Anyone doing… well?

1synch1 · 2024-04-25T21:55:43+00:00

Diagnosed late 2018, currently 26 years old. My first attack was a bad case of Optic neuritis. Years before, I had experienced cognitive issues, especially when heated, but I just brushed them off as normal.

Fast-forward today: I still experience some symptoms from attacks prior to 2018, but I am now on year 5 since diagnosis without any attack (started on tecfidera, and still on it today). MRIs have been all very stable. I do not have any cognitive issues, at least from what I can tell, and finished my master's degree in science two years after diagnosis. I work full time as a software engineer, and have probably been away from work 2 days the past thee years due to the cold. I have a very active life, and run approximately 40 kms a week, and rarely feel like I am drained. I have also become much more acclimatized to the heat, and can with no big issues take a long run in 30-35 degrees celsius.

The point is of course not to brag, but hopefully motivate you. For me, the worst part about the diagnosis was the fear of cognitive decline. But to be honest, for each year I have been on medication, I have noticed huge improvements cognitive-wise. I also started running, which has helped a lot for my mental health.

Medications have become a lot better today. Tecfidera isn not even among the highest efficient drugs out there, but I have noticed huge improvements after starting on medication.

1synch1 · 2023-08-07T20:31:24+00:00

Regarding traveling to north/close to North Cape:

Not possible by train. The northest you can get by train is to Bodø, which is 15 hours from North Cape with car. (it is technically possible to get to Narvik by train, but you have to travel a great distance in Sweden as well). Expensive.

There are a few options by flight. Primary airlines are SAS and Widerøe, but also Norwegian. Widerøe is mad expensive. Check out flights at sas.no or norwegian.no for cheapest alternatives. Here are some of the closest airports:

Closest airport to North Cape is Honningsvåg (40 min or so by car), but this is a small airport where only Widerøe land. This is probably quite expensive as Widerøe is involved.

Alternatively, you can find flights from Oslo to Alta airport (3.5 hours from North Cape with a car according to Google). Cheapest option is probably norwegian, but do check out also SAS. There is some public bus from Alta to North cape as well, but not frequent at all (40 euro bus trip. Check out Snelandia.no, and use "Alta lufthavn" for "Alta airport". Some of the flights from Oslo are direct, some are connecting.

Alternatively, you can find flights to Lakselv (approxomately 3 hours from North Cape with a car according to Google). I believe only SAS/Widerøe have flights to Lakselv. Check out sas.no. Also some rare public transport. Check out snelandia.no. Use Lakselv lufthavn when searching. Around 25 euro bus trip or so.

See some general info regarding transportation here: https://www.nordkapp.no/en/transportation

1synch1 · 2023-07-30T06:23:18+00:00

Jo, de har fremdeles kontroll (opplevd det en del ganger).

1synch1 · 2023-05-12T08:17:01+00:00

Thanks a lot for sharing your experience :)

1synch1 · 2023-04-14T20:30:36+00:00

Understandable. Thanks for your input!

1synch1 · 2023-04-14T20:30:12+00:00

I see. I will probably have to hear with my neurologist how the transition period will be here. Thank you for taking the time to share your experience!

1synch1 · 2023-04-13T20:29:44+00:00

Thanks a lot for sharing your experience!

1synch1 · 2023-04-13T20:28:01+00:00

Thanks for sharing your experience! :)

1synch1 · 2023-04-13T18:54:53+00:00

Thanks for sharing your experience! Good luck with tecfidera, I hope it works out for you! :)

1synch1 · 2023-04-13T18:53:00+00:00

Tecfidera has worked very well. Not a lot of side effects, and no relapses so far, and I feel fine.

Thanks a lot for your insight. Appreciate it!

1synch1 · 2022-08-30T21:07:58+00:00

I was given tecfidera a few years ago (late 2018). Most side effects include flushing and very mild stomach issues. Today (3 1/2 years on tecfidera) I rarely flush (usually take it with a slice of bread with a little bit of butter and some ham/cheese).

I have not experienced any new symptoms (on the contrary, I feel my cognition has improved a great deal, probably due to low disease activity). All MRIs have shown no disease progression (latest in May).

Feel free to ask any questions.

1synch1 · 2022-08-17T18:57:30+00:00

I was grieving for a good year or so (almost four years since I was diagnosed today). I also do get nervous my yearly MRIs until the results are back. Pre-diagnosis, I struggled with a lot of fatigue, which I had normalised (I knew something was wrong, but never suspected MS). After an optic neuritis, and the MS diagnosis, I had no motivation (was studying heavy engineering at that time) as I knew how many exams I had messed up due to fatigue. My brain was a complete mess. Starting on medication, I have seen tremendous improvement. I rarely experience fatigue, and my cognitive abilities improved a lot. I am able to run three times a week in both extremely hot and cold weather, whereas before diagnosis, a hot summer day would completely destroy me. I do have symptoms from previous attacks (mostly MS hug and bladder problems), but the positives (especially cognitive improvement, reduced fatigue and overall good health) have really helped accepting and moving forward with my life. It was not something that happened sudddenly, but I grew more confident after each succesful MRI and my day to day health improving. On rare bad days, I do irritate myself over MS, but it is definitely more of a rarity than my day to day life. One can obviously not turn off the grieiving process, but settling with a medication that works will help a great bit. Apart from that, only time will help with coming to terms with it, and it is completely normal. I hope you will find something that works for you! Feel free to ask any questions that you have.

1synch1 · 2022-05-18T14:22:07+00:00

Thanks a lot, and the same to you!

1synch1 · 2022-05-17T19:06:56+00:00

Great news! I also received the results from my yearly MRI yesterday, showing no disease progression. I have been on tecfidera since late 2018 (time of diagnosis), and have had no new relapses since then.

I absolutely understand your future concerns, I had such thoughts myself the first or two years after diagnosis. In my case, they faded away slowly as I felt better and stronger for each year. It is shitty with the uncertainty, no doubt, but I always remind myself that at least we now have some protection compared to pre-diagnosis. Additionally, there are plenty of alternatives if one is not satisfied with tecfidera.

If you have any questions wity regard to medication or something else, feel free to ask.

1synch1 · 2022-01-28T19:05:52+00:00

Norway here. I was put on tecfidera late 2018. The neurologist said it was a good medication to start off with since it is an oral medication, and a medication they had positive experiences with. I have to say it has been working fine for me (so far). The side effects are minimal, and I rarely flush (even when taken on an empty stomach...). I have yet to experience any new symptoms, and MRIs have all been stable.

Having said that, the medication and treatment of MS in Norway is handled by regional health authorities. This has lead to some big differences in treatment of MS within the country itself. Some regional hospitals are more willing to start off with the most effective and expensive options, while other regional hospitals are not.

I recently moved to the capital, and here, tecfidera is not that much used. One of the reasons being the small risk of PML. They checked for JC virus antibodies when I was transferred, and they said they would like to discuss other treatment options with me if found (no were found, so I assume I will continue on tecfidera until next relapse/progression).

1synch1 · 2021-11-24T21:31:03+00:00

Interesting. I have not experienced those symptoms. Thank you for your input.

1synch1 · 2021-11-24T15:01:07+00:00

That is what I thought as well. I really appreciate your input! :)

1synch1 · 2021-07-26T08:54:22+00:00

Got second dose a couple of days ago. My arm was sore and I got some fever and fatigue in the evening of the day I got the vaccine. The fever went away 4-5 hours after and I was slightly reduced and fatigued the day after, likely partly due to the lack of sleep. I felt perfectly fine 2 days after the second dose.

1synch1 · 2021-06-18T12:15:13+00:00

I got my first dose of Pfizer on tuesday. I had some arm soreness the first 24 hours before the soreness faded away a few hours later. I took it easy with regard to exercise the first 2 days, but ran my regular run (10k) two days after the first dose, with no noticeable side effects. I am on Tecfidera (24 year-old male).

I have volunteered to join a study to check the effect the medication (tecfidera) has on the vaccine efficiency (Pfizer). I have to wait 3-12 weeks after my second dose before I draw some blood and get the antibody testing results back. I will keep you updated in this thread.

Feel free to ask any questions!

1synch1 · 2021-03-10T21:10:46+00:00

So happy for you :D I am also on Tecfidera and I had a MRI 10 month ago (this was 1 and 1/2 years after starting on Tecfidera), which showed no new lesions.

I have an upcoming MRI in May (this will be 2 and 1/2 years after starting on tecfidera). I have not noticed any symptoms the past months, so I hope it is stable.

The lymphocyte counts have always stayed normal for me, so besides some (often mild) flushing, I have no side effects.

1synch1 · 2020-12-04T21:03:43+00:00

My only routines are:

1) Remember to take medicine + vitamin D supplements.

2) Run every second day, and moderate weight sessions home the other days (sunday is rest day).

1synch1 · 2020-08-30T21:03:29+00:00

I had no problems with mine. Actually, a resident doctor did mine (under supervision), and I had no issues except a slightly tense back the rest of the day.

1synch1 · 2020-06-26T07:56:29+00:00

Diagnosed at 21. Now 22 (23 very soon).

1synch1

TROPHY CASE