neuro visit

[missy72450]

Just got home from my visit today. had a repeat MRI to see if any new lesions????? I have 2 at present and my LP results I was told over the phone had zero O bnd was postive for an increased albumin and IGG as well as 2 O band but because it was less than 4 it was negative.

Now I have to tell you I have a great Neurologist. She started me on Provigil and neurontin today. Said there is a new drug out there in trials that may be what I need that is showing great promise. She just called it demylenating disease.

Anyway I am sill here, still depressed, but hopefull the provigil will help me feel better every day and the neurontin will help me feel better every night.

Love and prayers

missy

[Sumanadevii]

I am standing right behind Lulu on this issue.  The DMD's can prevent damage to our bodies...Time is not to waste!  He/she may be the kindness person known to man but that doesn't make him/her the best physician for the job.  Please seek a second opinion.

[missy72450]

i meant 2 lesions. Sorry

[missy72450]

Lulu,

You made me laugh and you have no idea how badly I needed that. My dad is activily dying and I have not had alot of laughter this week.

Her reasoning is this; because I only have 3 lesions and 2  O bands she wants to wait. My "official diagnosis" is dyleminating disease. Go figure. She did say that the oral  meds held more promise and less side effects. My argument to her was symptomology, test result, rheumatology rule out ect. should be enough.

Now I found out my cousin has MS as well. I will talk to her about it more.

Love and prayers

Missy

[Lulu54]

Huh?  She doesn't know that copaxone doesn't have depression as a side effect?  That's one of the reasons I chose that for my DMD.  

And the provigil and neurontin may make you feel better in some ways but they are not recommended to treat depression. Provigil will help with energy and stamina.  Neurontin handles neuropathic pain.  

Of course having no energy and having pain can make us depressed, but I have to question her overall logic.  The comment about the DMD's is what casts that huge doubt of her worth in my mind.

The drugs she says she is waiting for are either Gilenya, which is already here.  Or the others i nthe pipeline that are quite a ways off for approval.  That's a poor excuse to delay your treatment now, while problems may be accumulating for you.

To me it sounds like she is coming at this all wrong.  We can like doctors and they can still be wrong.

Jeez, I haven't been mad at a doctor all week!

be well,
Lulu

[missy72450]

LuLu,

I did talk with her about it. She said the depression was from the disease process and we needed to get me feeling better and the provigil and neurontin would do that.

She did not want to do DMDnow as that actually would make me feel worse at present.

Missy

[Lulu54]

Missy, be sure to discuss the depression with this great neuro.  They know that situation too and it can be treated.  

The people on provvigil swear by it - I hope it works for you as well.

Lulu