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Staying the Course?
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cactibabe1 posted:
Hello MS Friends,

I am going to wait on my going on Gilenya, with my allergies and the recent heart issues in Europe and FDA is investigating in USA. For those of you who are taking Gilenya and it working keep taking if it works for you. My local neuro felt we should give Betaseron a 2nd look. I been off meds 8 months and I am relapsing with numbness in the areas we do not want it in. I just had my training last Wed hope it will have a reboot for me. I am weary of MS friends. It been since 98 til now I just turned 51 and I am tired of relapses and building up again. What scared me was I told my doctors I do not wish to live with it anymore. I tired now. I am not sure as of yet what that means deep inside for me. Will I give up, not try any longer or keep hoping just in case? I do have wonderful support of my doctors, therapist and friends. From a patient point of view " they are not living with it we are" I do have blessing as well despite all of this I am still walking with my cane and not wheel chair or scooter as of yet. However, I am not having luck with Hap or local housing on getting an handicap accessible apt unit. I have a cute apt but it not wide enough or handicap ready. I trip and lose balance all the time. I have so many bruises and fatigue is wearing me down. You get up with big plans of things you wish to do and want to and after a few hours fatigue sets in. I am also taking Ampyra it is keeping me awake not to mention the loud students nearby. It is getting to me. I wish to support all of you and I am not feeling as hopeful anymore for myself. I must acknowledge it has been a rough 8 months. I will give the Betaseron a chance. Thanks for reading. Cactibabe
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AMLYGE responded:
I am sorry to here Gilenya isn't working for you - Rebif and Tysabri didn't work for me.

I have been through bad days myself and I hope that they get better for you.

Reach out for help if you need it or vent on here - we will listen but please keep your head up!

Best wishes
AmLyGe
 
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cactibabe1 replied to AMLYGE's response:
Thank you for caring,

If it were not for many of you after coping all of these years. I may have given up by now. Good thing is I am back on my original med before the Copaxone hive med. I am feeling better but being off of meds for 8 months have put me a risk. My bladder not working well and I have numb spots in some areas. I just went back on med a few weeks ago. It may surprise me and work well again. I shall not give up. I have a wonderful church community, friends and our support. It means a lot. I hope you are also doing better or staying at a level that you can manage.
 
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cactibabe1 responded:


Doctors?

Whew, I am on a new med and gave up Betaseron. Once you become immune, it does not help. It was a great med for me for 8 years. I Good news is still hiving. Not being on meds 8 months has put me in secondary MS. Numb spots and fatigue. I am lucky, I still walk with a cane and have a great team of doctors all working together. My neuro wanted me to go for psych testing on cognitive issues. The doctor had seen me before asked why do you have a cane. I knew then that MS meant nothing to him and was not familiar with MS. I had to meet with him month before the test. He seemed nice asked how I was, why I had a cane and my life. I was proud I went to college, sad over mother's death and felt I come through a lot. His test was over the top. In his report school was pointless, mothers death not import and too dumb to do puzzle. His assistant did the test and thought I did well. He did not per his comments. No mention of items I did do well on. Had me there 8 hours.

Since I have numbness in fingers having me work on a puzzle fast, pick up put in and pin pick up no can do. Since my memory was affected, I was not able to answer many questions. I did draw a very nice picture of a woman dressed for work. When results came in tsent it to my doctors, was negative and judgmental.

He did not consider side affects of Betaseron, steroids having MS. My going back to college with MS and graduating was not important. Said people with MS cannot hold jobs, I must of lied about my BSW and I am a dumb illiterate women with ADD? This was not the test the doctor wanted. He was not looking to see if I am smart or dumb. He wanted the areas attacked by lesions reviewed.

I did not wish to go to this doctor another neurologist sent me 10 years ago and did not like doctor felt he had bias on MS and refused to consider it. Did not do the test asked. He is supposed to be the Dr. in my area to go to. My doctor was trying to find someone closer to home.

I was there excessively long 8 hours with MS. My current doctors did not even wish to show me the results. All Dr's were displeased and Neuro felt I was better then 10 years ago. My primary made a copy after I asked. He was suspicious that this doctor did not send a copy to patient, who it was on and insurance was paying for test.

Felt he may have ran 15 or more test to get extra money from the insurance co when he bills them. Next time Dr. will send me to MS Center. Good news is I have started Gilenya and this is my 2nd week and no issues. Only thing I can say is choose doctors wisely and do not believe all you are told if the doctor is deceptive. Go with the feeling your gut tells you.
 
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Anon_31384 replied to cactibabe1's response:

My fingers missed type. I am not still hiving.


Whew, I am on a new med Gilenya and gave up Betaseron. Once you become immune, it does not help. It was a great med for me for 8 years. Not being on meds 8 months has put me in secondary MS. Numb spots and fatigue. I am lucky, I still walk with a cane and have a great team of doctors all working together. My neuro wanted me to go for psych testing on cognitive issues. The doctor had seen me before asked why do you have a cane. I knew then that MS meant nothing to him and was not familiar with MS. I had to meet with him month before the test. He seemed nice asked how I was, why I had a cane and my life. I was proud I went to college, sad over mother's death and felt I come through a lot. His test was over the top. In his report school was pointless, mothers death not import and too dumb to do puzzle. His assistant did the test and thought I did well. He did not per his comments. No mention of items I did do well on. Had me there 8 hours.

Since I have numbness in fingers having me work on a puzzle fast, pick up put in and pin pick up no can do. Since my memory was affected, I was not able to answer many questions. I did draw a very nice picture of a woman dressed for work. When results came in tsent it to my doctors, was negative and judgmental.
He did not consider side affects of Betaseron, steroids having MS. My going back to college with MS and graduating was not important. Said people with MS cannot hold jobs, I must of lied about my BSW and I am a dumb illiterate women with ADD?

This was not the test the doctor wanted. He was not looking to see if I am smart or dumb. He wanted the areas attacked by lesions reviewed. I did not wish to go to this doctor another neurologist sent me 10 years ago and did not like doctor felt he had bias on MS and refused to consider it. Did not do the test asked. He is supposed to be the Dr. in my area to go to. My doctor was trying to find someone closer to home.
I was there excessively long 8 hours with MS. My current doctors did not even wish to show me the results. All Dr's were displeased and Neuro felt

I was better then 10 years ago. My primary made a copy after I asked. He was suspicious that this doctor did not send a copy to patient, who it was on and insurance was paying for test. Felt he may have ran 15 or more test to get extra money from the insurance co when he bills them. Next time Dr. will send me to MS Center. Good news is I have started Gilenya and this is my 2nd week and no issues. Only thing I can say is choose doctors wisely and do not believe all you are told if the doctor is deceptive.

Go with the feeling your gut tells you on a doctor. Take care all.

Cactibabe


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