Hi
I am off to the dr this afternoon to get checked out as I have had the feelings below.
The last couple of weeks I have been on Tecfidera and apart from hot flushes I have tolerated fairly well. Should I have blood test after first month or after 3 month?
I have noticed that for the week or so I have needed to urinate frequently and I’m not entirely convinced my bladder is emptying fully. I also have a feeling of my right ear being slightly blocked and that the right side of my mouth when drinking isn’t quite as it should be, in terms of loss of power when I had a milkshake yesterday and if I don’t concentrate I might dribble some water.
I was wondering if anyone had thoughts on this? All very random but guess that’s the nature of the beast!
i am concerned that I am on a slippery slope which scares me, there have been tears.
Tracey
Hi Tracey
I too am on Tecfidera, and have been for about 5 months now . I get my bloods checked every 6 weeks, but they did check it after 1 month also. I get a few side effects, and can only relate to well for the hot flushes ! I find this worse if I have’nt eaten enough both before or after taking them . I try to take half way through a meal .
Other symptoms you say, well I can relate to some of them . The urination I find more frequently, and when I have to go, I have to go !! I do get numbness sometimes in my mouth also .
I like you worry that symptoms are getting worse, and they may be, but things are always worse when you worry about them, so I hope knowing that your symptoms are not unique to you, helps to calm the nerves a little
Ant
Hi Tracey. I seem to think we began Tec at around same time. Thankfully I’ve not had any problems with it, apart from abdominal bloating making me look pregnant some days. Personally I’d start with a gp appointment. I’d take a fresh urine sample into my gp. Have it dipped there and then it may get sent to the lab for further testing. You don’t always actually know that you have an infection. Get her/him to check out your ears too. Any ear problem could have an affect on your mouth too. I can empathise with your fears and tears. It’s all scary stuff, this ms lark. Make that appointment. You’ll probably feel better knowing you’re doing something constructive. 
Hi Guys
i am back from Dr she is now trying to get hold of specialist and will phone me. The Dr thinks my symptoms are the Tec and since I have been on full dose. The Specialist will then probably have to speak to the Neurologist so I don’t expect an answer soon.
I feel a fool for getting a little teary at the dr’s but I’m scared.
Tracey
Did she check you for a urine infection Tracey?
I think the symptoms you describe are all part and parcel of the MS burden.
They come and they go and usually, luckily, their worst consequence, are the moments of fear and trepidation of whether this is a relapse and how bad will it get before it starts to get better.
Hot flushings etc are typical of the Tecfidera; bladder control, numbness etc are not. It surprises me to hear that a medical practitioner would suggest otherwise; but in the face of ignorance (of the side effects of a new drug for example) it is best to sound authoritative in one’s conclusions!
I share with you the fears and tears of ultimately what is worry about the future unknowns and in this respect, you are no different to any other human, with or without MS.
A fact of life; someone will wake up to day and get hit by a bus. Someone else will be diagnosed with MS that will be benign and affect their life not one bit.
You have a set of challenges right now and the uncertainty of your future is coloured by a diagnosis of MS. but you are on a drug that will make a positive difference to the quality of your life in the long run. and so persist with it! please!
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Hi
I took urine sample with me which was all clear. Dr did tests for Bells Palsy again she didn’t think it was that. I am awaiting a phone all from her when she has got hold of Specialist.
I wish I didn’t get myself so worked up over ‘what ifs’ as it can’t help.
Trace
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Ah, the “what ifs”. They’ve been the bane of my life since adulthood. Hang in there.
The Dr called and had spoken to the on call physician and I have been advised to stop tablets. The Dr I saw will speak to specialist in the morning who I guess will then speak to the Neurologist and I will then be given a plan.
I don’t like how I have been feeling the last few days which I believe ties in with me being on full dose but I was hoping I wouldn’t have to change meds. Next week would have been a month since starting Tec I have no idea what will be recommended.
Tracey
Hi Tracey
What I am finding is that it is very much a guessing game with meds . I have been diagnosed over a year now, and I still dont think I have got the balance right yet.
Hang in there, you will get there in the end, and when you do it will be worth the wait !!
Ant
Thank you for all your posts. My MS nurse spoke to her colleagues in a UK MS centre and they believe what I have experienced are Tec side effects and to go back on the tablets and they will hopefully reduce.
I had a blood test today so will have results tomorrow/Monday.
Tracey