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Join Date: May 2024 · 10-02-2010, 08:56 PM

Thanks for your accurate honesty

I really appreciated your writing. You were so open and honest about your problems. Most people try to act like they don't have bad problems that are making them upset. I have been in your shoes before. Maybe I was lucky -- but in my case the bad days didn't last forever. Maybe there is a light at the end of the tunnel for you too. Perhaps these symptoms won't last forever and perhaps you will actually find a better emotional situation to live in. I am 64 and I could actually say my child-bearing and raising years combined with trying to get along with my now dead ex-husband were much worse than my old age. You never can tell in this world. I had a lot of symptoms like yours but there is not way to tell if they are from MS or what. Only until you get the MRI results or expereince such a bad ON attack or something will things come to a head and then you can progress towards different outcomes. I wish you luck. LIke I said, when I was young it seemed like the emotional suffering wuold never end. perhaps old age is something to look forward to afterall.

**KoKo** · 10-02-2010, 09:15 PM

Hello ARchickadee

Welcome to the Forums at MS World - thanks for stopping by to share your story with us.

Over the weekend I started researching my symptoms and shockingly found many similarities to a disease that I had only heard of once when 20 years ago I watched a news program about a lady, approximately the same age I am now, physically devastated by MS, who was fighting for her right for euthanasia. *

Not sure if you are aware of this, but MS affects each person differently. Many persons with MS are living normal/near normal lives.

I went right back to see my real GP who immediately ordered an MRI, telling me sadly, "You might have MS, and there is no treatment. *I'm so sorry."

I'm wondering, did your GP refer you to a neurologist or MS specialist?

I have been completely distraught, physically unable to care for my two precious little girls (ages 4 and 1) alone. *My dh has been out of the country most of the month due to work. *Much of my family has discounted my pleas for help, blaming depression and anxiety (I was perfectly happy and well-rested until August). *I have begged them to help my girls.

I'm sorry you are going through a very, very difficult time. It sure doesn't help when you don't have a supportive family.

I feel like my life is being pulled into an ever expanding sinkhole. *The "what-ifs" have started... *

I never had a symptom that would have shocked me into seeking medical help, but quite possibly I have had this for over 12 years. *What if I can never return to my teaching job? *What if i am at the beginning of the end? *What if I can never play my beloved tennis again, take care of my little babies, the house, the pets, myself, etc.?

It's understandable for you to feel distraught and go into the "what ifs". But many of us try to take each day as it comes, doing the best we can one day at a time. It takes a little time and practice, but it's worth it for our health and peace of mind - and for your childrens benefit.

My husband does not even wish to discuss my illness or any possibilities or plan for the near future at all. *He is irritated that I cannot do all of the things I used to do. *He accuses me of faking it and making excuses. *He has always been very obsessed about the house being organized. *

I recently tried to talk with him about how I would really like it if he would talk with me more, that I really needed him as a friend because I am going through a difficult time. *He flatly refused, saying he has too much to worry about, focusing on his job and taking care of the family financially, too busy to worry about me. *Then to top it off he then made a remark insinuating that I was "ill for sure but not physically". *

I'm sure your stressful relationship is not helping your health in any way. Hopefully you and your husband will come to some sort of resolution.

Good luck on Monday, and let us know what you find out. Feel free to ask questions and we'll help if we are able. Hope you find some relief and feel better, both physically and emotionally.

Take care,
KoKo

**Kallina** · 10-03-2010, 01:35 AM

MS ... maybe not the worst thing in the world....

There is always flesh eating bacteria

Hang in there .... & maybe get a good lawyer?

Well wishes.

**palmtree** · 10-03-2010, 06:21 AM

My heart goes out to you. I am 57 and newly diagnosed. I separated from my husband 16 years ago because he could never accept my frail health. If we'd known I had an identifiable disease, maybe he would have been more understanding, or maybe not. Since my diagnosis he has been so attentive. I hope your husband can see your value before you get fed up and leave. You sound like a fascinating intelligent woman.

This is a horribly depressing disease, I know. I was devastated when my first MRI came back with "demylination plaques". I watched my aunt suffer MS in its most devastating form when I grew up.

My biggest worry was my son. He's 24 now but I felt that getting a terrible disease like this was letting him down in the worst way.

I wanted so badly to connect with my long lost cousin, the son of my MS aunt. I wanted to know if he was disappointed in her or what? I asked him, "tell me about you and your mom".

I was so touched by his response that I cried and cried. He believes that, in spite on her paralysis, she was his refuge, the one who was protecting him. She is no longer here but his love and adoration for her carries on. This gave me so much comfort. I realized that this illness cannot break the bond between a mother and child.

I hope you can find a treatment that slows the progression. There is so much exciting research being done now. I'm planning to live to see the day when this thing is cured.

**golfwidow** · 10-03-2010, 11:32 AM

ARChickadee,
Sometimes the not knowing is worse than finally knowing !
I don't know where your doc went to medical school, but there is help for MS. The medication doesn't cure it, but it can keep things at bay and slow the progression. Betaseron, Rebif, Copaxane, Avonex, Tysabri, are the major medications.
Most of us at this site had years of knowing things weren't right with our bodies but no answers.....or they would go away before we got around to seeing the doc.
Start today by taking care of you. Get extra rest, eat a healthy diet, nap when your girls nap. I find that we know our bodies better than anyone..........don't give up on finding a reason.
And one more thing.......your attitude is important. Yes, things are frustrating right now, and your husband's attitude is not helping.............but you cannot control his attitude. You can only control yours. So everyday count the good things in your life, love your babies, treat your husband as if he was the best thing since sliced bread, ignore the negative and embrace the positive..............it won't change whatever the MRI shows, but it will change you !!! I know, I sound like PollyAnna, but truly, attitude can change lots of things..............and it is the only thing YOU can control !!!! Hugs and prayers for you........don't give up, MS is not always the awful thing you saw on TV !

**Bob698** · 10-03-2010, 04:02 PM

Finding out you probably have MS is a tough pill to swallow. No ifs, ands, or buts.
The one thing you have on your side is time.

I remember when I didn't know much about MS and was trying learn. Its tough but eventually you grow some callous mentally and learn to deal with it.
Basically, it took time but I learned MS itself wasn't terminal. It was just a terminal pain in the butt when things stopped working or when I'd promise to help someone and then have to bail out a day before.
Meanwhile, I learned to take each day like its the best its going to get and kept pushing myself with things like getting healthy (eating right) and sensible exercise (keep moving it or lose it). That sounds easy but its probably the toughest thing I had to tackle.
I also learned to adapt. If it helps, MS was not caused by anything YOU did, it just happened. Since you can't beat yourself up over it, get good at adapting to the things you can still do.

**ARchickadee** · 10-03-2010, 11:00 PM

First off, please allow me to apologize for the abundant asterisks. This post is agonizing to read because of them, but let me asure you that they were completely unintentional. Secondly, I sincerely wish to thank those who have replied to share their thoughts and experiences, showing me that I have been shortsighted in thinking that no one could possibly relate to my situation.

I do feel somewhat better despite the fact that today I have been rather agitated, preparing myself mentally for the procedure tomorrow, more so than from the anticipation of procedure itself the phone call that I will receive from the radiologist later in the evening. I realize that whatever I have tomorrow I will have had today, last week, last year, but that doesn't provide relief from the cruelty of a possibility becoming a reality.

What blight (if any) reveals itself, I beg for one thing:
please allow me to take care of my young children until they are able to take care of themselves. That is all I ask. Their father, who is fully capable of providing financial care for his children, is as equally emotionally distant and unattached, joyless, and unloving to his children as he is toward me. They will turn into Gollums (sp?) if I'm not around to teach them love, compassion, tenderness, and joy. Okay, that is an exaggeration.

Tonight my babies are sleeping in bed with me, each one is curled next to me with their feet all over me, making sure I won't sleep a wink, but I'm comforted that they need me. Surely, you figured out from my original post that my dh sleeps at the other end of the house (not MY choice). Lol. Can ya laugh at that or is that just too sad?

I appreciate your help, my new bad weather friends (bad weather are the best kind), through this because other than the therapist I visit weekly, I really have no other outlets. I'm worried to speak much to my friends for fear of becoming a liability to them, that they will ditch me because they think I'm going to start needing help, just like my own family has been running for the hills.

Okay, okay, more drama for free later. I'll post with an update tomorrow. Hope everyone else is at peace tonight and feeling okay. Take care, Me

**todays child** · 10-04-2010, 05:37 AM

Hi Chickadee,

I have to tell you, I've been replying to you over and over again in my head for the past two days. There is so much I want to say and there's so many ways I want to say it - mostly I want to just hug you.

I grew up in Memphis and I'm going to take a wild stab at a guess here and say that West Tennessee isn't much different than Arkansas. Southern men can be a different type of beast. It sounds like your husband is much like my father. I grew up watching my mom constantly being measured against my grandmother but while I was young I was a daddy's girl. As I got older, I knew that wasn't how I wanted to live. I do miss parts of it. I miss the idea that there's someone in charge ultimately of protection and providing.

I also understand what you mean about the other mothers at the playground. They're on a different plane of existence, really.

That said.... you have a father that will give you the straight of it once you have your tests done tomorrow. Also, if it helps at all, I'm reading a technical journal on MS for radiologists the neighbor lady loaned me (doesn't everyone have a neuroradiologist for a neighbor?) which is certainly over my head, however it's full of information and statistics and has given me great hope. I can't quote them right now without the reference (my husband has the book) I'll try to get back to that.

My point is, this is scary and the field is wide, however there are many people that apparently managing it and live a full life.

Warm hugs to you,

**zippity** · 10-04-2010, 09:36 AM

I am not a doctor and this is just my opinion but to me you sound very much like you have depression and until that is fixed you will have a very hard time handling anything else. Being an emotionally wiped out mommy is worse than stopping the breast feeding a little earlier than you planned. Your dh sounds vacant and he thinks you are being lazy?! omg you have two babies! and there his! If his mother is so perfect she should be straightening him out!
Give me her number I'll call her!

We will always have your back! Hang in there.

**Camsue** · 10-04-2010, 09:14 PM

gosh you're in a tough spot and it's all up to you to change the scenery. I know that taking care of my 7 yr old Grandson 5 days a week keeps me going, but yes I do lack the energy and get snippy.

You need to use some 'positive reinforcement" on 'dear hubby' ..you're going to have to reinforce him when he does something you like and ignore the bad stuff..it will make you feel better and the air in your home will be so much nicer.

Unfortunately (and fortunately) we as women call the shots. Your husband will respond differently if you act (fake it if you have to) differently..if you do that for a couple of days it becomes more 'natural'.

I am sorry you have to be here, but we're all in 'this boat'. You're still a young woman, your oldest daughter will be in school next year, it will get easier.
take care chickadee and try this

**ARchickadee** · 10-05-2010, 08:51 PM

Update

This is the fourth time I have attempted to post an update. Things just kept happening!

I really appreciate your continuing support, which has made getting through the past few days easier. I spoke with my father and his partner regarding my MRI images. Their impressions were that my brain appears normal: no visible evidence of tumors or lesions. However, they noticed significant degenerative disc disease in the cervical spine, more so than one would expect in a person my age (37) without a history of injury. I will have the rest of my spine done next week and a visit with my GP this Friday morning.

I do not know what to feel. I am relieved that I do not have a brain tumor, but I realize that normal images do not rule out MS. What is the next stop on this autoimmune bus tour? Let me off at, hmmmm, how about, on Grave's Disease Avenue. Too bad we don't get to pick 'em, eh?

You are right that I am having trouble with depression. Since I have not been breastfeeding after the contrast medium injection yesterday I feel that my baby is ready to be weaned so I can start my Cymbalta. She is adjusting okay to formula. My dh isn't the easiest to modify. I try! He is very strange, almost inhuman and doesn't respond to things to which other people respond, like affection or kindness or spending time together. He had a difficult childhood in a war-torn country, living in a refuge camp and such before immigrating.

Anyway, it is hard to think about much else as I am in a lot of pain today, burning muscles and back pain, but I have a few technical questions that I'll post in the general forum instead of my drama forum.

Hugs to all who hugged me first, oh, and everyone else, too! I'll update more as my story unfolds. Take care, my friends.

**MyGirlsMom** · 10-31-2010, 08:09 PM

Hello! Your story and struggle really hit me when I read your posts a month or so ago. Please update us on how you are....we care!!

**ARchickadee** · 11-05-2010, 02:47 PM

Update

Thanks, mygirlsmom, for reminding me to update! I really appreciate your concern.

Let's see...thoracic and lumbar MRI was normal except for a mild disc degeneration in the lumbar spine.

I had my first neurology appointment on the 2nd. That was a quick and dirty visit, meaning he cut me off after describing a few symptoms to give me a brief exam, before scheduling a VNG and EMG. He smiled way too much. I felt like his demeanor was less like a doctor trying to diagnosis a neurological problem and more like a car salesman.

My VNG was yesterday. It wasn't too bad, but due to my extreme anxiety over everything I did shed a few tears during the caloric testing. I was nauseous the rest of the day.

Today was supposed to be my EMG testing, but after the first low voltage test on my calf I cried out in pain. I told him I couldn't do it! He said that was the lowest current. He said he can't determine if it is a pinched nerve without the test. I was in tears (not bawling but watery eyes). I just couldn't do it. He said I was the first person that reacted this way in all of his years of testing, that even children can do this test.

Now, I feel depressed that I couldn't do a test that could help find out what is wrong with me, a test that "even children can do"! I have a follow-up appointment with him next week to discuss the VNG and MRI, the problems in the cervical spine I presume.

Physically, I am feeling somewhat better. Most of the pain has diminished, and the fasciculations and jerks have subsided considerably. My balance is still off, feeling wobbly and dizzy when I walk. Sometimes during the day it is almost gone, and it is worse during other times, yet not following any pattern that I can determine except that it is often worse when making lots of movements, for example, cooking meals for the girls. I have been dizzy every day for over three months. It is getting old!!!

My husband has totally tuned me out. He doesn't even ask how my appts are going or how I'm feeling or anything for that matter. Maybe my illness is too much for him to handle. I keep everything to myself. My father has been babysitting during my appts though. What a sweetie!

DH is out of the country most of the month. It will be a tough month alone. Not that he helps much, but I get enough to keep me from sticking chopsticks in my eyes! Lol.

Funny thing....my 3 year old came up to me today, pushing her baby doll in a stroller. Our dialogue:

"Mom, my baby is sick."

"Oh, I'm so sorry. You are a good mommy who will take good care of her."

"No, you need to take care of her. I'm the daddy."

Soooo funny!!!!

Thanks guys. I'm having a crummy day.

**fina66** · 11-05-2010, 09:32 PM

I am new on the forum first time tonight

I don't know why I waited so long to find the friends I have been looking for. I so understand what you are going through. I said a family member was inhumane because there is no thought or feeling or concern instead he said I was filling his wife's head with so much garbage and called me crazy. I thought she was my best friend and wanted to know how I was feeling from one minute to the next. little did I know I was bringing her down. I was too depressing for her I suppose. I am sorry about that. they won't speak to me because I said a humanatarian he is not.
I am thankful to have found people who really do get me. your story is like I am writing it. your feelings are going through me as well. My husband is wonderful and so caring and loving when he is home when he isn't working round the clock. sometimes he forgets to call or text then I wonder does he care when he isn't at home? to go on 12 hours or so without hearing from me does he wonder if I am ok?

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