I Finally Have An Answer!
 

I just had my follow-up with my neuro this morning. With the time of at least 2 years between the brain MRI's and my Visual Evoked Potentials, my neuro told me today that he could diagnose me with MS without another lumbar puncture.

He is sending the script for Extavia to the specialty pharmacy. Extavia is the first required drug by my insurance. I have already rounded up 3 people willing to help me with injections, I have tremors and I don't feel confident giving them to myself with my tremors.

I am just happy to know what is going on. Thank you to each of you for letting me hang out and learn from each of you for the last 2 years during my journey to diagnosis. I will still be here, but I feel able to cope.

Hi bddouglas,

I am glad you finally have a correct diagnosis but I am sorry it's MS. I hope all goes well with your injections :hug:

it is always a big relief to have correct answers and be diagnosed for sure.
at least now you can work with your dr on a plan of care. it sounds like you have made good decisions.

i hope the plan goes smoothly for you. i have never heard of that drug. can you tell me something about it?

Another interferon:

http://www.nationalmssociety.org/Tre...ations/Extavia

I've never heard of Extavia either. I hope it works you.

Here is a website I found on this med.....http://www.extavia.com/index.jsp?use...62171813565827

Extavia is an interferon that is injected every other day. The dose begins with 0.25ml then increases by 0.25ml every 2 wks until the completed titrated dose
of 1 ml. It is a subcutaneous injection that is rotated in 24 injection sites on the body. It can cause flu-like symptoms, I will have my IBU on hand. My neuro suggests Aleve but I don't tolerate Aleve well.

I must try Extavia and one other drug before I can try Copaxone, which is the drug my neuro would prefer that I be on. If it will help, I am willing to try it. At least the Extavia does not require refrigeration, it is in powder form and the syringes are filled with sterile mixing solution. I have watched it mixed and measured, very simple. I have friends to help with the actual injections. I have tremors in my hands when I have resistance in them, I would be afraid of hurting myself or breaking a needle off in my body.

CONGO RATS!!!! I know that was a long time coming for you, I'm so happy you have your answer at long last. It's always somewhat surreal to congradulate someone on having MS, but as one who also had a long wait to get a dx I know just how great a relief it is to finally know what is going on with your body and more importantly to know once and for all that it's not all in your head as it can feel like when you're going to the doctor and getting the "head scratches."

I am sure you must be relieved to finally have a diagnosis. Being in limbo is so difficult. I hope that one of DMDs helps you. Has your neuro suggested anything to help with the tremors?

He has not suggested anything yet. Probably because I don't really complain about them. I only really experience the tremors when there is weight or resistance in my hands (my phone, a fork or spoon, etc.). I just use a Bluetooth device and don't go out to eat. I plan to talk to him about it in September when I see him again.