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Old 08-30-2008, 12:40 PM #1
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Default Something is wrong but dont belong anywhere..

OK I am going to preface this with I am in a "mood" and just feeling kinda sad and lonely. I came HERE cuz I think some of you may remember who I am.

I am usually the one who support and encourages even tho I do not have ANY concrete DX of MS or any other neuro disorder. I stay here to offer that support.

Yet for me, something IS wrong and I cannot ignore it.

I just started a new job doing, get this HOPSICE work as a social worker and I love it. BUT yet I recognize that a new job is a stressor.. to learn all over again, make mistakes and struggle in that process.
OK I am aware of that.

I am also still grieving over the sudden unexpected death of my DH a year ago. i have periods when I am really ok then angry then .. well.. not ok. I do believe with all the struggles of loving a man who suffered brain trauma 3 months after falling in love I am happy that NOW"our relationship" on a spiritual level is present and I am happy with that. He does speak to me.. I feel his presence and guidance.

But since my new insuranc does not start until Sept 1st I have been having some neuro type problems. Of course !! I am having Seconds of spacing out with dizziness.. BP out of whack again.. Its as if I can feel lesions popping in my brain. Sounds whacko but true.

I have to start ALL over again with picking MDs..and I swore off MDs all off this year!!!

My MS neuro ruled everything out that he could and declared in 2005 I had MS tho benign/mild case. OK.. then walks away. Never offers tx yet would treat any symptoms with Steriods if really bad. Then his
PA said NO, no MS but something neurological is going on and its serious. Ask the Neuro if indeed I had autonomic dysfunction, he calls back NO, I did not have an autonomic dysfuntion (the sudden attacks of BP/HR and unresponsiveness)/ The last time I saw him this year, he said NO MS tho he was monitoring me for 4 months every year as it was not sure. So now he said I do have autonomic dysfunction (huh?) and should see a cariologist who would only put me on a beta blocker I am already on for it. I have no heart disease but my BP is hard to control at times.

I get bladder pain as if a UTI is starting but no infection..just pain and it goes away.

See? AGain I am swearing off docs but cannot risk something really serious to happen with just starting a new job and on probation. I am tired of all this.

I guess I just need a comforting word... a connection ok guys?

You were all so supportive when my DH passed.. so I am coming back for a emotional "tune up"...

Jan
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Old 08-30-2008, 01:26 PM #2
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Jan, sorry for the troubles you are going through. I can understand you swearing off docs,

I have a feeling you know what must be done. Sept 1st is almost here, I think its time to make sure you are ok,

I am pretty sure Your Beloved would want you to take care of yourself and not ignore things, because of what happened. I hope you are able to get in to get some assurance from the docs,:hugs:

No matter your choice, :hugs: and prayers that you feel better real soon
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Old 08-30-2008, 01:50 PM #3
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Jan

Sept 1st is just around the corner. Maybe you could find out from the Hospice people that you work for the name of a good Internist and get a complete physical. That's a good place to start, with a clean slate.

Take it one step at a time. You know your own body better than anyone. Listen to it and keep track of what's going on. It may or may not be MS, it could be something completely different.

Short story - a good friend of mine was dx'd with MS a year before me. The more I learned about MS the more I was convinced she didn't have MS. After about 2 years, her DH, a couple of her very close friends along with me convinced her to go see an endocrinologist. Her thyroid was completely non-functional. She had surgery and guess what? No MS. She had been shooting up Betaseron for no reason whatsoever.

Jan, do whatever you need to do to get the medical help you need for your own well being. Take it one day at a time.

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Old 08-30-2008, 01:51 PM #4
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Thanks Weegot5kids.. isnt your name Frank? What a coincidence as so was my DH. AND he was the BIGGEST BEATLE fan.. so ironic.. but I will pay attention. Its picking the "right" doctor as I do not want to fool around going from place to place. AND I only have a few hours on Thursday and Fridays to make appts around my work schedule.

Thanks for being the FIRST... I appreciate it lots

Jan
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Old 08-30-2008, 02:04 PM #5
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Thanks Av8rgirl... endrochronologist hmm.. I see my nutritionist this week and he has an amazing eval he does throught a computer.

But I forgot to mention that another neuro in the MS neuro's office thinks I "may" have narcolepsy. He was in the middle of dx that but needed yet another sleep study in a few months. I have sleep apnea but now have DAYTIME apnea.

thanks..

Jan
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Old 08-30-2008, 02:05 PM #6
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One more thing.. I DO Have lesions periventricular area, temporal lobe, frontal lobe I think with a new one on the PONS which I believe is part of the brainstem. I just feel as if more lesions are forming whatever they are caused by..

Jan
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Old 08-30-2008, 03:48 PM #7
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Hi, Jan!

I'm glad to know that you feel comfortable to come around and soak up some support. We don't care whether you have a dx like ours, you're one of us now (my condolences) and like I've said before, you will always be one of us (please, no theatrics).

I agree with Frank & FG, you know that something isn't right and it's your body. Don't give up, the right doc is out there somewhere and he/she is equipped and willing to help you. Find that doc so you can get on with your life!

And, do me a favor, get yourself a good massage just for the sake of you.
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Old 08-30-2008, 04:57 PM #8
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Hey Jan! Of course we remember you and all you've been through. I have to echo what the other's said about seeking a good Dr and finding out what is truly going on w/you. Not knowing can be so stressful.

Good luck w/the new job and make time for YOU. From one who knows the true meaning of Stress, it's really important to do things to make you feel better, aka AMN's massage suggestion.

Keep us posted on how your'e doing, Jan~~ we care about you.
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Old 08-30-2008, 05:07 PM #9
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hey Jan,
I remember you...another limbo girl....here I am too....hugsss to you...

Hey I am seeing an endrocrinologist...sp??? soon, in October...although my thyroid test was good...my dr just said lets see about hormone related stuff..and who knows, another type of dr might just figure out a new way to go...hoping so....

hugsss to you Jan, take it easy, take care, and stay and visit more..hugss,sarah
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Old 08-30-2008, 05:23 PM #10
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Hugs and warm thanks to you guys for being there for me. Picking a good doc and f/u specialists will be guided by the spiritual side I hope.

I am bit reluctant to find a massage therapist since I had a very serious reaction with a series of massage treatments. Oh it felt good to get the massage...what I didn't know is that as she was pushing on scar tissue to break down the adhesians..it flooded my system and when I got off the table I could not walk!! I could not remember how to get dressed.. I was totally messed up and spacing out. I finally made it out of there and with hanging on, I even drove home and cried to my DH that something is terribly wrong.

I kept falling that day and the last fall I hit my nose and gave myself a concussion!! Since all this I found a great massage therapist up North but not in town.

But..I'll keep pluggin away.

Warmly Jan
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