Hopefull

[Maly]

Hi everyone!

I am a 25 year old girl living in Scandinavia(so i apologise in advance for my spelling;)
I was just diagnosed three weeks ago. I have already started on Tecfidera and have finished my 2nd day with the full dose.

Fysically Im doing ok, some minor flushing 3-4 hours after taking my morning dose, a bit tierd(may have somthing to do with the mental stress of de diagnosis and the lack of dayligth here up north) and some wierdnes with my eyes. After what I have read most of this will disapear in a month or four.

Mental Im stugeling a bit with the diagnosis and my future. My two main leasons are down in my spine(one in my neck and one around bellybutton hight), I also have three more in my brain, but they are very small. Is this bad? The symtoms from these attaces have disapeard and the only symptom I have left is the tingeling in my legs.

The nurse in charge of me is telling me to be optimistic and that several with MS live close to normal lives, but I have a hard time beliving her. Is she right?

I could really need some positive advice. Christmas vacation is coming up and I know I have to tell my parents, who will posible take the news worse than me. So I could realy use a dose of realistic hope.

I wish you all a pleasant advent and stable MRIs;)

[lyndacarol]

I am a 25 year old girl living in Scandinavia(so i apologise in advance for my spelling;)
I was just diagnosed three weeks ago. I have already started on Tecfidera and have finished my 2nd day with the full dose.

…

I could really need some positive advice. Christmas vacation is coming up and I know I have to tell my parents, who will posible take the news worse than me. So I could realy use a dose of realistic hope.

Welcome to ThisIsMS, Maly.

You were diagnosed only THREE weeks ago and have already started Tecfidera!!! I have a few thoughts and questions:

How long and how thorough was the investigation that led to your diagnosis of MS? MS is a diagnosis of exclusion, made only after other more likely causes for symptoms have been ruled out. Were you screened for a possible vitamin B12 deficiency? Thyroid problems? Celiac disease? And there are dozens of other conditions which share MS symptoms which need to be crossed off the list of possibilities. Do you have the actual number results for any tests that have been done?

For example, if you are in Norway, the HoloTc test has been the standard since the mid-1990s to screen for B12 deficiency. A serum homocysteine test and the methylmalonic acid test are also done in initial testing to confirm a deficiency. Did your doctor order these tests?

I have not used Tecfidera, but it is my understanding that it is used AFTER other medications have been tried and are unsuccessful. I am surprised that your doctor is using it as a first-line treatment.

You mentioned "the lack of daylight here up north" and it reminded me of the recent work of Brazilian neurologist, Dr. Cicero Coimbra, who is treating MS patients in Brazil seemingly successfully with high-dose Vitamin D. Have your vitamin D3 levels been tested? What was the number result of this test? Many nutrient deficiencies can look like MS.

I think you have many reasons to be optimistic and positive – do a little searching on the Coimbra Protocol, just some of the most recent encouraging news.
God Jul!

[Maly]

Hi, And thanx for thw quick responce:)

Yes I am norwegian. I was actually admitted to a hospital to get results faster. I had my first attac in my neck about two years ago, but MS was never looked as an option, mainly since I have a bit of problems with stress and backpain in general. When I got numb in my legs my docter sendt me direcly to the hospital where I was poked and probed for three days.

They have taken all the standard blodtests and they did not show any different diagnose unfortunately. They did also do a spinalfluid test. The last results on it has not come back but it did show withe bloodcells in it. As I understood the nurse, there was no other options left for differensial diagnosis.

They gave me tecfidera because of my young age(easy to administer myself) and to give me the best chances i guess. The nurse clasified it as borderline to 2nd line treatment. After my small mental breakdown after recieving the diagnose I decided that I wantet to figth and start figthing as soon as posible. So they gave me Tecfidera. It is not my style to "gå rundt grøten" ;)

Regarding the D3 levels I have no idea about the results but I asume they where tested. Since I am pretty new at this I have no idea what to ask for, all I can do before I learn more is to count on the doctors doing their jobs.

I have, not yet atleast, not allowed my self to hope for a miracel cure some day. But I do firmly believe that there will be even beter medications in the future and that maintaining status quo or atleast similar will be a realistic goal.

God Jul:)

[Scott1]

Hi,

Firstly, I hope it all goes well for you. I am also surprised how quickly they jumped to Tecfidera.

You are right when you say that you count on the doctors before you learn more. Please do try to learn as much as you can. There is a lot posted here. All of it is genuinely from the heart but not all is useful. See if you can pick up on the pattern of posts and ask a lot of questions. There is definitely a lot of debate and some of that is very useful. MS commentary swings like a pendulum: its all over to the right, then its all over the left but the best is probably somewhere in the middle.

Regards,

[ElliotB]

"I am also surprised how quickly they jumped to Tecfidera."

The right time to start on a DMD is immediately. Not sure why this would be a surprise.

Positive advice? Realistic hope? There are many things you can do for yourself in addition to the Tecfidera that will offer you additional help and hope over the long term. Do a lot of reading/research and make wise decisions (I am referring specifically to diet, exercise, supplements and lifestyle change).