Diagnosed April 2016...Being pushed to start Tysabri

[Savvyone]

After my initial diagnosis and being misinformed by neurologist, got 2nd opinion and there is a big push to start Tysabri asap. After a few weeks of coming to terms with it, I relapsed 6 weeks later. Had a pretty full on time with multiple side effects from steroid Injections but was advised to finish the course but it was giving over a longer time frame. Went to see neurologist again and couldn't understand the push as was told I had no active lesions but have over 20 small ones all over my brain and "damsons fingers" was the confirmation of having rrms. It wasn't until 4th neurologist visit that I was told I did have active lesions on MRI a d advised I'm at a high risk of another major relapse that will likely leave me with a permanent disability. So I'm still confused as I've never had a straight answer or discussion about other treatments or options. I'm a single mum who's daughters of 19 months is having a full on operation soon and I want to wait till after she recovers to possibly start treatment which was frowned upon my neurologist. Wish I could get 3rd opinion and not rushed through the explanation of MS etc. My symptoms are there daily but I'm dealing with it best I can, only in recent weeks has my ankle been locking up and brain fog is a daily battle. Should I get a 3rd opinion or trust in my current neurologist who us well k own in the MS field?? I'm worry about pml and have not yet been told results of jc test.

My blood work came back all good which was a surprise as my iron has been low after giving birth. I take vitamin d, magnesium and iodine to give my body some extra help. Im on anti depressants which I forget to take!

[lyndacarol]

My blood work came back all good which was a surprise as my iron has been low after giving birth. I take vitamin d, magnesium and iodine to give my body some extra help. Im on anti depressants which I forget to take!

Welcome to ThisIsMS, Savvyone.

In your blood work, what was the actual number result for your vitamin D test (the "25-hydroxy D" test)?

[Savvyone]

I wasn't told, she just looked over the pages and said it all was fine! I've emailed the receptionist and asked for a copy as I'm never offered one for my own records. I'll let you know once I get it

[ElliotB]

There are many medications for MS. Do your homework on them and pick the one you feel most comfortable with. You should not be 'pushed' to take something you are not comfortable with.

[NHE]

Should I get a 3rd opinion or trust in my current neurologist who us well known in the MS field??

Look up your current neurologist in the Dollars for Doctors database and see if they're there and who's buying them lunch.
https://projects.propublica.org/docdollars/

I'm worry about pml and have not yet been told results of jc test.

You are correct to be concerned about PML. It's worse than MS. The problem with the JC virus test is that the JC virus is fairly prevalent and that even if you're JC negative when you start Tysabri, you could switch to JC positive at any time thereafter. In addition, getting off of Tysabri can be problematic on its own.
http://www.thisisms.com/forum/tysabri-a ... ml#p200117

In addition, there's only a 12% absolute risk reduction in disability progression with Tysabri.
http://www.thisisms.com/forum/tysabri-a ... ml#p213915

Yes, I know that they like to quote the 41% relative risk reduction. However, if you're deficient in vitamin D3, then you can get a 41% reduction in relapse frequency by bumping it up.
http://www.thisisms.com/forum/introduct ... ml#p243130

[Savvyone]

So I got my blood work results... I need to get Dr Google so I can understand what the codes/abbreviations mean. Report said Vitiam D level 48L. There were some words and numbers I Red text but didn't know ow what they. Ea t!

Had to ask 2 times for JC results.. And I tested positive for it and my index level is 3.45?? Does anyone know if that's a good index level or not

[lyndacarol]

So I got my blood work results... I need to get Dr Google so I can understand what the codes/abbreviations mean. Report said Vitiam D level 48L. There were some words and numbers I Red text but didn't know ow what they. Ea t!

I am confused by the units in your vitamin D level results… In the US the units used are ng/mL; many other countries use nmol/L. Does this mean your level is 48 nmol/L? If so, your vitamin D level is dangerously deficient. If you are in the US and your level is 48 ng/mL, it would fall within most standard ranges for a healthy person. But for patients with neurological symptoms, there are neurologists who recommend a level between 80-100 ng/mL.

I suggest you discuss this bloodwork with your GP.

[Savvyone]

I wish I knew how to read this full blood report better! , can you post an image in this post??

It is the nmol/L. On the following page it has the ranges on it 30-49 nmol/L in classed as a mild deficiency

There is also a handwritten note attention to my neurologist saying waiting on Tb result. No T4 10.1 Hx of anaemia please review?

And do you or anyone else know what it means when some results are in red? I can't get in to see my GP till Tuesday.

I looked info regarding the teiter ranges of jc index levels too. Has anyone else had a rather high positive JC result? I know you can have Tysabri if your positive or negative and there is recent research stating a negative result can turn positive while using Tysabri but haven't come across alot people that had high range result. Would like to know what options they went with or did they start Tysabri anyway?

I was expecting my iron and vit d levels to be low and was rather surprised when neurologist told me the bloodwork results were fine but now concerned again if some levels are rather low why didn't she tell mm e they were low??

Sorry for the multiple questions... Just at a loss with next steps and not being told everything or have anything explained properly

[NHE]

I wish I knew how to read this full blood report better! , can you post an image in this post??

Sure, pictures are ok if appropriate for the forum. Please see the following post in the Forums FAQ topic. http://www.thisisms.com/forum/site-supp ... tml#p40760

It is the nmol/L. On the following page it has the ranges on it 30-49 nmol/L in classed as a mild deficiency

If correct, that's pretty low. A good D3 is about 50 ng/mL. Multiply ng/mL by 2.496 to get nmol/L. You want D3 to be around 125 nmol/L.

There is also a handwritten note attention to my neurologist saying waiting on Tb result. No T4 10.1 Hx of anaemia please review?

T4 might be a thyroid test. I assume Hx is shorthand for history. Have you been anaemic?

And do you or anyone else know what it means when some results are in red? I can't get in to see my GP till Tuesday.

Are they out of the given range?

[Savvyone]

Sorry.. It's a bit confusing... But these days.. What isn't lol.

OK, it appears the most recent opt is in black and white..somw text is in bold though. The H or L next to individual results means High and Low??
The next few pages has 3 columns with different dates starting with the current blood test compared to the last 2 ones I've had done. There are so.e numbers in red there and towards the end I saw all results in 3 coulms are red.. But then saw these are from Jan last year.. Had bad recovery from c section.. I was needing blood transfusions and had a pretty bad infection and blood clot.

[Savvyone]

T4 might be a thyroid test. I assume Hx is shorthand for history. Have you been anaemic?

Never been anaemic but after serious haemorrhage during c-section my blood was not recouping and I was heading towards being anaemic.

I'd thyroid issues linked with MS

[NHE]

Sorry.. It's a bit confusing... But these days.. What isn't lol.

OK, it appears the most recent opt is in black and white..somw text is in bold though. The H or L next to individual results means High and Low??

Yes.

[NHE]

Try looking stuff up at this site...

https://labtestsonline.org/understanding/

[lyndacarol]

But then saw these are from Jan last year.. Had bad recovery from c section.. I was needing blood transfusions and had a pretty bad infection and blood clot.

In preparation for seeing your GP on Tuesday, make a list of questions to ask.

Please ask about your vitamin D level. In my opinion, 48 nmol/L is dangerously low. People with low vitamin D are very susceptible to infections. (Perhaps this contributed to your "pretty bad infection" after your C-section.) In fact, vitamin D deficiency during pregnancy increases the risk of complications, including preeclampsia and C-sections. (https://www.vitamindcouncil.org/blog/ar ... pregnancy/)

Also, ask about possible vitamin B12 testing. (You had C-section surgery; surgery uses general anesthesia; nitrous oxide is usually part of anesthesia; nitrous oxide inactivates the vitamin B12 in your body – this may have caused a B12 deficiency and neurological symptoms, which you have not yet been able to correct.)