EssentialOilMom
Status: Just beginning to find my new normal on this journey.
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- I just had to share this!Back in April I had started home IVIg infusions ~ I was told that my cost share would be about $1900 ~ which I thought would cover all of the treatments that I had for the year. Then, after that one treatment, my new neuro...
- Hi all - well I'm in the hospital, my second crisis since my first one in January. I was admitted this late afternoon and am spending the night in the ER bc there are no beds in the "step down" area of the neuro floor. I'm not bad enough for the icu...
- I heard from my neurologist today in regards to my over-the-top sweating ~ It is the steroid and he wants me to start tapering off of it starting today. It will of course be a slow taper so I will be dealing with the sweating for awhile, but...
- Hi All!I have had a dx of seizure/epilepsy since childhood. I have partial complex seizures - temporal lobe type. I am now 47 yrs old and take 400mg of Trokendi each day - which if you are not familiar with Trokendi, it is an extended release...
- Hi All, I am going on week 4 of 500mg of CellCept (2x a day) and 60mg of Prednisone (1x a day).I started this routine of medications after stopping IVIg due to bad side effects. At this point, I am seeing no benefits from this treatment. I do take...
- Hi all,I'm in process of moving to a new city and had to find a new neuro. I was a bit nervous as I am sero-negative and that can be difficult to get a neuro to treat you if they don't really "get it". But, today I met with a neuro at a teaching...
- Hi all, Due to a surgical procedure, I am back on lovenox along with my Coumadin- I'm having another procedure next week so planning on being on lovenox until the end of May - ugh! My question is, do any of you ever experience hard, painful bumps...
- Hello all, I do not ha fibro but do have a neuro muscular disease called myasthina Gravis, which means grave muscle weakness. I know that many of you hear are very familiar with pain meds and hoped you could give me some personal experience guidance...
- Friday I am having a Veinogram on my jugular clot, they will then decide at that point what will be done - keep the medi port I have that caused the clot or remove it. Has anyone ever had a Veinogram done and what it is like? Thanks!
- Hello friends, I had my third round of IVIg this past week. It was a 2 day infusion and the first one to do at home. That part was wonderful - as was the whole experience really.I am used to having migraines after my infusions - and this time we...
- Hi friends!Due to my terrible veins, some of you may remember that in mid-February I had a port placed and at the same time my 2nd IGg infusion it was wonderful! Not having to worry about getting and maintaining an IV was pure bliss......until 2...
- Hi all,I was dx with an internal jugular clot on my left side of neck about 3 wks ago. I am taking 130mg of lovinox shots, 2x's a day and Am just starting on Coumadin, 5 mg 1x a day. I will EventuallyWean off the lovinox. So, Thursday morning I woke...
- Hi, I am glad I found this group and am hoping to gain some sort of perspective on the newest condition my body has decided to share with me. :) Last Thursday I woke up and my left arm was hurting and started to swell. Three weeks previous to this,...
- Friends,I am going on my second week of meningitis from the IVIg therapy. I have to say that my strength is so lovely to have back. I did not realize how weak I had really gotten. But I had no idea how debilitating this meningitis would be. Of...
- Friends, I got to come home late Monday night, (10:30pm) and slept so well that night. I struggled with mild migraines throughout my infusions but was able to control it with tylenol or tramadol. Since Tuesday though, I have had a raging migraine. I...