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Email....

Okay, so here it is...the email I sent my neurologist.....

I have been doing some thinking recently about my treatment. At my last appointment you mentioned that you feel Avonex is still probably the best bet for me. I have been off the Avonex for about a month now and although I am in the midst of this relapse, emotionally I am feeling great. Over all I am feeling much more like myself (sense of humor, able to handle stress, much more positive). It seems as if over the last 6 months of being on Avonex I had a major change within myself, one that I did not really understand or know how to deal with. I became very depressed and lost touch with many aspects of myself. Sure, I was put on an anti-depressant and that may have helped a bit, but I think I really did experience a major depressive type side effect from this medication.

Having said this, I want you to know that I am committed to doing whatever it takes to have the best quality of life I can. I refuse to let this illness run my life. I have already had to sacrifice more than I would have liked because of it and it is important that I am able to maintain as much of my health as possible for as long as possible. This is why I started swimming, working with a personal trainer, see a dietitian, etc. I understand I don't have control over how this illness progresses, however I do have control over how I deal with the illness.

As part of being committed to having the best quality of life I can, I have been very compliant in following the instructions of my doctors and taking the medications that have been prescribed. Some days I feel like that is all I do...take medication (this is meant to be a joke,lol). I understand the importance of taking Avonex or one of the other disease modifying medications and am hopeful that there is something out there to help me. If Avonex is indeed the best bet I will take this medication, I just want to make sure we can discuss all options as I really do not like how I became lost during my time on this medication. Maybe there is a trial you know about...I have heard also of Cytoxan for MS?

I know it would not be good to go for long without any medication either, seeing how my month off of Avonex has led to a relapse and although I am currently on steroids I continue to have many symptoms (headaches, eye pain, numbness, loss of feeling, drooping feeling in the face, pins and needles, spasms, memory lapses, mental confusion, weakness, fatigue, hearing and voice weakness). These symptoms are bothersome and not something that I want to worsen or continue. I understand as I recover from my relapse many of these symptoms will get better, some will even go away.

I know I am not the easiest patient to treat (as I have other medical problems to factor in). I am sorry for that...unfortunately I was not blessed with great DNA. I hope you have gotten copies of my labs back by now and have seen that during my time off the Avonex my liver function has gone back to normal. This is another concern that I have about being on the medication. Dr. Shaw (my GI) worries about the long-term use of Ibuprofen due to my history of GERD and recent abdominal problems as well. These are things that I would like to discuss before resuming Avonex or making a decision on treatment.

I apologize for the lengthy email. I figured it would be best to email you in advance of my appointment as I know that you are a very busy woman and so I would not want to put you behind schedule on the day of my appointment. I figure this way you know my concerns and we can better discuss them and all of the options so that the best treatment decision is made (without putting a kink in your day, of course!...remember, I used to work in medicine, I know how it is, lol).

Please let me know if there is anything you need me to bring to my appointment (i.e. any information from other doctors). I look forward to seeing you again next month and hopefully by then the steroids will have done their job and I will be back to my old (young) self.

Thanks for everything,

Jaime

By the way, I had an eye exam recently (showed the ON...gives a baseline of where I am). I requested all the information be forwarded to you. Also, I hope by now you have gotten my MRI results. It was mailed out on August 10th. Have a great weekend!

4 comments:

personallog! said...

"...unfortunately I was not blessed with great DNA" Sorry but you have damb fine DNA from what I know of you! You as a person are a great example of great DNA. Your essence is fantastic! I hope you get some way restbite soon. Great update too!

Love you babe
Dave

matt said...

it's great that you're not letting this shit bring you down! things'll start to get better soon. you're strong. you can do it.

mdmhvonpa said...

Wow .. a lot more elaborate than anything I have ever had in the line of correspondance with my health-care providers.

Heather said...

Sorry it's been a while since I have checked in. It's good that your neuro has an email option--I don't think mine does. Mental health woes can really be a pain, as I am battling them myself. Good luck getting it all straightened out!


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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