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Hi everyone....hoping you are happy and healthy today!!! (one day at a time)

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Multiple Sclerosis
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Posted 1/22/2009 4:11 AM (GMT 0)
     Hi! I first want to say that I have been reading posts on my cell for the last 6months or so.  Every time I research a new sign or symptom I end up here.  I'm very excited to become a member of this forum not only for my benefit but to help and be supportive of others as well! A little background on myself;  I am single, 38 years old, with 3 wonderfull animals, have no stresses (other then healthwise) as job is a good one- although currently on short term disability. I have not been diagnosed with MS, but am suspicious of this being a cause of current ongoing symptoms. In 2003 I had a sudden case of severe benign vertigo, could barely crawl to the phone to call 911.  This continued with no appetite and extreme fatigue for 2 weeks.  After this I felt flu like symptoms throughout the years.  I've been diagnosed with Fibromyalgia since 2005, because of severe muscle pain-sometimes resulting in E.R. visits. Lyrica has alleviated the muscle pain but in the last 6 months I've experienced severe bone pain-often level 8-10 horrific pain. It is alleviated by pain pills and lidocaine patches but I won't use them until severs pain. In Sept. 2008 I stopped having an appetite at all for 20 days ( and lucky me I don't lose but 3 pounds!), then dry cough which I didn't care about but dr. said I was wheezing and had mycoplasma infection with O2 sats of 92%. Still feeling fine I suddenly experienced extreme s.o.b. which continues off and on to this day. I limp all the time now, feel pain wether I'm sitting, sleeping, lying, or standing. Sleep is constant 18 hours plus. This week I slept Tues.-Sun. up maybe 2 hours a day by forcing myself. Recent sleep study says my sleep quality is at 41% and Rheumy says this is why pain but can't explain why poor sleep. My nuero problems are tremors, right now almost constan head tremors, the limp which worsens the weakness of right leg the more I'm on it, I walk like I'm 90, can't tolerate any exercise, the fatigue, seizures at night, and numbness which can cover my whole body feeling like paralysis.  Currently seeing neuro for EEG, and MRI.  Hope to find something because can't work and sometimes don't have the energy to pet my animals! Sorry this is so long, I welcome meeting people and having a support group through this unending hell of illness.  Thanks for your time I know it is valuable!!  Take Care everyone, and I wish the best for you and yours:)
Posted 1/22/2009 5:06 AM (GMT 0)
Welcome Brownie! :-)
Posted 1/22/2009 8:15 PM (GMT 0)
Brownie,
Welcome, glad you found us! We are here to support you and to help you anyway that we can. You will find all sorts of people here that have a varying type of MS and any questions that you have, someone will be sure and answer for you. Also, on Mondays we have an MS Chat that takes place around 5:00 Mountain Time. Hope you can join us there sometime. Take care and God Bless you!
Posted 1/23/2009 1:10 AM (GMT 0)

Hi Brownie,

You should also post on the lyme board.  Your mycoplasma infection could be causing your problems.  I hope you get some relief soon. 

Posted 1/23/2009 2:11 PM (GMT 0)
Hi again, brownie.  Here is a site that explains the MS diagnostic process.  I hope it helps.

http://www.mult-sclerosis.org/diagnosingms.html

Posted 1/24/2009 9:40 AM (GMT 0)
Hello everyone, and thank you for the welcome! These diseases seem to all be so closely related it's confusing and scary all the possibilities. It's been over 1 month that I have been home from work (and I have worked since age 15!), my concern is that I've deteriorated so rapidly in this time. Lot's of night seizures, the fatigue is so bad I'm one step away from being bedridden, my animals are the only things that force me to get up, but then I'm right back in bed. I often don't change my clothes or take care of myself because I don't have the energy. I just need to vent a little as I don't want to burden friends and this fatigue they can't understand and I know you guys can. I used to never go outside even to check the mail without make-up on now I don't care at all, rarely feel like checking the mail anyway LOL! But if I've learned anything it's to go to the Dr. with some make-up on and a smile on your face so they don't say it's all depression UGH! I'm not going back to GP because he tells me all these tests are a waste of time and that all will be normal, but he's the one who sent me to theses Drs. so shouldn't he wait and see? Plus he said I have no physical symptoms! In the last 6 months I fell and hurt my ankle just from walking, had vision loss spanning 5 days which was sooo scary, but was relieved by steroid drops, tremoring and muscle twitches that I've never had before, palpitations, seizures, what the heck else do you want? Soooo frustrating!!! Anyway on top of all this I had a headache for the last 2 days-not severe pain but made me nauseated so that I couldn't even do what I do best sleep! But that led to vomiting for 8 hours, feeling better today but still nauseated, I almost always feel like I'm hung over, do any of you experience that? Thanks again for letting me vent!! And thank you Gretchen for that wonderful link! I'll quit ranting and raving here. Hope you all are having a good day today!!! Hugs, and thinking about all who are suffering, Brownie
Posted 1/24/2009 3:23 PM (GMT 0)

Hey Brownie,

Thanks for posting to let us know how you are.  I am so sorry you are so miserable.  Please remember this, when you can no longer care for yourself, it is time to go to the ER.  What is being done about the seizures?  I can't imagine those going untreated.  Obviously you are not driving........do you have a plan for getting to the hospital if and when you can't care for yourself?  Your description has you right there on the edge of needing to be hospitalized (in my opinion). 

Please rant and rave all you want.  That is why we are here.  I hope you get some answers and feel better real soon.

Posted 1/25/2009 2:06 AM (GMT 0)
Gretchen, thanks so much for your concern, the medical field is really disapointing me and what is sad is that I worked as a medical assistant and CNA for 15 years. The onset of severe nuero problems was that I went to sleep after work feeling great then woke up to numbness over whole body and nose to mouth in face, I knew I needed to go to the hospital. This continued and a friend took me I could barely walk as both legs were weak and I slept in the car on the way while having spasms of like the diaphragm area. I was curled up in the fetal position and my BP was high like 164/100 kept triggering the alarm. The doctor I saw said I had to many things going on so he gave me a cat scan which was normal-I've had a few all normal-called my GP who I'm getting rid of to see if he wanted nuero consult-then they gave me 2 ativan and sent me on my way with anxiety being the cause-give me a break! Also my nurse said to the patient beside me after she was thanked for her care- that she didn't mind taking care of people that were sick-I'm thinking this was addressed to me! So you can see my reluctance, and GP didn't even let me speak at last appointment he said I needed to go back to work and that I'm depressed- and I am not, then walked out saying I don't know why they are running all these tests they'll all be normal. First off he reffered me to these doctors and second off he wants to send me to Mayo clinic to see the same kind of doctors who will run the same types of tests-very frustrating! But I'm remaining positive and today is a good day I just ate something so appetite is back and no pain but I feel drunk now and frequently. ICP was a concern for me with the headache and vomiting but it wouldn't just go away would it? I'm hoping the nuero will do something for me but if that MRI is negative I don't know what I'm going to do! Also I'm only having night time seizures nothing while awake-except 2 years ago which the attributed to Tramadol. Okay enough about me I am sick of me really:) How do I find like people's story and background post wise? And also if I want to post on another board do I have to just type there or is there a way to transfer what I've written here? Don't know much about this stuff but I'm a big fan of this forum I've learned soooo much and I think you are all wonderful to be suffering and helping other turn Again hoping you are all having a healthy happy good day- oh yeah I definately wan to participate in the chat, what time is it pacific time and how do I do that like just go here??? Sorry I'm such a newbie tongue Hugs to all! Browni
Posted 1/25/2009 7:00 AM (GMT 0)

Hey Brownie,

I still don't understand about the seizures.  Why are the doctors not doing anything about those?  Who is witnessing those?  A seizure is very serious and can be life threatening. 

Ok soback to  the questions.  We chat on Mondays.  It is 4 pm pacific, 5 pm mountain, 6 pm standard and 7 pm eastern. 

You are welcome to post in any board on HW, but you are not supposed to put the same post all over the place.  Try to make your question specific to that board.  I am not sure why the rule about duplicate posts but I think it is to keep people from just using up a bunch of space.  Sometimes we get cyber-hypochondriacs and they use up a ton of server space for their attention seeking needs. 

We don't really have one place that lists everyone's story or background.  Just keep reading threads....lol.  If you want to know how people were diagnosed just ask.

Everyone has a very different story.  MS is so varied that it is usually misdiagnosed for years.  It all depends upon what part of the brain is being damaged by the demylenation.  For me, I developed vertigo..it continued to worsen until I was wall walking.  That that point my husband took me to the hospital.  I was admitted.  I was misdiagnosed with stroke.  I flared again 4 weeks later..........at that point they found multiple lesions.  They did the spinal tap, the evoked potentials, blood work, neuro exam by two neurologists and the rest is history. 

Have you had an MRI? or just the ct scan?  My ct scan showed nothing .........it was the MRI that indicated lesions. If you have an MRI that shows no lesions....then most doctors will not diagnose you with MS.  There is a very good chance it is something else. 

Good luck on your quest for answers. 

Posted 1/25/2009 6:35 PM (GMT 0)
Brownie,
Like Gretchen said, we meet on Mondays at 4 PM Pacific Time. Just come on here and on the 2nd toolbar, click on chat and then it will have you log in to whichever chat session you would like. Hope to see you here!
Posted 1/25/2009 7:01 PM (GMT 0)
Hi Guys, hope you are doing well today:) Will try best to make chat but computer trouble may be BIG computer trouble, hope not....the computer can't be sick too:)! Take Care!
Posted 1/25/2009 9:22 PM (GMT 0)
Hey Brownie

Hope u can make it!
Posted 1/27/2009 7:01 PM (GMT 0)
Brownie,
Not sure if you made the chat forum last night as I had to leave around 5:35 MST. We did have 7 of us all talking at once which sometimes gets interesting. I say my share also, sometimes just to aggravate some of the people which I then laugh at! They really are great, I must admit! I feel so welcome there when we talk. We have an "open Forum" where we can talk about anything (almost) except things that are sexual related. We try to keep it clean. Anyway, just wanted to say hi and tell you that maybe next Monday you can join our chat. Mondays are just about the only time I can chat with my special friend Rhonda, I love that young lady! Rhonda, you are awesome!

Take care,

Posted 1/28/2009 12:20 PM (GMT 0)
Chuck, fully planned to make the chat but I slept and slept that day-was mad at myself because that was the one thing I wanted to do! But will try to make it next week, hope to talk to ya there and hope all is well with you!
Posted 1/28/2009 7:33 PM (GMT 0)
Brownie,
That's ok. Sleep is much better than our chats because that's something we all need. See you next week I hope! Take care and have a good rest of the week!
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