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New symptom ... do I need to tell anyone?

Hi

I was diagnosed on 26 September and start Tecfidera on Thursday next week.

For a couple of weeks now I’ve had a new sensory symptom on my upper thigh. It comes and goes and feels a bit tingly, almost like a graze at times.

Do I need to let my MS nurse know? Or just keep a record of it?

Do you think this means there is a new lesion?

I’ve also had some neck and head pain. Not sure if this is a stress thing or related to MS?

Sorry for the questions - rather new to all this!

Thanks :slight_smile:

Hi Wobblync,

I think you need to tell your MS nurse or neurologist or both- but I am not an expert myself yet either!

I was wondering, seeing as you are starting Tec soon, what happened before you started? did you have to have a recent MRI? I read somewhere you need to have one before taking Tec (Maximum three months before). Did you have that?

I am just wondering, I was diagnosed 2nd of September this year. I have an appointment with the MS Nurse on the 28th of December to be screened for Tec- I wonder what it means, as in I wonder what he screening entails?

You certainly have had more luck with timings than I have! I am jealous! (-: It has all taken so long.

Do you ever doubt that Tec is the right medicine to take and might make things worse and that the big pharma companies are making lots of money from these medicines and keeping people ill?

Sorry to throw that in. I will start taking Tec or whatever else they might offer, but these thoughts linger in my mind.

Emily

Hi, I’m new to this too, but in general, I think if in doubt, let your MS nurse know.

I don’t know if new symptoms mean new lesions, good question, but again you could ask your MS nurse.

yes your timing has worked well. I was diagnosed two weeks ago and start treatment next week. Also pretty lucky. That’s if you can call anything lucky in this MS world!

Anjo

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Words and names of things are not my strong point, add ms brain fog & dexleia = conversation is a little challenging. Lol. But, their is something they have to test for before starting on Tec. You also have to have 3 monthly blood tests to check all is ok once on it, hopefully a nice knologable person who can explain properly will respond. If not I will look back on posts & read my Tec info leflet & get back to you.

hope you come to terms with needing to become a long term drug taker !

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the screening for tecfidera will be establishing a base line of your lymphocyte levels.

the 3 monthly blood tests will keep a check on these too.

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Hi Emily

Thanks for your reply :slight_smile:

I plan to start the Tecfidera on Thursday and need to let the nurse know so I’ll add a line and let her know about the tingly leg. I’ve also been having a bit of pain in my right arm so I’ll let her know about that too.

I had also read the thing about the need to have an MRI no older than three months but my neuro doesn’t seem worried about that. My most recent was in May and I’m supposed to have another in December. I think what the others have said about the screening is correct, I just needed to have blood work. The results came back quite quickly and the Tecfidera paperwork was processed then. It’s been almost a month since my MS nurse appointment, so it does take a little while from that point. On the upside you won’t be on it over Christmas … I’ll be going up to the higher dose a week before Christmas so I’m a bit worried about how I’ll feel. There is prosecco to drink and chocolates that need eating after all!

I totally believe that the pharma companies are making stacks of money, but I’ve got to give myself the best shot of being well for as long as possible … I do know where you’re coming from though. I’m pretty sure DMDs have changed things massively for those diagnosed with MS and I’ve got to have faith in my neurologist. That’s how I feel.

Good luck with everything!

x