Last reply 2 months ago
Just having a rant

I’m on tec & have been for the last 2yrs. The flushing never went away. My biggest prob is I’m prone to infections, I’ve never had as many since being on tec. Now, my neurologist has advised me everytime I hav an infection to stop takin tec so my point to her was I’m off it more than on it. They seem to be reluctant to change my treatment as any new lesions on my brain & spine hav been insignificant. I’m awaiting another appt for brain & spine MRI I see my neurologist on 24th & would like to speak to her about dif options bcos before I just let everyone else decide wat they think I should do. Would like to have tried cannabis to help wiv pain & spasms in my arms legs & hands but I hav young children & live alone with them, social workers are involved & explained its illegal & I cud actually lose my children if I do use it. I’ve tried dif types of cbd oil which haven’t helped either. My hair has definitely thinned also. I’m exhausted both physically & mentally & don’t know what else I can do to help myself. I think this is the most I hav spoken about my RRMS since my diagnosis in 2014

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rmdaniels
2 months ago

@carrieh
I’m glad you have an appointment on the 24th! Sounds like you need a serious conversation with the doctor! Life is rough enough raising kids on your own, much less dealing with a chronic illness. God bless honey. Hope the doc has some good changes/suggestions for your situation.

I’ve had 7 neurologist I’ve learned to speak up tell them what I will and will not do. If you dont they will just prescribe away. My 3rd got me addicted to opioids and told me not to come back. After that and doing rehab on my own I learned the hard way to speak up and be heard. Good luck and sending good vibes your way my friend.


stumbler
2 months ago

@carrieh , rant perfectly justified.

Any treatment has to fit comfortably into your lifestyle. Whilst the Tecfidera does appear to be doing a job for you, if it continues to make you uncomfortable, then it becomes a quality of life issue.

You’re well justified in asking for alternatives, but do your own research first, so that you are aware of all the options. Check this webpage, following the treatments tag :-

https://support.mstrust.org.uk/shop


rogersouthall
2 months ago

carrieh, I am not going to rant on about the drugTecfidera, we are all different, CBD oil is worth a thought, whatever, you are the boss, ask questions and be firm but also polite
http://www.wholesorts.com take a read as some of your points are listed, good luck

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