Biotin - again! And new doctor!!!

[Virginia]

First of all, I met my new Neurologist yesterday for first time since the one I just loved left. Agate, I got you and whoever else it was that said their Doctor was cute (maybe Linda) beat. His picture does not even resemble him. I was so surprised. He is HOT, but also I just plain liked him. He is young and suppose to be the MS guru in this group. We did talk about different things. The main take away was Biotin.

He asked how I felt about going on it. He says there is some indication that it stops progression. I have read everything I could find on this forum by BBS and Cherie and they did not seem to have problems until they got up to 300mg per day. He only mentioned me going on 100mg. He didn't say anything about increasing the dose at a later time. He did tell me it was expensive. He would prescribe it through a compounding pharmacy so that I would get a high quality and it would be about $80.00 per month.

Apparently, he has other patients on it because he said some people could not tolerate it. I tried to join FB Biotin group, but so far I have not been allowed to post there. I guess maybe I am in pending status. I also cannot read what they are saying about it.

Otherwise I am to remain on Rebif. He told me that he would fight for me to keep getting Rebif if he could. I told him it might be a financial issue and I told him that PAN had cut my grant way down. He seemed surprised. I also received a letter from insurance company about information they were collecting for CMS. This was my first time getting anything like that since PAN started helping me. I grinned, kind of laughed and said something to the affect "Wait a minute, I thought everyone said it was Obama who was putting on all the regulations". He also grinned and kind of snickered.

He told me that my other Doctor had kept excellent notes and he had been pleased with me. I told him what that Doctor said the last time I saw him. I told him that meant I would have to get use to another Doctor and I really didn't look forward to that. My old Doctor said "You will not have a problem - he might". This Doctor laughed. There were questions I wanted to ask and forgot. I will start writing them down. However, I don't know if in six months I will see him or if it will be back to the NA. I had rather see him, he is so easy on the eyes and I do like his demeanor.

So, anyone have any thoughts about me going on 100mg of Biotin. What I again got out of what BBS said and to some extent Cherie they seemed to think they were going to feel better on it. This is not what I got out of what he said to me. I got the feeling that it is somewhat like the DMDs. He was hoping it would stop the progression. On Rebif I have had a little progression each year. This has mostly occurred in past 4 to 5 years. He wanted something else to help slow or stop it more.

[Sunshine]

I only stopped because my neuro said to stop, but i didnt ask why. Maybe it was skewing other labs (which it does give false positives) or maybe due to the new dx of Stiff Person Syndrome.

I got pure biotin because the capsules have filler along with the biotin in it and the filler gave me GI problems. I had no side effects on the pure powder You have to order a jewelers scale to measure out the gram for each dose, as I didnt see myself buying empty capsules and filling them.; and a lot of those profiled capsules do not have enough of the biotin in it.

If you want a link on the biotin powder, and scale, let me know, I will locate them hidden somewher in the house. :)

I and so glad you like your new Neuro.

My doc does have me on Lipoic Acid twice a day and said not to stop it.

[agate]

Virginia, the new doctor sounds like a keeper. Easy on the eyes is always good.

I'm sending you a PM.

[Virginia]

Agate, it doesn't hurt, however I am pretty much kidding around about that. I liked him and talking to him. He was easy to talk to. I think I am in shock because this is just not always the case. I had somehow expected him to be a little on the stuffy side. So, I gently made a few small humorous remarks and he seemed to respond. I think he might do some research work.

[Cherie]

My neuro put me on it and told me to start with 100 mg/day then when my body had adjusted to up it to 200, wait a couple of weeks and ultimately go to 300 mg in 3 equally divided doses. I had significant gas, bloating and liquid urgent stools. PLUS...it gave false high readings on my glucose when I had labs done. They were normal with finger stick but venous blood at the same time was over 300. Turns out that biotin has been used for decades in some of the reagents they use in the lab. Given that it messed with my gut and my bloodwork, I went off it. My neuro has partial ownership in a formulating pharmacy that makes up the high dose Biotin capsules and they sell it quite reasonably.

There is a theory that is being currently tested in a couple of clinical trials, that Biotin can slow progression in older adults who have had MS for years. It takes about 8-10 months before the individual sees any positive impact in most of the trials. Not covered by any insurances and the cost is from $30-80/month.

[Virginia]

Thanks Cherie, he told me it would be $80.00 per month. I am going to e-mail him and give it a try. I will go as high as I can and if I can't do 3 a day maybe I can do 2, unless he felt that just 1 would be better for me and my situation. He told me that all my labs other than thyroid are good and that I would just have to come off the biotin for a few days before having that tested. Even on Rebif this long my liver test, and all else have been good. I hate to add the expense, but if I can do it and there is the possibility it will work then I will try to add it on to everything else.

[Sunshine]

Thanks Cherie, he told me it would be $80.00 per month. I am going to e-mail him and give it a try. I will go as high as I can and if I can't do 3 a day maybe I can do 2, unless he felt that just 1 would be better for me and my situation. He told me that all my labs other than thyroid are good and that I would just have to come off the biotin for a few days before having that tested. Even on Rebif this long my liver test, and all else have been good. I hate to add the expense, but if I can do it and there is the possibility it will work then I will try to add it on to everything else.

Do let me know if you cant tolerate the capsules. I will find the link to the pure powder form which did not give me gi, whereas the capsules with filler in them caused me all the GI symptoms like Cherie mentioned. i will dig it up. I think i know where it might be. Think is the operative word here.

[Virginia]

BBS, thanks and I will definitely let you know if I think it will be better. All that measuring is not something I want to have to do, but if I do then I will do it. I have a tremor and at times it would be hard for me to use that little measuring spoon and weigh it and all that. However, I want to try to do all that I can to help myself.

[Cherie]

The pure powder that my doc gave me a link for was sold for formulating pharmacies and it called for 1/64th of a tsp per 100 mg dose and warned of potentially serious side effects if this measurement was not accurate. My Dr's site is Only registered and activated users can see links., Click Here To Register... and it is $29.99 for ninety 100mg capsules and they put no cornstarch or lactose fillers in their caps.

[stillstANNding]

Thank you for that information, Cherie.
ANN

[Cherie]

The bag of powder would fill a 1 year supply of 100mg capsules at 3x/day and only cost $21.00 so was inexpensive. I just did not want the bother and the risk.

[Virginia]

Thanks for the info Cherie. Certainly, with a tremor and having to be so accurate the capsules would be better in my case. I will give his a try, but might come off of them and get yours due to price. If I see him again in six months I could tell him why I changed.

[Sunshine]

The pure powder that my doc gave me a link for was sold for formulating pharmacies and it called for 1/64th of a tsp per 100 mg dose and warned of potentially serious side effects if this measurement was not accurate. My Dr's site is Only registered and activated users can see links., Click Here To Register... and it is $29.99 for ninety 100mg capsules and they put no cornstarch or lactose fillers in their caps.

Good info Cherie!

[Virginia]

BBS this is mainly for you - After reading a lot of FB Biotin site, I have found a number of people who have stiffness with Biotin. This may be the reason your Doctor took you off it. It seems that with SPS that would not be good. They take magnesium to counter the stiffness.

The Biotin capsules I ordered from the Doctor's office were $90.00 for one month. She said it would be a little cheaper if I got a 90 day supply. So, if I can take them I will not stick with getting them there. Too much!

[Sunshine]

Good info Virginia!