A Warm Hello to All!
Again, I'd like to express my appreciation for all of the warm welcomes, the inquiries, the information shared, etc. I am looking forward to spending time on learning some new information and also in refreshing my memory on other information!
This is quite a site, all put together and held together by a lot of "teamwork" it seems. This makes for a very strong site.
It's extremely heartening to me to be blessed with access to this group.
I only hope I can contribute, in return, in a meaningful way... someday.
Update re: yesterday and Conversations with Neurology
I had decided to write a little update, as many were very helpful with input yesterday, while I was trying to gain some direction from my neuro's office.
His nurse and I had been in touch, three different times since last night.
BY this a.m., it was more clear that I am also dealing with a virus of some sort. This is exacerbating the exacerbation.
They'd told me they want me to remain at home, trying to recover from the virus. They had told me I can increase pain meds, if needed. They'd additionally told me to use a cane at home, if I need help with walking. Once I am well enough to leave home, to use a wheelchair, if I need to, for longer walking tasks (for instance, if I were to go out to the mall or out for something else and the walk is too much).
They will also approve any other method I might need for ambulatory help.(A generlize blanket statement, not sue the nurse can deliver on that one! Lol!) (???) This is okay, I guess; yet, I want them to realize that I have never had to use a wheelchair before and would really like to know what is behind maybe needing one this time?
They'd said they don't want me "falling."
I haven't had a history of falling? Standard warning for bilateral leg weakness, I guess.
(Additionally, I don't have a wheelchair..so I guess I think about a rental until we know what's going on?)
They had instructed me to cancel my evoked potentials scheduled for tomorrow, as I am too ill right now. They have rescheduled them for May 2nd! (that is the next available appt. for that test.) I canonot get EMG until May 23.
They had added the neurologist cannot see me again until June 10th anyway.
I am supposed to keep a close eye on all of this...the symptoms, weakness, etc. If I have any further major changes, I am to call again right away. (I'd just done that.)
This system is so overwhelmed!
I think most are?
I do not have it in me to "fight" with them. I am far too tired and in too much pain. I am more comfortable with my breathing today, for which I am thankful.
I will keep a very close eye on things and will not hesitate to call an ambulance, go to the ER with family, whatever needs to be done... in whatever manner it needs to be done...whenever it needs to be done.
It seems absurd that everyone (or likely the majority) have to wait this long to get some help from the actual doctors? The tests we are waiting on are not anything super extraordinary.
I cannot have my labs ? I was told I cannnot know my labwork results until I see the doctor. The things like the serum and urine immunofixation, etc.??? I get to know these in June? (Seems odd.)
I'd had my first appt. with the neurologist for this episode on March 18th. (After an argument from my primary care's office, as neurology's office had wanted the initial appointment to occur in June! Lol!) Although I now do not have my initial appt. in June and will be meeting with some test results in June, it is still disheartening; yet, I know I am not alone in dealing with this.
It's just that all of my other docs are holding out to see what neurology has to say. (My rheumatologist, my primary care, physical therapy efforts, etc.)
I guess, on one hand, I can count myself pretty lucky that I can see a neurologist and I can have the testing, etc. It just gets so frustrating...especially when everyone is deferring to one specialist and...everything is on hold.
So..we will see what happens over the next few days.
(I do know that the infection rate of MRSE and VRE, and maybe some other things are high right now in this area. I am not sure I have used the exaclty correct acronyms for those. I am having trouble thinking, due to the level of fatigue, etc. My docs are always very cognizant of these types of infections in the hospital and constantly tell me to stay away from the hospital in order to stay as well as possible.)
[B]mrsd[/B
], thank you for all of the information you have shared! It is very important information and I am grateful you had taken the time to share so much!
I have acetyl-l-carnitine, CoQ10, methycoalamin 1000mcg., OptiZinc (monomethionate15 mg.), N-acetyl-L-Cysteine, Alpha Lipoic Acid and "Advanced Ferrochel" (ferrous bis-gylcinate chelate 27 mg.) in the house, along with other vites and supplements.
I had recalled some of the nutrients I had used before, yet I could not recall the amounts. I need to look for my books by John Senneff. I had used those before and actually did quite well.
Maybe there is updated information elsewhere on the supplements and the dosages to take?
I had read some of Roses' website today because my recent B12 was 415. My recent ferritin was only 20. (Nice site, Rose!)
My doc had called 415 normal. He had advised me to take ferrous sulfate twice daily for 30 days to bring up ferritin level. Yet, I had found the "Advanced Ferrochel, " which is supposed to be much more bioavailable and more gentle on the stomach. (Source Naturals).
I need to get my comprehensive plan together and stick with it, in hopes of healing nerves again!
I have forgotten lost of info, so I will have lots of studying to do again!
Thank you for all you have shared.
mrsd, You have been an angel to many for many years.
I do recall reading some of your posts when you were on the original braintalk forum as MrsDoubtfyre...wasn't that the spelling? (I am trying to recall.)
I had never belonged ot the forums, yet, I had read them now and then!
(Didn't you also design a logo or something for them? Or do I have you confused with someone else?) I do know you have been a tremendous help to so many for so very long! You have a heart of gold!
Thanks again to all!
I hope everyne get a good night of peaceful rest.