Cait....SPMS dxes....Re: Sharon

[Guest guest]

I have been worried about you, Cait, so I am SO glad to hear from you!Cait and all: I think we get scared to death by some of the dxes we are given. When I was dxed with SPMS I felt so sad and down. At that time my legs were hurting so extremely bad at night and after testing I was told the pain was from MS. I asked if it would get better and I was told no. Talk about distraught! Geez, it was bad. At night the pain was so bad I would walk up crying after dreaming about suicide. I was in a terrible state for months and months and the pain would not let up. I really can't remember if that pain eased off before I started LDN or after I started LDN. But it DID ease off and went away completely. After I moved here to the

mountains I improved so much. Now I feel myself slipping back and I am scared to death by that. Anyway... I'm babbling here. I just wanted to say try hard not to think about that dx because it may be right and it may not be right. I'm glad your numbness and prickliness went away. Wonderful!love SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Thu, January 6, 2011 8:21:34 PMSubject: Sharon

I'm so sorry to hear of your numbness especially right after the ON . I'm glad you're on the prednisone and especially back on LDN. But is taking such a high dose so quickly alright? I thought you had to start at 1.5 and build up gradually?

Thank you so much for the card, it really perked me up. I've been AWOL because my left side went all prickly and then numb. I could barely manage the stairs so I stayed at 's til after Christmas. I'm surprised one of us didn't have a stroke <g>. What scared me the most was the diagnosis of spms .. I was afraid the feeling wouldn't come back which it did. Sometimes I really question diagnoses!

Anyway home I went to a dead computer (got a partial fix cause it needs a $200+overhaul and I"d rather get a laptop) and pneumonia of all things. Yes I went to the dr and thank goodness it was viral so I didn't have to take the antibiotics he prescribed. I'm still a bit draggy but for the last 10 days or so I've had the best and longest sleeps I can remember!

Good to be back ... hugs, Cait

started prednisone and other news (LDN)

I started the Prednisone today. I hope by tomorrow I will be seeing a difference. The numbness spread from my legs/feet up to my ribs, lips and pubic area. Of course, I have had numbing in all those places before so I'm not freaked out or anything. Just being cautious and concerned. I talked to my doc today to let her know what is going on. I am also having some mild optic neuritis pain and some mild face pain. I have decided I will go back on LDN. I was in pretty bad same MS-wise before starting LDN and then after being on LDN for a while I came out of the MS-funk. I was never sure it was the LDN and I quit it because I was having oral surgery and pain pills. I just never restarted the LDN. I felt good for a long, long time but then last summer I had two exacerbations. I concluded it was because of the summer heat. Well there isn't any summer heat now! (13.5 below when this started:) So today I dug out my bottle of LDN and I am going to start it again. I hope it works miracles for me. Of course, there is always a chance my improvement years ago had nothing to do with LDN. I am crossing fingers/eyes and other pieces and parts!hugs to each of you

SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.