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Old 10-12-2011, 11:37 AM   #1
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Unhappy Confused as ever!!!

Hello everyone well I had my first appointment with the MS specialist today, and I am even more confused and frustrated than I was before. I liked her alot and she did spend a great deal of time with me and listened to what I had to say. The neuro exam did not go that great, especially the cognitive part of it. She is sending me for a 3T MRI and a neuropsychological test to see how bad the cognitive impairment is and what type of therapy we might need to do. But then she said that she really is not sure what this is, the symptoms are those of MS but from looking at my old MRI from back in march it looked to good to be MS. I'm at a loss, any input?

 
Old 10-12-2011, 11:57 AM   #2
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Re: Confused as ever!!!

Hi, count today as Step 1. Your neuro does not appear to be placing much trust in your previous tests. You have a cognitive problem which is manifesting and has caught her attention. Get the 3T MRI and relax. Even a thousand mile journey goes no where without the first step.

It would appear you are in capable hands. You can consider yourself blessed.
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Old 10-13-2011, 06:14 AM   #3
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Re: Confused as ever!!!

Thanks MsJayhawk I know you are right. I knew I was not going to get a definate answer yesterday I guess I was just hoping for some insight, not for her to trell me that she doesn't know what it is. I have been having alot of trouble with the "brain fog" this time but I don't think I realized until yesterday to what degree it had been affecting me. In my work, I need to be able to think on my feet and I am not able to do that now. She talked to me a little bit yesterday about her concern for me being able to do my job or driving. I am truly devastated. I am 33 years old and I am fortunate to be one of those people who love their job. I have always wanted to do t6he work I do since w I was 16. I do realize that i am having problems at work, in fact I turned down a promotion earlier this week because of these problems, but I have been finding ways to make it work and the girls I wotk with are very supportive and help me when I need it. I never thought I might have to give up my job, at least not now. As far as the driving my family and I live far from town and everyone and if I am unable to drive i will feel very secluded. I am trying to stay positive and put it in gods hands. I realize that whatever will be will be and dwelling on it will not change anything and that i dont need the added stress, but i must admit i am having a hard time right now. Sorry for dumping all this on you but no one in my family understands that I feel like I am losing my mind, and my body is playing war with me and I am losing!

Last edited by mod85; 10-13-2011 at 03:51 PM.

 
Old 10-13-2011, 08:16 AM   #4
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Re: Confused as ever!!!

Brain fog can be a concern. But you can battle it by reading and exercising your mind. As to the driving problem, I gave myself 6 months off in 2002 after getting lost commuting home. You might consider a GPS voice navigation. Though annoying, it might prove useful.

You might need to alter your career path. A managerial path might help you. You might also consider a teaching position.

Stay strong. You can get through this.
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Last edited by mod85; 10-13-2011 at 03:56 PM.

 
Old 10-13-2011, 09:47 AM   #5
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Re: Confused as ever!!!

I had thought about going back to school in order to teach but the problem with that is, right now at least the cognition is so bad that I ahve a difficult time with memory and attention span. Not so much with things that I already know but with new things, like the new computer system we just had installed at work. I had to write down each process step by step and have to refer to the notes each time I do them, i cant seem to retain them. I do read daily as that has always been a love of mine but as soon as i have finished reading something its gone i can comprehend it i just cant retain it. It is very frustrating. Oh well, I will find a way to adapt and overcome, I always do!
Thanks so much for your words of encouragement, they mean so much!

 
Old 10-13-2011, 10:02 AM   #6
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Re: Confused as ever!!!

My mom's control station went electronic about 10 years before her retirement. She would spend 2 hours after work each day to learn the system. Even when she learned it, she still kept the step-by-step instructions next to her just in case. There is nothing wrong with that. In fact when I was serving in the military, we always had step-by-step instructions open to refer to in order to assure our work was mistake free.

My sister's Master's program uses a structure of one class at a time with an 18 month completion. If work or schedule causes a conflict, the same class is repeated again in 6-8 weeks. That keeps you on track. You might look into this and then you know you have a safety net beneath you.

You can do anything you set your mind to achieving.
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Last edited by mod85; 10-13-2011 at 03:56 PM.

 
Old 10-13-2011, 01:38 PM   #7
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Smile Re: Confused as ever!!!

I was diagnosed in 1987 and my job was immediately taken from me. I was told it was too dangerous for me to do the job anymore but what it really boiled down to was Kaiser didn't want to pay for my health insurance. I took a leave from that job for a year. By this time I was doing mostly phone advice for a real busy clinic and using a w/c. It was hard and I did it for 2 yrs until I had a really bad relapse that resulted in 5 months of rehab before I could be on my own again. I only worked one yr after finishing my degree mainly because of fatigue. I could have gone into teaching but it was & still is difficult for me to get my thoughts out some times. I felt I would get too frustrated and not be able to communicate as effectively as I would want for my students. After giving up that job, I became more artistic-taking art classes and making jewelry and I now do that with my husband. I also took the time to physically rehab myself to get out of a chair. I worked long and hard with a trainer specializing in neuro diseases and I can now walk better and we do hiking and rock hounding! That helped me emotionally so much as I was getting really isolated. We too live 12 miles out of a small town and I write everything down as far as errands, and directions. My dilemma now is I have just had part of my thyroid removed and my thryoid is out of whack on top of my MS. I am on Copaxone and reaching the 5 yr mark of it and running out of tissue to give the shots in. I have to say it took several neurologists to finally diagnose me-my MRI got so bad after a bad fall that they really started getting serious and repeated many tests that gave me the definative diagnosis. I am lucky to have a very supportive husband who can handle my down periods (not depressed, just super fatigue/no energy for extra stuff), and knows when to make me stop pushing myself. He's also aware of my cognitive problems and does most of our driving and helps with shopping. We figure we are a team! Don't be too hard on yourself-I was 37 when diagnosed but worked for another 13 yrs!! Good luck!

Last edited by mod85; 10-13-2011 at 04:00 PM.

 
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Old 10-13-2011, 03:34 PM   #8
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Re: Confused as ever!!!

Family Blessings-
I just wanted to put my two cents in for support. I do have a diagnosis, and at the time I got it, I was 33 years old and in college for my undergrad. I also have a high stress job. 60% of my job is marketing, the other 40% is pitching in, hands on- in other areas.
Immediately after my dx, I was devastated. I was working in Pharma sales, also as a manager, and was a road warrior. I basically crashed and burned out quickly hearing the news. My cognitive skills became blurry, I was scared and I was frustrated. I had also just gotten married and had 3 children move in with me, all under ten years of age.
After 5 months, I quit my job.....and after 2 months at home, took a lesser position in marketing, at a desk. I then realized, I honestly didnt want to be tied to a desk. I returned to school after a year, got my MBA and then my MSN- and joined the company I am with now. I have worked my way up to management.
I am also doing my doctorate at this time in Health Sciences. Is it hard? YES! I work 55 hours a week and I go to school almost another 40. Some of my classes are online, which helps, but those are actually much harder than being in school. I do one class at a time, and each one is 6 weeks long, with a weekend off in between before the next one starts. I havent had a break in 3.5 years. I stop going to classes in April of 2012 and start my dissertation. Thats a three year plan. (By the way my disseratation is challenging Big Pharma and the fact that they basically own the healthcare system).

I have never been anything but a 4.0 student. Cognitive issues, having to use voice recognition to type, all of it, and Im still a 4.0 student. I was valedictorian of my undergrad and Masters class. Im very proud of that...but my point is that since returning to school, I have tripled my cognitive abilities. I have much better retention, more ability to put my thoughts out there, clearly. I lose words much less often. I impress myself more than I impress others, because I never thought I could do what I have done. Mostly, it gives me self confidence. You really should think about returning to school. I am implementing. You really shouldnt be thinking negatively about the 'what ifs" but instead focus on day by day. You can do this. I did it, Im still doing it...you have to be strong and focused and force yourself sometimes- its allot easier to give in and say "i cant" but its allot more rewarding to say "I DID'!!!
dont give up! You can do this!
Nikki
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Old 10-13-2011, 04:23 PM   #9
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Re: Confused as ever!!!

Thanks for the support Nik and Jayhawk. I know you are right my life is a testament that you can do any thing you put your mind to and when I really think about it I know that. I also realize that nothing in my life has ever been easy so why should it start now.
I do have a question for you guys though have either of you in your research come across any info about someone who has multiple autoimmune disorders does this put them at increased risk for primary progressive? The reason I ask is because I have RA and antiphospholipid antibody syndrome and I am concerned with the dr comments about having all of the symptoms and the MRI looking so good in March. Also is it possible to develop so many symptoms so fast without any visible lesions? Also any info regarding whether there is a definate link between a low serum lymphocyte level?
Any info would be greatly appreciated!

 
Old 10-13-2011, 04:45 PM   #10
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Re: Confused as ever!!!

There are several people I know who have chronic diseases in addition to MS. The chance for Primary Progressive is really MSer dependent. Males tend to progress faster than females.

If your immune system is compromised, than I would think that you would have a chance for other issues to develop, BUT there is no guarantee that they will.

As to links between MS and other diseases, the only similarities are the symptom presentation. I know that Vitamin B12 deficiencies can affect the myelin sheath. If doctors knew about links, they would be on the road to a cure as we speak. I know of no cure on the horizon.
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Old 10-14-2011, 01:12 AM   #11
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Re: Confused as ever!!!

I understand your frustation with comprehension. I do have that problem. I can tell you though I am getting it back. I'm not what I was and I'm not back to reading a book or my bible again but it is coming. Jayhawk is right about the GPS and the break. I only drive now when I have to. I don't work though so quite a bit different for me. Not driving so often has helped me though. For a while I became scared becaused a regular route I would not remember driving it, but I got to my destination. WOW did I run a red light or what. I just couldn't remember. I am on notice from my doctor though, first sign of trouble and no more driving for me. So relax a little. Be very glad that you have a Dr that is aware of your condition. (Stick around you will read some real horror stories about doctors). Just remember its really ok if you have to go back to your notes you still have the will to do an upstanding job.
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