A thought I had last night ...

[HollyHuney]

Hi folks,

I am feeling really down the past couple days. Last night and today being pretty bad. I saw a video on youtube and sat here watching it thinking to myself "If only I had someone to talk to, to tell me everything is going to be ok, to tell me why this is happening to me." I know that I have all of you to chat with and ask questions and express how I am feeling, but sometimes you just need a hug and to be told face to face that you're ok. Ya know? I haven't been diagnosed with MS yet, but after seeing this video, I am 100% positive that I have it. Everything this woman describes I have or had experienced.

Here is the link: http://www.youtube.com/watch?v=-BGBSsKBrbI&feature=channel_page

I tried talking to my mom, but she doesn't want to talk about there being a possibility of me having MS and just tells me that I'm fine. My husband, though loving and caring, always looks at things as they happen. So, because I haven't been diagnosed with MS, then I don't have it and there is no need for concern. I've tried to explain that It could take 10 years to diagnose this but he just doesn't understand.

Also, the only people in my family that have MS live about 7 hours away. So I can't just get in the car, to to Suzanne's house and chat with her about how she copes. (My second cousin has had MS since her young 20's) So, when my arms and hands go numb and I sit here shaking my hand violently trying to get the feeling back my husband looks at me and just asks, "So, when do you see the doc again?"

I sat here (and am now) crying like a mad woman because in my reality, in my life around me, I ma COMPLETELY alone. I thought about trying to find an MS support group around my hume, however, I have 5 young children. Do you know how hard it is to find a babysitter for 5 kids?!?! It is IMPOSSIBLE! So unless I can bring them with me, I have no support there. (My husband works 2 jobs and most of the time only have an hour or 2 hour in between jobs to come home and relax.

Sorry to vent guys, I know you have probably all gone through similar feelings, but I just needed to get this off my chest. I normally bottle up my emotions, but this is just getting too overwhelming!

Thanks again folks for your continued support.
Much love,
Holly

[HVAC]

Holly,
   I would have gotten back to you sooner but my computer got sick. My husband brought me a loner. My brother gave us a new TV and between that and this laptop I keep pushing the wrong buttons and messing things up.

Drs. are not evil thet just like easy fixes even shrinks. I got lucky because one who likes really difficult cases chose me. He is the husband of an artist friend and was awed by my resilience.

I think I am going to take Terry's advice and get some more counseling. The psychiatrist offered psychotherapy for next to nothing, but he is very busy and we have a University that has a sliding scale to let some grad students to get some clinical time.

I like Siberians but it is to hot for Dals here, Siberians are miserable.

Alex

[HollyHuney]

Hey Alex,
I know what you mean about the dogs, I have 2 Siberian Huskies. Both of them together make me play and be active with them. Apart they are just cuddle bugs though!

Wow, it's like you were a fly on the wall. You just basically described my first appointment with a neuro back in 2000. I had full right-sided numbness, from the top of my head to the bottom of my foot. Felt like I had a stroke or something. Thought it was my meds, but went to Neuro because PCP insisted. He got me an MRI, looked at it, said, "Nothing here. It's severe depression." and of course charged me out the arse for the 3 seconds I spent with him. So, I went to MS specialist in BOSTON. Cream of the crop, right ! Wrong! This doc wanted to do an LP on me, so I said ok. He gets me all prepped and sanitary and goes to do the tap. After 5 tries, he informs me that I have scoliosis (curvature of the spine) and he can't do the LP. I told him, no I don't have scoliosis. He insisted, I left pissed and hurting. Refuse to go back there again! Went to a new Neuro, bing bang boom. LP done. He has no clue why the MS doc said I had scoliosis. I told him it's cause he got his liscense out of a cracker jack box!

It is so pathetic how people who have chemical imbalances get labeled so easily as crazy. Oh well, Jane is on psychiatric meds. Yep, she's nuts. I don't know how many times, just in general conversation with people who don't know that I take meds, people make the assumption that anyone on meds for depression, chemical imbalance, etc. should basically just be locked away in a looney bin.

Makes me sick that people (Doctors included) are so close minded!

Great big Siberian Husky hugs
Holly

[saveone]

You have been given some good advice and there are so many responses you can see you are never alone.

I would suggest considering a counselor, social worker, clinical psychologist, or psychiatrist.

I have a licensed clinical psychologist and he is wonderful.  He is the one who I can tell anything without worrying will it stress him out or what will he think of me.  A good counselor cannot be replaced.  The need to have someone to tell anything and everything is one we all have.

terry

[HVAC]

Holly

Hey I am as pessimistic as they come. I smile and people think I am so happy.  I have the EEor Complex, the sad, grumpy donkey from Winnie the Poo.I have one dalmatian who is always happy and one who is snappy. I adopted the snappy one because I get him. We get along great and the other teaches us both how to be joyful.

I thought the MS symptoms were from being on psychiatric medications. Double vision must be the meds, dizziness must be the meds, walking like a drunk must be the meds. memory problems must be the meds.numbness must be the meds.

I have been dismissed as crazy by regular Doctors for  forty years. My psychiatrist said it was Neurologic when my PCP said numbness on one side of my body was depression.  I said how  can depression only effect one side of your body.I once tore three ligaments in my knee and a Dr. tried to say it was psychological. I said how come my foot now faces the wrong way! It is easy to be labeled. Even my PCP looked at me like I had two heads when she read my medical history and wanted me to find another Dr. She pictured a patient who would not take medication as prescribed, who would be super needy and irrational. Now she admits I am the most self reliant person she knows. She goes out of her way to talk to me when I come in to pick up samples.

When people say God does not give more than you can handle I want to punch them.


Life is progress not perfection.

A big dalmatian hug
Alex

[HollyHuney]

Thanks so much for the replies.

Scaredguy, I'm happy to hear I'm not alone in the "I feel all alone" yet I feel for you BECAUSE I know how you feel!

Sllowe, Thank you for the welcome to the community :) I have spoken to a doctor, I have a psychiatrist, I have been diagnosed with bi-polar and am on medication for it. As for steering myself away from think I don't have MS, I have tried, but just can't seem to do. I have been dealing with symptoms since 2000. It is now 2009 and I am no closer to a Dx than I was the first time I walked into the Neuro's office. I just went through more testing last week and, with hope and luck, something will show up. The "not knowing" is just eating away at my thoughts! To the point where it is starting to consume them (which I know I can't let happen) I'm the type of person that needs to plan EVERYTHING! And having unexpected symptoms popping out of no where is just too much for me. But thank you for the words of support. It is MUCH appreciated!

Alex, I'm actually relieved to read that you have bi-polar as well. I know that sounds nuts (no pun intended LOL) but, I always thought that maybe, just maybe, my mind was playing tricks on me. Making me think that these things were happening to my body, but really weren't. I waited and waited before going back to the Neuro with the fear that he would just tell me, "Eh, you're just nuts. There's nothing wrong with you!" after learning I had been diagnosed with bi-polar. It's a huge fear in me that I will be perceived as "crazy" because I have been labeled bi-polar. Have you ever felt that way? I know that I am super self-concious about how people see and perceive me as a person, which is why I don't make it readily known that I am bi-polar. Thank you for the advice on coping. I try to keep a positive outlook, but it is just getting soooooo hard to do. By nature I am very pesimistic, I have taught myself to be optomistic (no easy task! LOL) I will try to implement some of your advice into my daily routine.

Thanks again folk.
Holly

[HVAC]

I have felt that feeling of being so alone before and after my recent diagnosis. Before was worse because of all the unanswered questions and that was two years in my case. My husband would not believe it so I had to have the Doctor tell him. Guys are programmed to fix things when you tell them a problem. This is one they can't fix.

In my area I found out we have a large amount of new MS cases and less than a dozen MS Specialists even with two world famous medical colleges a few miles apart. At the Universities the wait is over a year. My Dr. is private and very good but because he is good has too many patients. There is no hand holding in my case though the practice prides itself on that. Now that I understand that I am happy with the waits of months not years and the care I get.

I am also Bipolar and fell through the cracks of the mental health system and I learned some coping mechanisms when I could not get counseling or medication for years at a time.

1.I have many friends to reach out to  on the phone because not everyone is available.
2.I distract myself when I go down the dark path. It is true you can't have two things in your head at once.
3. I break things down to small tasks. The big picture can be overwhelming.
4. I ignore my most crazy of thoughts. When I was off all meds for Bipolar for two years I learned not to act on negative thoughts.
5. I have to say my most negative thoughts to a trusted human being this takes away the power of the thoughts. A husband is not the best one because he is too close.
6. I have to realize my worst fears seldom come true.
8. I look at my pets who live in the moment and are happy and try to live in the moment.
9. I seek professional help when needed. I finally after over fifty in thirty years found a psychiatrist I like. We talk on the phone.
10. If I can I take a walk it helps with stress.
11. I realize if I do not take care of myself I will be a liability to my family.

Feel free to vent people care.
Alex

[sllowe]

Hi there,

Sorry I've not said hello yet.  Popping in to send you a belated welcome and some thoughts.

I'm so very sorry that you are so down.  It really is difficult to get through trying times when you feel this way.  

It really is best to speak to a Dr. about these thoughts and there is nothing wrong with doing that.  As for the woman with MS and similiar symptoms, it might be best to to steer yourself away from thinking you definitely have MS, because truth is, whether you do or not, you are just not at the point where you know yet.

Just saying, don't make yourself crazy over the possibilities.  Just deal the best you can, and reach out to the Dr. if those thoughts are way more than you can handle.  

Sit with your babies and just hug them and let them take all your time and thoughts and allow yourself to feel good...

Hang in there best you can!
Be well

[scaredguy309]

Hey, your situation sounds like mine. Am just 22 and in my first year of med school.now i think i will have to stop as after reading and looking at vids of ms sufferers, am also 100%, well 99.9% sure i have it. My parents and girlfriend all seem to think its in my head and am ok. Its frustrating and scary cuz am progressively getting weak. don't know what to do. Can't talk to my doc till the results come back and i've troubled her enough.