I do have mild depression, and take trazodone for it, and it helps me sleep too. Crying at the doctors is a thing that happens to me all the time. I have trouble stopping it, especially when I can see that I'm in another downward spiral and this doctor is insulting and/or dismissing me again. It's like frustration, humiliation and anger all come together and I can only cry. I've had to fight doctors for so long but it's not making me cry less; that makes it difficult for me to get my point across sometimes.

    I try to bring my husband with me to appointments, but he is clueless. He doesn't jump in and ask questions or stand up for me most of the time. My sister is a vet; I need HER to come to the appointments with me. I was describing my leg pain to her and she said that gabapentin would probably help me, becuase she prescribes it to dogs with nerve pain. I looked it up later and see it is used in MS for humans too.

    On some level, I believe this will be solved someday, and I'll know what's wrong and be able to better cope with it (I'd be so much healthier if I didn't have to work full time; even without an attack it wears me down to my core). It doesn't stop it from being very upsetting and difficult to deal with. How many doctors need to tell me I'm making it up before I start to believe it? If I had a diagnosis, I'd know they were full of crap, but I don't, so I always wonder if they're right.

     
    Sponsors Lightbulb
       
    Old 04-19-2012, 01:16 PM   #17
    MSJayhawk
    Senior Veteran
    (male)
     
    Join Date: Sep 2007
    Location: Arizona, USA
    Posts: 9,811
    MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
    Re: Does it sound like MS?

    Your depression, I believe, will diminish once you know what you have. The unknown is often more stressful than the known. I have been at the bottom of the barrel and have cried in my neuro's office when I cannot write nor can I speak coherently. Do not let your emotions stand in your way nor should you accept any guilt or blame. If you have MS, doctors still are in the proverbial dark about what causes it or how we acquire it.

    Your husband, being a male, does not handle emotions well. Men deal in facts and numbers more than feelings. Once your husband knows what you have, he may come around to be more understanding. Some people do not handle chronic disease well either because they are either hoping it will go away or they are in grief. Get some informational brochures or even a book. There are many good ones available and you can order some via the MS Association or MS Society. I know the MS Association even has a lending library. Once your husband knows what you have to deal with, he may become your advocate. For now, be happy that you are blessed with a sister who will help.

    As to meds for nerve pain, these are usually designed for nerve pain related to other diseases and are, sadly, rarely effective for MS. They may work short term, but their effectiveness quickly wears away. You may need to find other methods to deal with the pain if you have MS.

    If you have MS and you need to take disability (I did in 2002), there is no shame in it. You should check the SSA website and see what documents you need to present for disability. Only present what they require (no extras). The initial problems are often attributed to extra documentation which requires a manager to deal with before it can be moved forward. Your neuro should be able to help you with this too. I printed out a checklist from SSA and gave a copy to my neuro. I was approved 2 weeks after application. The SSDI payments come in a lump sum (6 months accumulation from the date of approval) 6 months after approval. Medicare, unfortunately, does not kick in for 2 years unless you have the fatal variant (quite rare and you would likely not be reading this if you had it).

    Stay strong. It gets better. I have been dealing with this for nearly 35 years now. There will be good days and bad days, but whatever comes your way know that you are blessed each day. Focus on your blessings and count them. You will see that your cup runs over and there are many blessings you can pay forward.
    __________________
    MS diagnosed since October 3, 1982
    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    Old 04-19-2012, 03:05 PM   #18
    social357
    Junior Member
    (female)
     
    Join Date: Mar 2012
    Location: Portland, OR
    Posts: 44
    social357 HB Usersocial357 HB User
    Re: Does it sound like MS?

    My right arm just went "asleep" from teh shoulder down. I didn't think anything of it, and kept shaking it trying to wake it up. Then I felt panicky and then I went, "OK, if this IS MS, it's not going to kill me. It will go away again. A sleepy arm is ok." *deep breath* When my boss's last client leaves, I'm going to see if she'll let me go home and rest. Well, rest as much as I can with the kids running around! (Husband works swing shift so he's not home).

    I think I read you homeschooled your kids. Is that right? I am really considering doing that. I love teaching. I started school for becoming a teacher, but then this economic crisis hit and well-experienced teachers aren't even able to get jobs so I quit (plus, it was during one of my episodes and I had to drop all my classes that semester). My 5 year old is learning how to read greatly, and my 7 year old is SO smart but hates busy work (exactly like my husband, who can fix any machine even if he's never seen it before, but doesn't have a college degree and did badly in high school). I would love to do it and think it'd be really good for them. Plus I've heard Portland is a great place to homeschool (as opposed to Tucson, where we used to live and it isn't, community-wise).

    Sorry for the ramble. Just trying to distract myself from my weird arm. I'm seeing my regular PA tomorrow (not even a doctor and vastly more helpful and attentive than anyone else I've seen so far!). Apparently she can order an MRI for me. I should have asked her directly instead of trying that stupid neurologist. Oh well. I'm learning.

     
    Old 04-19-2012, 03:34 PM   #19
    MSJayhawk
    Senior Veteran
    (male)
     
    Join Date: Sep 2007
    Location: Arizona, USA
    Posts: 9,811
    MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
    Re: Does it sound like MS?

    No worries.

    Yes, I home schooled. I used a national home school curriculum out of Florida (Pensacola). They have streaming classrooms, DVD, mail-in exams/testing, or Parent taught. When I was bed ridden, I tried the DVD, but it was too slow for my youngest. I went to teaching so that he could move at his own pace. He left public school in 3rd grade after skipping first grade. We tested him and he moved from 2nd to 4th grade. Afterwards he progressed from the fourth grade through high school in 3.5 years. He now loves college. I also took my oldest son out of public school and he finished his last two years at home. He is also in college too and has enjoyed it. My youngest was never given "busy work", but I had to add classes to keep him busy. I taught him Japanese, graphic arts, Microsoft Office Suite. He had to write papers, do one research paper each grade level, and he had to read from a college bound reading list. He was still able to finish with plenty of play time each day.

    We did not follow a "semester" because he would move through a grade level at his own pace. He went through the 4th grade in 6 weeks, 5th grade in 7 weeks, and went directly to 8th grade. From 8th grade forward, he did the work for each grade level.

    I taught him while seated in my power chair. We paced the day with morning classes and then afternoon classes. This allowed me to rest in between. The school had lesson plans available. These were helpful. I found that he could cover 3-4 days worth of material each day. Now, my oldest did not. He was comfortable in one lesson per day. You can time the learning to them and to your ability.

    On days when I was bed ridden. We still had classes unless I could not handle it.

    I hope that your arm feels better and soon!!
    __________________
    MS diagnosed since October 3, 1982
    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    The Following 2 Users Say Thank You to MSJayhawk For This Useful Post:
    dogmum (04-20-2012),social357 (04-20-2012)
    Old 04-20-2012, 11:35 AM   #20
    social357
    Junior Member
    (female)
     
    Join Date: Mar 2012
    Location: Portland, OR
    Posts: 44
    social357 HB Usersocial357 HB User
    Talking Re: Does it sound like MS?

    I saw my PA this morning. She read my illness time line from 1998 to present. She read my list of symptoms and concerns I had written down. She asked if she could keep the copies because she wants to go over them with her supervising physician to brainstorm ideas. She has ordered me an MRI and even though it's going to make work for her to prove it to my insurance that it is indicated, she said she is pretty sure she can make a good case with the symptoms list I provided her and my medical history spanning back 9-10 years. (Well, it goes back to 1998 as I mentioned, but that is other illness stuff, like when I had a super horrible case of mono when I was 17).

    So even though it's making a lot more work for her, she's taken it on. I wish I'd asked her in the first place! I knew she was awesome, but I didn't think she could order an MRI, or I never thought to ask.

    She also wanted to run more bloodwork, which is fine. It has always come back normal, but maybe one of these times it won't, and we'll want to catch it. She ran a complete CBC, thyroid test, and a few others. I asked her to make sure to check my blood sugar levels too. I hadn't been fasting, but I hadn't had any sugar at breakfast so hopefully the levels are ok. She might be running another ANA test for lupus as well, I can't remember.

    So at least I'm getting started now, rather than waiting 3 weeks to get into the MS Clinic and then another week for an MRI. Feeling much more optimistic. The lab technician who drew my blood was having a bad day. Guess the lady before me had been rather rude to her and they were short 3 staff people so she was swamped. She couldn't get my vein, then she got a vein and it filled the vial half full and then stopped, so she had to stick me a third time. She felt so bad but I teased her kindly, and got her smiling again. I have no issue with needles, so what's an extra poke? I didn't want her to feel so badly about it.

    So... I'll know about my MRI within the week, the PA thinks. Still hard to wait but it's coming. Maybe I'll finally have an answer (and maybe I won't...but I don't want to think about going through all this again with no answers so I won't right now).

    Last edited by social357; 04-20-2012 at 11:53 AM. Reason: more stuff

     
    Old 04-20-2012, 11:55 AM   #21
    MSJayhawk
    Senior Veteran
    (male)
     
    Join Date: Sep 2007
    Location: Arizona, USA
    Posts: 9,811
    MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
    Re: Does it sound like MS?

    All in all, I think you are moving things forward! I hope things go smoothly over the next few weeks as you wait for your MS appointment. Stay strong!
    __________________
    MS diagnosed since October 3, 1982
    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    Old 04-21-2012, 11:04 AM   #22
    dogmum
    Member
    (female)
     
    dogmum's Avatar
     
    Join Date: Nov 2011
    Location: North Italy
    Posts: 99
    dogmum HB Userdogmum HB User
    Re: Does it sound like MS?

    Quote:
    Originally Posted by social357 View Post
    ............(Well, it goes back to 1998 as I mentioned, but that is other illness stuff, like when I had a super horrible case of mono when I was 17). ...........
    This is really interesting to me since it's quite similar to how my story goes. I, too, had a horrible case of mono about 12 years ago. Before having mono I never had any health issues at all and now looking back, I believe that what I had right after was likely my first flare if what I have now turns out to be MS. I hope you'll keep us updated as to your progress and I'll be hoping that we both get our answers soon.

    Wishing you well...
    __________________
    Laura
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

     
    Old 07-06-2012, 02:43 PM   #23
    social357
    Junior Member
    (female)
     
    Join Date: Mar 2012
    Location: Portland, OR
    Posts: 44
    social357 HB Usersocial357 HB User
    Re: Does it sound like MS?

    Just in case you were wondering, I had my MRI and it was clean. My 2009 MRI was clean also. The neurologist said after 9 years of symptoms, I'd either be showing neurological signs (passed my neuro test just fine, minus being a little off balance) or have lesions on the MRI, so she was "confident it's not MS." She referred me back to an otologist for my ears (especially since my hearing loss is progressing. I lost 10 db in the past 3 years).

    My new otologist doesn't know what's wrong with me either. He said if I hadn't JUST had a full neurological work up, he would insist it was neurological and send me for an MRI. But since I just had all that, he is confused but trying to think of what it may be. Possible auto immune ear disease or Meniere's Disease, though neither of those match all my symptoms either.

    So anyway, not MS and I thank you all for your support and kind words, and wish you the best.

     
    The Following User Says Thank You to social357 For This Useful Post:
    dogmum (07-09-2012)
    Old 07-06-2012, 02:48 PM   #24
    MSJayhawk
    Senior Veteran
    (male)
     
    Join Date: Sep 2007
    Location: Arizona, USA
    Posts: 9,811
    MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
    Re: Does it sound like MS?

    Thanks for the update. I am glad you do not have MS, but I hope you can find the cause of your ongoing concerns. If things change and you are pointed back in this direction, please let us know!
    __________________
    MS diagnosed since October 3, 1982
    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    Closed Thread

    Tags
    dizziness, heat sensitivity, mysterious symptoms, pain, vertigo



    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 11:33 AM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!