[carol Oliver]

Hi

I have been getting ivig for several years. As above, I am prescribed Tylenol and Benadryl prior. Also, make sure you are well hydrated, drink as much water as you can the day before and day of. Yes, the i can have some slightly disturbed sleep.

Blessings

Carol

[carol Oliver]

Hi Brian

i have my medicine marijuana card. I’m curious, what is your system that you developed that helps you with lems.  I understand the sativa vs indica application but any other tips ?  Thanks

carol

[carol Oliver]

Hi

thanks for reminding us that it’s very important to have a calm peace within ourselves to help max out positivity    Not just for us lems people but all people

[carol Oliver]

Hi  I’ve been getting ivig at home for about 2 years.  My first 3 infusions were in the hospital setting but it was my insurance that said to set up home infusions because it’s cheaper. I have a great specialty pharmacist and always the same nurse. It’s great infusing at home. Less hassle and more comfortable I would think your insurance company would have no problem. As for your Neuro maybe a persuasive conversation.  Remember your the boss in your healthcare !!!!!  Good luck and feel good every day

[carol Oliver]

Hi

i am currently getting rituximab every 6 months for the last 18 months and my next infusion is in December. I take Firdapse and monthly ivig.  Since starting the rituximab I have seen continuous improvement. I still have some walking disability but most of my dysautomonia symptoms have subsided or reduced immensely   I wish I could say that I’m a Lems patient that can take minimum firdapse and then ride a bike. But I take max dose and still have difficulty. Any improvement is always welcome  I currently have returned to some travels after 3 years of not being able to do much.  I am a fan of rituxan and will continue to get it as long as there’s improvement.  Good luck and feel better everyday. Carol

[carol Oliver]

Hi Caro,

I use Firdapse daily, monthly IVIG and rituximaub 2x per year. All improvements are very slow. I have improved immensely since my first 2 years of diagnosis. I still have lems symptoms but they are not so severe. I can travel now, back to driving, walking and feel better overall. I would also try to get the monthly IVIG. See if it works but give it time, the effects are not immediate, it can take a few months and can or will slowly continue to improve. I am always very slowly improving. It is unfortunate that Firdapse is not available in Argentina. Please let me know if there is anything else I could help with. Carol