Cytoxan

[Al]

Hi Kim. Go back one page and look at the Header for this section of the forum. There is some black print with the name progressive muscular atrophy in blue. PMA is also in blue. Click on one of those and it gives an explanation of what PMA is.

 

[David]

Kim, here is a <a href='/definitions/progressive-muscular-atrophy.html'>description of PMA</a> <-- click the link provided.

 

[CIARA1]

thanks

thanks you guys just wanted to know.:-D

kim

 

[lucy]

also diagnosed in 2001

hi,
new here. Did not know a site existed for pma. Have been told that pma is what I have. diagnosed'ed in 2001. legs gone arms weakening. everything else o.k. wanted to say that I was given cytoxan for about 6 months 2 years ago. dr. thought I may have had some type of immune deficiency. didn't help me at all but glad I tried it.
brenda

My husband was also diagnosed in 2001. He has no use of his legs and little with his arms. He also tried something for immune deficincy - gamma globin, steriods, plasma phersis with no success. He does continually get worse but it is gradual. He has off and on had throat and tongue weakness but it usually goes away. Thank God! It always makes you wonder if it is going to go to the full blown als when he complains of those symptoms. He takes minocyclin (antibiotic) twice a day. He believes this helps with his voice weakness? His breathing is still good at 80%. Any ideas we could share to help one another would be nice.

 

[lucy]

pma

hi,
new here. Did not know a site existed for pma. Have been told that pma is what I have. diagnosed'ed in 2001. legs gone arms weakening. everything else o.k. wanted to say that I was given cytoxan for about 6 months 2 years ago. dr. thought I may have had some type of immune deficiency. didn't help me at all but glad I tried it.
brenda

My husband was also diagnosed in 2001. He has about no use of his arms and none in his legs. Every once in awhile he experiences what he calls weakness in his throat and sounds hoarse. This has been going off and on since about the beginning of his diagnosis. He has been on the antibiotic Minocycline for 4 years now. He doesn't know how but thinks this helps with his throat. He also tried some different things for immune deficiency but it did nothing to help. Like you, he is glad that he tried. He was only 34 years old when this whole nightmare started for him. Our motto is "one day at a time". We can always be thankful that he continues to have no speech, breathing, or swallowing problems.

 

[manfred]

cytoxan

Hi al, I did look up cytoxan (you can find a definition in wikipedia),apparently it's a drug that works by slowing or stopping cell growth.Logically I can't see this as being useful for for a condition that is actually destroying cells.Manfred

 

[liz]

OK, so which Manfred is posting now? We need a code word or something.

PS - sorry if it is the "real" Manfred. This is whacky. If your son "came out" as a kid, I wouldn't care - just like to know when I'm talking to minors.

Liz

 

[CindyM]

I'm lost, Liz. Can't follow this thread very well, nor your last post. Can somebody fill me in? Cindy

 

[liz]

Cindy -

Manfred's son posted earlier on another thread about Eric Edney (guaranteed controversy) using Manfred's account info then Manfred came back from somewhere (Toronto?) and was upset that someone was scamming under his name until he (Manfred) found out it was his son (not scamming, just asking questions) and apologized for being upset. There - that should clear things up.

Liz

 

[CindyM]

How old is Manfred's son and can he get his own screen name? I am a person who has toruble remembering what she had for supper so confusing situations leave me, well-confused!:grin:

 

[liz]

Manfred -

Can you please help Cindy out here?

I hope my kids aren't stirring up stuff like this where ever they go on the net. And if they are, my next hope is that I don't find out about it. :smile:

Ignorance is bliss,

Liz

PS - to Manfred's kid - we're OK talking to you (if you are really still there) but want to know if it is you not your dad).

PPS - I can't even remember now who in this family is ill and with what.?

 

[Al]

Thanks Manfred. I did six months on it so know about it now.
AL.

 

[manfred]

confusion

Hi guys,really sorry about the confusion..I should have checked closer before reacting ...then I would have known that what I thought happened -couldn't.I sort of broke my own rule ...never react on impulse!Just to sor of explain what happened...every year we celebrate my daughters birthday,either at her place or ours,so everyone in the familly can be together.We are all very close and my children are especially "tight"...if you deal with one you deal with all three...if one is feeling out of sorts they all feel bad and they always stick together.This year our friends in toronto( they too are more like familly and are very close) decided to invite us all to their place to celebrate my daughters b-day.Unfortunately due to prior engagements my son could not accompany us.( My son by the way is 27yrs old ) I quess being alone at home on the 18th of may (my daughters b-day) and having concerns about my daughters condition(as well as not being able to be with us )he was trying to find some answers to his queries (even though I keep him abrest of what I find and /or think about what I find on the net )He wasn't into my favourite folder but was rather searching the A.L.S./M.N.D. forums ..when he hit the pma site I quess he didn't realise that you had to register to post queries..so when he tried ,having been on my computer..and as I was registered his post automatically went through on my name and that is how he got there .....given the date and the dialogue I should have realised right away that it was probably him..but my mind was asleep!Whe it finally" clicked " I asked him about it and sure enough I had my answer.I told him if he wants to get on line to register(talking to other people who are either directly or indirectly affected my m.n.d.'s does help to get through some nervous moments.)As for who is ill in this famillt...my daughter has m.n.d.....after being misdiagnosed several times..she was finally told that she has p.m.a... she's 36yrs...she started showing symptoms at 31yrs. of age.My wife and son suspect that she's had it longer but officially its about 5yrs.And last,my oldest son is 34yrs. of age...My wife ..I quess I shouldn't say (in case she ever gets on line) I am 62yrs. in October..so to me my children are still "kids"..but they are adults who are very concerned over their sisters well being.. it was an honest mistake..kind of lame because I should have been more observant before reacting..hope this sort of clears up the mystery.Manfred

 

[CindyM]

Great story about a loving and kind-hearted family, Manfred. THey sound like great "kids" and you and your wife are blessed! Hope more of the family decides to join us in order to continue their support for your daughter! Cindy

 

[liz]

If all of the Manfreds are adults, then I think we're all set.

Sorry to hear about your daughter's condition.

Liz