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Update on MS neuro visit...
Well, saw my doc today. 1st of all, I just think she is the greatest doc I have ever had. I told her that as well...I am just 110% comfortable and have all the faith and trust in her. She always spends at least an hour with me, and it is "almost" like I am having coffee with a good friend. I wish everyone had a neuro just like her.
Having said that, the visit was a bit on the depressing side for me. She shared the letter the "pain" neuro sent her. (she sent me there to see if there was something he could do to "fix" my neuralgias, which are becoming rediculous in the frequency and pain.
The letter is 4 pages long, she copied one for me.
The "basic" problem is a lesion in the trigeminocervical complex, and he said this is going to be very difficult to treat. So, he has changed my meds around (which I knew), and if everything fails he is going to send me to Neuromodulatory surgeryfor evaluation of a central stimulator to stop the MS progression, if possible. ( If anyone knows what this is, can you let me know).
This is all taken from the letter he sent to her. I go back to see him next month, and I see the MS neuro in 3 months.
Anyway, the visit continued with her bringing up disability for me. I am having increased problems with my gait/walking, and lots of weakness in my right hand. My handwriting is changing, and I drop most things now with my R hand. We talked about my work, and she was upset that I dont get any breaks and not even a lunch break.
She is willing to call my boss and have a "long" talk with her. I have a 2 hour round trip commute and she said I need to stop that. (if possible). She understands that it would be difficult to look for a new job, due to my absences from my face/head pain. The only good thing about my job is it is extremely flexible and I love the patient involvement.
So, she thinks I might want to start looking into disabilty and gave me the info for that. She said she would get invloved and hopes that they would approve me. She said most people get denied the 1st time, but then the 2nd time approved. (She thinks I have the qualifications to be approved. Walking with an assistance AFO, vision loss in my right eye and R hand being week.)
That makes me sad, if that becomes necessary, because I do love my work, but not where I work.
The last thing she said, was I MUST lose 20 pounds. I have been gaining weight, about 25 since 4/09 when my mom died, and the DX of ms was made. I stopped doing jazzercise, which I loved, and she told me I could try swimming. I need to have "mindful" eating, and start exercising. We had a long talk about it, and I am really going to try to lose some weight before I see her at my next visit. I need to, or I am going to be in a wheelchair sooner than later.
I am sorry this is so long, I think I should have made this a journal for myself. Actually I think I will do that. I will post and then transfer it to a journal.
Well, thanks so much for reading if you got to this point. Much appreciated.
Michelle
Having said that, the visit was a bit on the depressing side for me. She shared the letter the "pain" neuro sent her. (she sent me there to see if there was something he could do to "fix" my neuralgias, which are becoming rediculous in the frequency and pain.
The letter is 4 pages long, she copied one for me.
The "basic" problem is a lesion in the trigeminocervical complex, and he said this is going to be very difficult to treat. So, he has changed my meds around (which I knew), and if everything fails he is going to send me to Neuromodulatory surgeryfor evaluation of a central stimulator to stop the MS progression, if possible. ( If anyone knows what this is, can you let me know).
This is all taken from the letter he sent to her. I go back to see him next month, and I see the MS neuro in 3 months.
Anyway, the visit continued with her bringing up disability for me. I am having increased problems with my gait/walking, and lots of weakness in my right hand. My handwriting is changing, and I drop most things now with my R hand. We talked about my work, and she was upset that I dont get any breaks and not even a lunch break.
She is willing to call my boss and have a "long" talk with her. I have a 2 hour round trip commute and she said I need to stop that. (if possible). She understands that it would be difficult to look for a new job, due to my absences from my face/head pain. The only good thing about my job is it is extremely flexible and I love the patient involvement.
So, she thinks I might want to start looking into disabilty and gave me the info for that. She said she would get invloved and hopes that they would approve me. She said most people get denied the 1st time, but then the 2nd time approved. (She thinks I have the qualifications to be approved. Walking with an assistance AFO, vision loss in my right eye and R hand being week.)
That makes me sad, if that becomes necessary, because I do love my work, but not where I work.
The last thing she said, was I MUST lose 20 pounds. I have been gaining weight, about 25 since 4/09 when my mom died, and the DX of ms was made. I stopped doing jazzercise, which I loved, and she told me I could try swimming. I need to have "mindful" eating, and start exercising. We had a long talk about it, and I am really going to try to lose some weight before I see her at my next visit. I need to, or I am going to be in a wheelchair sooner than later.
I am sorry this is so long, I think I should have made this a journal for myself. Actually I think I will do that. I will post and then transfer it to a journal.
Well, thanks so much for reading if you got to this point. Much appreciated.
Michelle
COMMUNITY LEADER
Michelle,
Good news and bad news, kisses and hugs!!!
I dont know if you've thought about volunteering whilst on disability, i was more than happy doing what i do on a volunteer basis. I got more out of doing it for the love of than the pay check, just something you might consider :-)
Cheers......JJ
Good news and bad news, kisses and hugs!!!
I dont know if you've thought about volunteering whilst on disability, i was more than happy doing what i do on a volunteer basis. I got more out of doing it for the love of than the pay check, just something you might consider :-)
Cheers......JJ
Thanks for your responses Alex, Islay and Erin,
Yes, there are indeed good neuros out there. She was my second one, and I feel lucky to have found her.
The whole work thing is something I cant stop thinking about. I am actually off to work in about 40 minutes...
I do love my job (what I do), just not this particular job. Working makes me feel good and content. I really love getting a paycheck, makes me feel like I am adding to my family financially. I guess there is lots of emotional reasons for me.
Anyway, Thanks again...Now if I can just stay away from the M@Ms at work today...
Michelle
Yes, there are indeed good neuros out there. She was my second one, and I feel lucky to have found her.
The whole work thing is something I cant stop thinking about. I am actually off to work in about 40 minutes...
I do love my job (what I do), just not this particular job. Working makes me feel good and content. I really love getting a paycheck, makes me feel like I am adding to my family financially. I guess there is lots of emotional reasons for me.
Anyway, Thanks again...Now if I can just stay away from the M@Ms at work today...
Michelle
First let me say that I am so happy that you have a doctor that you love. I don't here that very often but this week alone 3 ppl have said it. It's great for everyone to know that there are still great doctors out there.
I'm sorry that the news wasn't wonderful but at least there are still options. No one seems to be giving up and neither should you.
As for the disability only you can make that decision. My doctor asked me twice this year if I was ready. My job is at a desk, calculator and computer - sounds cushy right? Well my biggest MS damage is cognitive and every day I wonder if I can still do it with out making a mess.
Still I love my job and the social life that comes with it. I know 3 ppl that left work because they didn't need the money or figured that if they got disability they could then use their energy on fun things like family. I don't want that to happen to me and I know I would miss my job so I am holding out as long as I can.
Could you find work with a shorter commute? If you do decide it's time to leave your job, I encourage you to do something like volunteer work or anything that will get you out of the house not with the kiddies but as a grown up functioning and proud of it.
Wow - I sound like I'm standing on a soap box. What I really wanted to say is I care and don't want you to give up!
Hugs,
Erin :)
4 boys you have? wow, that is too cool. i hope you have a fab time watching the football game all together tonight!
glad your neuro is helping you with every avenue here...i do wonder about the option of looking for part-time work a bit closer to home? and i suppose it wouldn't be easy, but is it at all a possibility to think of moving closer to your job?
the two day recovery time is really rough though, and that would take a lot out of what quality time you can spend with your fam. so truly, the disability option is something to seriously consider as well. perhaps if that were the route you chose, you could volunteer somewhere close to home?
lots to think about michelle, best of luck and truly hope you have a fabulous weekend!!
also hoping the re-arrangement of the meds helps with the TN.
xo michelle(islay!)
glad your neuro is helping you with every avenue here...i do wonder about the option of looking for part-time work a bit closer to home? and i suppose it wouldn't be easy, but is it at all a possibility to think of moving closer to your job?
the two day recovery time is really rough though, and that would take a lot out of what quality time you can spend with your fam. so truly, the disability option is something to seriously consider as well. perhaps if that were the route you chose, you could volunteer somewhere close to home?
lots to think about michelle, best of luck and truly hope you have a fabulous weekend!!
also hoping the re-arrangement of the meds helps with the TN.
xo michelle(islay!)
I get the weight. I need to lose 25 lbs as well. I did walk 3.6 miles today with a friend and rode on Wednesday. I a started swimming recently as well. I do eat at night out of boredom.
Alex
Alex
Yes, I think you are right. Although she feels my job is causing me much fatigue (which is true) and it takes me about 2 days to "recover" from the day at work. Good thing I only work part-time. She also feels the job is adding to my face/head pain, with the fatigue bringing it on. She wants me to do everything possible to help my face pain. I am with her on that one.
Basically I want to lead a more functional life with my hubby and young children. The pain makes me not be a part of my family, and isolates me. I see where she is coming from, and part of me agrees, but being 42 and "losing" my career does make me sad.
I am grieving all the losses this disease has given me, and they seem to be continuing. I do try to go along, and basically am doing well, so I am not complaining here, just seeing the reality of things.
Lots to think about.
For now, I am excited about tonight's football game, and spending time with my 4 boys and hubby. I am worried about the walk however, but can probably get dropped off in front, if traffic allows.
Thanks again for your response Suman, I appreciate it.
Basically I want to lead a more functional life with my hubby and young children. The pain makes me not be a part of my family, and isolates me. I see where she is coming from, and part of me agrees, but being 42 and "losing" my career does make me sad.
I am grieving all the losses this disease has given me, and they seem to be continuing. I do try to go along, and basically am doing well, so I am not complaining here, just seeing the reality of things.
Lots to think about.
For now, I am excited about tonight's football game, and spending time with my 4 boys and hubby. I am worried about the walk however, but can probably get dropped off in front, if traffic allows.
Thanks again for your response Suman, I appreciate it.
It sounds more like the doctor wants you to retire and take disability. It seems as if you are questioning it. My opinion for what it is worth, I wouldn't do it unless it is something I WANTED. If you have any doubts, don't give into it. You may look back with sadness a year from now.
Just something to consider.
Just something to consider.
She also gave me a pamphlet about Amprya, but she told me she is not all that convinced that it works. She also wanted me to start Baclofen again for my spasms. I told her I didnt want to start any more meds, so she said I could take a smaller dose of zanaflex during the day,
Also, my R hand with the pain in the fingers now have the "burning" pain like my face does, so she feels this is MS related, and we will watch it.
LORD. enough. This MS disease makes me sick! In more ways than 1.
Also, my R hand with the pain in the fingers now have the "burning" pain like my face does, so she feels this is MS related, and we will watch it.
LORD. enough. This MS disease makes me sick! In more ways than 1.
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