Gina has been asking:
"does antone have the sensation of cold wet in your lower extremities? and it's never wet, yet it has that sensation...so I wear knee socks...and even gloves because my hands and finger's are affected"
This is also my sensation. But i cannot explain where the feeling comes from that my feet are wet..?
Does anyone have an explanation for that?
Kind regards,
Akita
There are times when that happens to me. It feels as if I spilled some water on my legs. I haven't paid too much attention to it, but it does happen. At least I know there is some one out there that has it.
So we are three of us, now..
Another problem which i have got,is my intolerance to heat, starting in spring, i ve got a sort of hyperthermia which has returned every summer since 2011. Two contrary conditions, one source?
Dear Israel i have read your personal presentation and suppose that we could probably share one or the other condition. In my actual view my ataxia is caused by different components: genetical, immunological and infections. After an acute myeloid leukemia in 2007 i have been studying medicine privately, by reading my patients records and many study reports and review in medical journals.
Hopefully that we will be able to support each other in the frame of this group, for an even better diagnosis and treatment, and rehabilitation.
Kind regards,
Akita
DEAR ISRAEL...JUST READ THIS ABOUT THE WET SENSATION, OF THE LOWER EXTREMITIES...AND I DO UNDERSTAND WHAT YOU EXPERIENCE,,,MY DR. TOLD ME, IT IS NEURAPATHY.......NOT SURE THOUGH, ALTHOUGH I DO BELIEVE IT IS SOMETHING TO DO WITH THE ELECTRO MAGNETIC NERVES IN OUR BODY, AND THE WAY OUR BRAIN RESPONDS TO THIS DELEMMA...IT IS A VERY STINGING BURNING PAINFUL,WET FEELING THOUGH THERE IS NO WATER...HOW DO YOU DEAL WITH THIS? WHAT I HAVE STARTED MYSELF ON IS LIQUID B12 COMPLEX AND AT NIGHT 2MG OF VALLIUM..DR. PRESCRIBED..ONLY I TAKE ONE HALF..OF A 2MG...YET SOMETIMES, I DO TAKE 2MG...IT RELAXES MY MUSCLES...HOPE YOU FEEL BETTER... ALSO ,.THIS BALANCE CERREBELUM ATAXI MAKES ME WONDER, IF THERE.S A WHOLE UNIVERSE OF PEOPLE WITH THE DIS EASE.....SHALOM!!
Israel said:
There are times when that happens to me. It feels as if I spilled some water on my legs. I haven't paid too much attention to it, but it does happen. At least I know there is some one out there that has it.
Dear Tina,
did you never try magnesium supplementation? For me two different brands of magnesium are helpful in reducing my symptoms, but not the others. My magnesium level is in order, but i need magnesium nevertheless for to manage burning and cramping. These are Magnesium Verla Filmtabletten and Magnosolv water soluble tabs. Magnesium Verla Filmtabletten are only one sort of the plentitude of products in this field, but interestingly this helps. It has been not regularly payed by our health insurance, but - as i heard - a patient went to court to get this payed, and now also the other patients after allogeneic stem cell transplantation who have got such "neuropathy" and cramping get this by the insurance.
I wonder if there would not occur many false diagnosis, with "hypomagnesiaemia". Its not really a hypomagnesiaemia, when your magnesium counts are in the range. It might be an other disease whose symptoms could be alleviated/managed by this sort of magnesium supplement.. This is not extremely expensive, but as the costs of medication add to one another, i am happy not to have to pay for it by my own.
It was told to me by a neurologist also by the doctors that i would have got a neuropathy with a sensory component, but later then i got a new blood record from an immunological ambulance in which it is said, that my respective blood count would not show neuropathy (but something else instead... will find the testing results later, cause actually have not got the 100 % order in my records, together with the plenty of study reports and reviews its almost too much paper to manage...)
Have nice day!
Kind regards, Akita
I was going to eventually do my own post, but I'll use this one. Forgive me if I am imposing. At first I was diagnosed with Parkinsonism, then Par. plus Cerebellar Ataxia. My neuro. said I have this and sent me on my merry way. My common symptoms are: Tremors inside (like the nerves), and outside. Dizzy most all the time. Brain fog. Difficulty with memory. Sensitive skin, as if I had shingles, but not all the time. The list goes on. I haven't fallen thus far. Thank God. My family doesn't understand and I don't get much support. I am unable to drive.
Stress doesn't help. I can sleep eight to eleven hours, and several hours after getting up in the morning, I am ready for a nap. My attention span isn't good. When I do a task, it is as if I had been drinking. I am learning to work through a task, but I can only push so far. The room I live in looks as if the city is going to condem it. lol It's ok. I'll clean it when I am good and ready.
I have been going to physical therapy for two months now to strengthen my muscles. I can feel a big difference already. However, I can go through my exercises but can have difficulty walking several blocks from home. My muscles feel weak and it can be somewhat painful to walk. My PT says that will go away as I build my muscles up, but I feel there is more to it than that. It just doesn't feel right. I do have so-called good days.
I have been reading the difficulties that others have and go through, and feel fortunate regarading where I am regarding my symptoms.
I live in a small town, so there aren't any support groups. Several months ago I met a distant cousin who has health issues. He drives, and we will take short trips this summer and enjoy the outside. I am thankful for having met him.
I have most likely said too much, and could say more, but I may remember them later. That really doesn't matter, though.
Thanks, all, for listening.
Israel.
I don’t quiet as much as I used to since my Yoga instructor told me it was lack of oxygen and when it does happen I need to move more to get oxygen flowing more. Hope that helps some.
I read you post with great interest, and understand exactly what you mean....would you please get this little book, from the library or other source...., "touch of life", written by an osteopath, that really makes sense to me...I am starting the very simple stretches, he wrote in the book, and I know, their is a profound affect with this...everything is energy!!! everything!...our life force has gotten blocked somehow...I cannot tell you how important the flow of the life force is, it is worth giving it a try....I too, have cerebellum ataxia, and the wet sensation, etc....I feel bad you had to go thru so much...and I hope it gives you some consolation, and comfort, with my message, that I, and many like minded souls do care, and do understand, on this blessed site, we are not alone in this dilemma....if you do get a chance to check out this valuable little book, you will understand what I am trying to convey...and it is good to be connected...and know we are not isolated, with this, dis-ease....blessings ...GINA
Israel said:
I was going to eventually do my own post, but I'll use this one. Forgive me if I am imposing. At first I was diagnosed with Parkinsonism, then Par. plus Cerebellar Ataxia. My neuro. said I have this and sent me on my merry way. My common symptoms are: Tremors inside (like the nerves), and outside. Dizzy most all the time. Brain fog. Difficulty with memory. Sensitive skin, as if I had shingles, but not all the time. The list goes on. I haven't fallen thus far. Thank God. My family doesn't understand and I don't get much support. I am unable to drive.
Stress doesn't help. I can sleep eight to eleven hours, and several hours after getting up in the morning, I am ready for a nap. My attention span isn't good. When I do a task, it is as if I had been drinking. I am learning to work through a task, but I can only push so far. The room I live in looks as if the city is going to condem it. lol It's ok. I'll clean it when I am good and ready.
I have been going to physical therapy for two months now to strengthen my muscles. I can feel a big difference already. However, I can go through my exercises but can have difficulty walking several blocks from home. My muscles feel weak and it can be somewhat painful to walk. My PT says that will go away as I build my muscles up, but I feel there is more to it than that. It just doesn't feel right. I do have so-called good days.
I have been reading the difficulties that others have and go through, and feel fortunate regarading where I am regarding my symptoms.
I live in a small town, so there aren't any support groups. Several months ago I met a distant cousin who has health issues. He drives, and we will take short trips this summer and enjoy the outside. I am thankful for having met him.
I have most likely said too much, and could say more, but I may remember them later. That really doesn't matter, though.
Thanks, all, for listening.
Israel.
Thanks for your replies. You all make sense. Not having enough oxygen to the brain certainly makes sense. Also, I'll either borrow the book. Better yet, I may order the book, "Touch of Life." So far today, I am having a normal good day. Thanks. Israel.
GREAT!I'M JUST PRACTICING MYSELF ....IN THE LITTLE BOOK, THE DR. HAS A SERIES OF 9 VERY SIMPLE YET PROFOUND STRETCHES, TO STIMULATE THE LIFE FORCE......PLEASE IF YOU WILL, AND YOU ARE ABLE TO GET THE BOOK, LET ME KNOW YOUR VEIWS ON THIS...I WISH YOU ALL OF THE BEST...BLESSINGS FROM GINA....NAMA"STE
I am going to check into the book when I get done here. Also, I am going to try the Magnesium. This has/is an interesting thread for me.
Israel
gina said:
GREAT!I'M JUST PRACTICING MYSELF ....IN THE LITTLE BOOK, THE DR. HAS A SERIES OF 9 VERY SIMPLE YET PROFOUND STRETCHES, TO STIMULATE THE LIFE FORCE......PLEASE IF YOU WILL, AND YOU ARE ABLE TO GET THE BOOK, LET ME KNOW YOUR VEIWS ON THIS...I WISH YOU ALL OF THE BEST...BLESSINGS FROM GINA....NAMA"STE
Israel... thank you for your message...if you sometimes get discouraged don't feel you are alone...I get that way also...so I'm trying these stretches at my own pace...I know you can understand this...it's all good Israel, and I am so happy for your message...there is a supplement called calm...it's a natural magnesium source...have not checked it out yet, only it's a good source of magnesium I might try also....be back in a bit.....gina
Israel said:
I am going to check into the book when I get done here. Also, I am going to try the Magnesium. This has/is an interesting thread for me.
Israel
gina said:GREAT!I'M JUST PRACTICING MYSELF ....IN THE LITTLE BOOK, THE DR. HAS A SERIES OF 9 VERY SIMPLE YET PROFOUND STRETCHES, TO STIMULATE THE LIFE FORCE......PLEASE IF YOU WILL, AND YOU ARE ABLE TO GET THE BOOK, LET ME KNOW YOUR VEIWS ON THIS...I WISH YOU ALL OF THE BEST...BLESSINGS FROM GINA....NAMA"STE
Dear Tina,
i have tried to find the book on amazon, but there are several with a similar title.
Who is the author!
Thank you very much..
Akita
Hi Israel,
although magnesium is very precious and necessary for me, it might cause side effects. Also there are existing different forms of magnesium, and also in the case magnesium would principally helpful for you, you might buy the wrong one, might take the wrong dosage etc. In combination with other drugs you have to take magnesium could perhaps not beneficiary for you. A man in a German speaking forum has complained that he would have to go to the toilet very often because of diarrhea because of a magnesium supplementation, and there are also other unconfortable side effects possible. If possible i would consult a doctor for such adds. I want to undeline that i actually do not have an overt magnesium deficiency, but when i stop taking magnesium,my legs start to cramp and hurt, and also the hands.. And so i go on with the supplementation, once found out to be helpful for me.
Another thing would be if you would be a person who likes to do self-experiments. I have been forced to some, trying to optimize my therapies: Do i need more or less magnesium? So i taper it a little, and then i experience usually negative effects. But in the same way i found out, that i would not need a medical immunosuppression for immunological reasons ((after stem cell transplantation) any more. The med is for immunosuppression, but also useful for symptom management of some fungal infection, and enhances the effect of some other meds in this field. By my additional therapy with Azithromycin - together with the other meds i have got, mainly Wellvone/Atovaquon, a lot of my symptoms have improved and i could stop with the medical immunosuppression (Prograf/Tacrolimus). This has been at the perhaps 50th attempt to taper this within the last 5 1/2 years!,and now finally successful. There remains the problem that apparently my chronic fungal (and protozoic/parasital) infections which i seem to have since my childhood, but have been deteriorating after the stem cell transplantation (by relapse, new infections, affection of more organs) had no "treatment" now, and that i have to manage this. Partly i know my best meds for that, but as i have found this by my own, and seemingly there is no doctor for me in Austria paid by my insurance to treat me for that, i have to go on with private experiencing - by natural products and medicine.. Its alway a risk to consult a doctor privately,because it could be - very likely- that he/she would not help, - and then the money is all lost... Maybe you and others know about such problems..
Wishing you a good day and a better health!
Akita
DEAR ISRAEL...I MADE A MISTAKE ON THE LAST NAME OF THE AUTHOR IN THE LITTLE BOOK, "TOUCH OF LIFE"...HIS NAME IS, DR. ROBERT FULFORD...HAVE A GOOD DAY..NAMA'STE....GINA
gina said:
I read you post with great interest, and understand exactly what you mean....would you please get this little book, from the library or other source...., "touch of life", written by an osteopath, that really makes sense to me...I am starting the very simple stretches, he wrote in the book, and I know, their is a profound affect with this...everything is energy!!! everything!...our life force has gotten blocked somehow...I cannot tell you how important the flow of the life force is, it is worth giving it a try....I too, have cerebellum ataxia, and the wet sensation, etc....I feel bad you had to go thru so much...and I hope it gives you some consolation, and comfort, with my message, that I, and many like minded souls do care, and do understand, on this blessed site, we are not alone in this dilemma....if you do get a chance to check out this valuable little book, you will understand what I am trying to convey...and it is good to be connected...and know we are not isolated, with this, dis-ease....blessings ...GINA
Israel said:I was going to eventually do my own post, but I'll use this one. Forgive me if I am imposing. At first I was diagnosed with Parkinsonism, then Par. plus Cerebellar Ataxia. My neuro. said I have this and sent me on my merry way. My common symptoms are: Tremors inside (like the nerves), and outside. Dizzy most all the time. Brain fog. Difficulty with memory. Sensitive skin, as if I had shingles, but not all the time. The list goes on. I haven't fallen thus far. Thank God. My family doesn't understand and I don't get much support. I am unable to drive.
Stress doesn't help. I can sleep eight to eleven hours, and several hours after getting up in the morning, I am ready for a nap. My attention span isn't good. When I do a task, it is as if I had been drinking. I am learning to work through a task, but I can only push so far. The room I live in looks as if the city is going to condem it. lol It's ok. I'll clean it when I am good and ready.
I have been going to physical therapy for two months now to strengthen my muscles. I can feel a big difference already. However, I can go through my exercises but can have difficulty walking several blocks from home. My muscles feel weak and it can be somewhat painful to walk. My PT says that will go away as I build my muscles up, but I feel there is more to it than that. It just doesn't feel right. I do have so-called good days.
I have been reading the difficulties that others have and go through, and feel fortunate regarading where I am regarding my symptoms.
I live in a small town, so there aren't any support groups. Several months ago I met a distant cousin who has health issues. He drives, and we will take short trips this summer and enjoy the outside. I am thankful for having met him.
I have most likely said too much, and could say more, but I may remember them later. That really doesn't matter, though.
Thanks, all, for listening.
Israel.
Also, I haven't been able to find the book.. It appears that it would be of a great hellp.
Israel
Here you are an exemplary for $ 1,00 and $ 3,50 shipping to the USA (for Austria this is much more expensive).
http://www.biblio.com/book/dr-fulfords-touch-life-healing-power/d/708564744
I have got so many books.. but anyway it would be interesting to get the opportunity to discuss with somebody about the same book.
Kind regards, Akita
Israel said:the book is written by dr Robert fulford"touch of life" someone stole it out of the local library...it is a very good book...try barnes and noble, I will try to see where I can find it also....amazon... so someone must have that book..i'll search and try to find out where it is...and where you can purchase it for a cheap price.....gina
Also, I haven't been able to find the book.. It appears that it would be of a great hellp.
Israel