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Postby Suchislife » Tue Apr 26, 2011 1:35 pm

Hello everyone,

I'd like to take the time to introduce myself. I was very excited to find this forum today.

After 2 years of being diagnosed with MS, I have yet to find a group of people that I can talk with who might even, remotely, understand the things I go through on a daily basis.

While I have been diagnosed for 2 years, the duration of my MS has probably been more like 10-15 years, but there really is no telling. Many of my symptoms prior to the optic neuritis of two years ago were psychiatric in nature.

I'm 33 years old now, female, just divorced, and when my ex found out I had MS, he and his lawyer threatened to use my new diagnosis against me to take my 3 children away from me. I ended up in the hospital, and he was able to get custody that way, instead. And I guess, on some levels, it is good that they haven't had to see me go through some of the tougher days I've had. Although, I know my kids would understand.

To say the least, I have been in need of support. And I am very happy to be here. Thanks for the lovely group.

Take Care!
"If a man does not keep pace with his companions, perhaps it is because he marches to the beat of a different drummer. Let every man keep step to the music that he hears, however measured or far away." - Henry David Thoreau ~Audrey
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Postby lyndacarol » Tue Apr 26, 2011 6:25 pm

Welcome Suchislife (Audrey); we are glad you found us. I think Audrey is such a pretty name – I had a friend in college with that name.

We may not all have the very same symptoms, but we usually share a few; in general, we are sympathetic – we understand.

We welcome your questions; please share with us your thoughts and emotions (as we do with others here); join our search.

I think that most of us are optimistic. There are no answers for MS at the present time; there is no effective treatment, in my opinion. Personally, I think that diet has the best chance of helping our condition. Perhaps I am a Pollyanna, but I think this puzzle must be solved soon.

Welcome, Audrey.
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Postby jml945 » Wed Apr 27, 2011 7:50 am

He took your kids away from you because you are sick? What a vile human being!!
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Postby HunnyBunny » Wed Apr 27, 2011 9:42 am

I'm so sorry that you have to go thru MS, a divorce, and lost custody of your children. Thought I'm still being diagnosed, my daily living is tough. I have 3 very active boys, but they are being as helpful as possible. I've seen 3 of my good friends go thru very messy divorces. But all this together? I cannot imagine the stress you must me going thru. I wish you all the very best, and I hope you get the positive support you need from this forum.

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it IS exciting!!!!

Postby heavymetalknitter » Wed Apr 27, 2011 7:56 pm

Hi, I'm new also and I found this site accidentally....Its very comforting and ppl here are very well informed.....
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Postby Suchislife » Mon May 02, 2011 8:00 am

Thank you all so much for your warm welcome and greetings of optimism.

I would strongly agree that an optimistic perscpective is vital towards the achievement of any healthy lifestyle -- with or without MS -- with or without the stressors of divorce, custody issues, etc...

Being strong and positive in the face of adversity is not only difficult, but it is a conscious decision made by one to overcome obstacles and refuse the path of least resistance. It IS NOT EASY. However, "the flower that blooms in the face of adversity is the most rare and beautiful of all!!!!!" ~ from the movie "Mulan"

Thank you again.
See you all soon!
"If a man does not keep pace with his companions, perhaps it is because he marches to the beat of a different drummer. Let every man keep step to the music that he hears, however measured or far away." - Henry David Thoreau ~Audrey
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Postby jml945 » Mon May 02, 2011 8:46 am

When you say a lot of the symptoms you have had were psychiatric in nature, what do you mean by that? I've had my own psych symptoms and I was curious if they are at all similar to what you have experienced.
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Postby Suchislife » Mon May 02, 2011 9:35 am

Before I was diagnosed with MS, I went through the hoops of the psychiatric community. In my teenage years, it was all chalked up to depression, but in my early twenties, a definite diagnosis of Bi-polar was given.
Looking back AFTER the diagnosis with MS, I can clearly see a correlation between the times when I was experiencing hightened symptoms with my bi-polar (i.e. sleeplessness, irritation, mania, depression, anxiety) and see that those were moments when stress was increased, other MS induced flare-up activity was present (heat, over-exertion, poor diet, etc...), and even though there is question as to "which came first," I would say that these two disorders are working hand in hand -- and have been for quite some time....
Thanks for asking!
"If a man does not keep pace with his companions, perhaps it is because he marches to the beat of a different drummer. Let every man keep step to the music that he hears, however measured or far away." - Henry David Thoreau ~Audrey
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Postby jimmylegs » Mon May 02, 2011 10:57 am

my old roommate has a bipolar dx but it's suspected to be from overmedicating with anti-depressants.

she did pretty well while she lived here, since i was on top of her taking fish oil, b-complex, d3, magnesium, zinc, etc.

that year she did not have her cyclic anticipated hospitalization.

so i don't know your personal experience but from living with it i can tell it's not a fun time to have to do so!

sorry to hear about all this ... life.. on your plate :( welcome to the forum though we're here for ya.
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Postby jml945 » Mon May 02, 2011 12:23 pm

About 2 years ago I had a really rough period of about 3 months where I had daily panic attacks and was diagnosed with generalized anxiety disorder and a panic disorder. I was medicated with 40 mg of lexapro per day and it seemed to work slowly over time. Now I don't deal with anxiety nearly on the level I did then, but I'm pretty sure it was all related to underlying neurological damage. Seems like I'm not the only one to go through this sort of thing.
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Postby jimmylegs » Mon May 02, 2011 1:25 pm

know something weird - i gave someone some advice re fertility and later she asked me if it was something i had recommended that would help anxiety. i told her it was probably the magnesium. i had not realized she was so stressed. she thinks (probably right) that the stress reduction from magnesium was just as important as the zinc for fertility. off track but anyway..
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Postby katyb76 » Mon May 02, 2011 3:39 pm

Nice to meet you! I was happy to stumble across this as well. I am 34 years old, divorced and now unable to work outside my home. My kids have seen me at my worst (wheelchair bound after rt rotator cuff surgery, so only able to use my left hand) and they have been great. You are right that your kids would understand, and it sucks their father doesn't want to be a decent human being. My ex has threatened to use MS to take our kids, but shuts up when I point out that he doesn't even know their doctor's name! Sorry to vent to you, but as horrible as it sounds it is a bit refreshing to find someone my age with similiar struggles. Stay strong and never give up on your kids, when they are old enough to understand they will! :) Take care and feel free to vent to me if you need to!
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Postby Suchislife » Wed May 04, 2011 3:11 am

Hi JIMMY> I, too, am INCREDIBLY intolerant of anti-depressants -- so much so, that I become depressed and suicidal afer a few weeks of feeling really great starting any anti-depressant regimen!! (The same goes for birth-control -- hormones -- for me.) When someone has a dx of Bi-polar, it isn't always in their best interest to assume that anti-depressants are going to work! I stumbled across Topomax when I was being treated for Migraines...and POOF!...my mood swings began to level out, as well. That was pretty interesting. I'm very glad I found a doctor who understood that each person responds differently to different medications and is unique!

I guess I have a very sensitive body -- it doesn't like new things. Even supplements can cause adverse reactions for me, so I have to be extremely careful. And lately, my list of "allergies" has gone from NKA to at least 10 (I have to carry the list with me now...LOL)...I keep adding to it!!! This is weird for me, but I am dealing with it. Also, I am having difficulties with anesthesia lately, as well; it has become more and more difficult to "get numb" for prcedures and "go under" for surgeries. So long as the doctors are aware of this, things have gone OK -- they make the necessary adjustments. I have only had one doctor who didn't believe me (a dentist); he said, "you HAVE to be numb by now," and started drilling! OW! If I had my wits about me, I would sue him for a violation of my human rights!

Hi JML> I also have had my fair share of anxiety issues. And along with my "mood stabilizer," I also take a daily anxiety medication (and I have been taking the anxiety medication for much longer even). Without it though, I had BPs that were outrageous, I was completely unable to socialize, work (when I was capable of work at that time), or many other daily functions. Again, it has probably been the result of neurological issues from the MS, but either way, treating the symptoms of the anxiety through various methods is, bottom line, what has ultimately worked for me (through meds, lifestyle changes, relaxation exercises, etc...). Managing the anxiety reduces my OVERALL stress which helps control possible MS flare-up activity. Remember...stay COOL -- 8) !

HI KATY> It's nice to meet you, too! :) Don't be sorry one second of your life for "venting" to me; you completly made things "OK" for me in ALL that I am going through by telling me a bit about yourself. Thank you very much for that!

You said it is refreshing to find someone your age with similar struggles -- VICE VERSA!!!!!!!!!!!!!!!!!!!!!!!!!!!!

It has been 261 days since I have seen my children, but I don't give up. I will ALWAYS have my love for them and hold tremendous hope! My daughter contacts me on Facebook when she can. My boys call me when their dad falls asleep. I have learned to not wake up in the mornings "waiting" for these things to happen because it really isn't all that often, and I end up worrying myself sick. But, I do completely engulf myself in the joy of each second I have when I do hear from them.

They really wanted to actually be with their father at the beginning of our separation -- I was the dispilinarian, you see. And he was the "path of least resistance" -- the one with which they could get away with things! I warned them and told them they needed the structure I was providing, and absolutely DIDN'T need aggression, ridicule, or lack of emotional, spiritual, educational and other support -- they needed a love without conditions. However, he won this little "battle," (I wasn't there physically for a few days) and because of that, I have been labelled "unfit" until I can prove otherwise, and yet I don't give up -- my children are EVERYTHING TO ME -- and I have a gut feeling that they might be beginning to see what I was talking about, or at least desire a little bit of contact with their mother.

I am sorry to hear of what you have been through, but I am thrilled at how your children stayed beside you -- when I went through my bought of Optic Neuritis, mine were right there with me, also, and were very helpful; they helped more around the house and were perfect about getting ready for school and they ceased the sibling rivalry for a few days -- LOL (the difference with the Optic Neuritis was there was no overnight hospital stays and, thus, social services did not have to intervene when I was unable to care for them for a few days).


Thank you all for sharing -- it really does help to hear there are like-minded individuals maneuvering along life's path. MUCH APPRECIATION!
"If a man does not keep pace with his companions, perhaps it is because he marches to the beat of a different drummer. Let every man keep step to the music that he hears, however measured or far away." - Henry David Thoreau ~Audrey
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Postby katyb76 » Wed May 04, 2011 6:20 pm

Thank you so much for being here, you have been more helpful than you could imagine!
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Postby shucks » Sat May 07, 2011 8:21 am

I am a complete newbie, and read the newbie sticky, and don't want to do anything wrong, but this is the first ms group I've joined.
I had ON in 2004, and an neuro-optimoligist told me it was a ad case, but it should resolve its self without treatment. I was a first year law student and didnt have insurance, so nothing was cool with me. Fast forward to a couple months before my 30th birthday, december 2010 I get up to go duck hunting one morning and though it's cold, my left foot never thaws out. With in a week or two, it was in my right foot, and has now climbed my trunk to my mid chest. I notice lherrmitte's too. As an avid outdoorsman, my dr. tells me at that time that it has to be spinal, but to rule out ms I need to have an MRI of my brain. It comes back clear. He decides to get the entire spine a couple months later, and that one comes back as a single lesion "characteristic of MS".
My doc sends me to a spinal specialist, who sends me to a neuro that he deals with a lot. This has been a six month process and now my fingers are numb too. This neuro tells me that it is ms, but only in my spine. He sees what he believes to be 3 or 4 other lesions throughout my spine, and none on my brain. My ON eye still bothers me for a week or so a year, but I still seem to have all of my strength on the numb limbs. My NMO test has been out for 2 weeks and i'm scared to death.
Are there any studies in relation to NMO and ms and treatment? If what I have is MS, that has progressed steadily over 6months, is now the time to get treated and tested for ccsvi if it's going to happen, or do I need to start a DMT?
I know this is long, but I'm in the middle of freaking out and I am not confident in any local neuros, and am scheduled to leave my home in Mytle Beach to go to Duke for a second opinion at the end of the month.
Any advice as to where i go from here would be great. I have spent 6months lurking and being upset, which is really not me. I'm a 6'6" 300lb "Manly Man", attorney, and I have spent the last 6 months freaking out and half crying myself to sleep like a middle school girl.

Any advice would be welcome.

Thanks guys.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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