denisew

Dense, honestly there is need to apologize. For the last twelve months I have been part of the roller-coaster of emotions my friend Natalie has gone through. I see how it affects her daughters, the 4 year old but mostly the 9 year old, her parent and husband. Nat has been one of my closest friends for many years, I have been continuously reading and researching for over the past 6 months and I can say we are doing OK, she is still walking with the help of a walking frame, breathing is good with less mucus, swallowing is good, speech is slurred but understandable. We’ve tried different things and we feel we have slowed the progression to a crawl. Vitamin D levels is at the top of our list, 6000UI to 10000UI especially if your levels are at 12 and sunlight , Nat tries to get 30 minutes of morning sun every day.
Low iron and ferritin, are your kidney’s OK? Thanks for responding, take care. Terry

I wouldn't be attributing your very low levels of vitamin D to spending to much time indoors, as most if not all with ALS have level around 12 at some stage. Keep at the vitamin D supplements, my friends levels are now just inside normal, her condition has slowed to a crawl and she is still walking. Ask your Professor if he had thought about the active form of vitamin D. Terry.

Sorry Denise, should have mentioned in my reply last night, you may know this already but Parathyroid is different to thyroid. Your Professor may not have tested for PTH if he saw the calcium was normal, not well known but the body lowers Vitamin D to reduce calcium levels. Is there any chance you can ask him if he did and if so what the reading was? again I'm sorry, I don't want to cause any inconvenience but this may be important to you. Regards, Terry

Wow thats low! My friend has the same dry flakey skin, we thought it was because of her low B12. I went to the doctors today with her, for Vitamin D, Calcium & Parathyroid results unfortunatly doctor had to go, she has really upset. Usually low Vitamin D means low calcium, do you know what the Parathyroid hormone(PTH) level was? Sorry for all the questions, I'm following my own theory on this, if you go to my page I've started to put it all down. My friend has a fibroid on her uterise, I believe what it is secreting caused her MND which is similiar to the Parathyroid hormone. Probably lead to nothing, but I have to see it through. Regards, Terry

Hi Denise, from the other side of the country, Question - how low was your Vitanim D? I'm sure they did a calcium reading a the same time, do you know what that was?(range 8.6 to 10.2) my good friend was diagnosed with this horrible disease, we have been able to slow her progression but no answers.
Regards, Terry.

Hi to all, I am Denise, thought to have MS,was ruled out.Specialist ordered MRI,Blood, Spinal Tap, all OK. On the second needle test just said you have MND,asked which one as I like to organise things, I was not frightened about which one it was.Although its tending to be following PLS as I can barely stand, balance has gone on holidays, cannot lift feet, weaker in arms can only lift 2 plates, cramps have left home. Why can I move my legs able to move when I am sitting uncomfortable but can move them.I would be grateful if someone could explain it for me.

I had better say that it all started in lower back and left hip, limping, progressed to the most painful cramps down left leg, next it started on right leg.stiffness and heaviness set in , used walker until I was slower than a snail, am now using wheelchair, tire very easily, will fall asleep at the drop of a hat, even while putting spoon to mouth.
Again thankyou for listening and any advice would be greatly appreciated.