Maybe it’s permanent. Grounding that is.

Aveeno, Cetaphil and Eucerin are fragrance free....also lanolin free. All recommended by dermatologists. I’m allergic to lanolin, hence no wool unless I’ve got a cotton shirt under the wool sweater.
 
Nate, as you're more than aware, this is a tough hand to be dealt. But your attitude is stellar and your sense of humor will help immensely. Please know that you, and Karen (it's tough for her too) are in my prayers even though we've never physically met.

John
 
denverpilot said:
Appreciate the kind words, all. Means a lot.

.....Guy is single, is afflicted with this disorder. Attempts to apply for SSDI. Denied. Loses job, and home. Attempts to appeal. Does it in the wrong jurisdiction unknowingly. Judge says go to the right place. Statute of limitations expired in the meantime.

The case is whether or not the misguided attempt by someone broke without an attorney should have counted toward a reset of the time limit.

Initial case was in 2005. Very little was known about the various cousins to MS then and still to this day none of them are in the SSDI “blue book”. SS spent way more fighting this guy than just paying him. If he wins, they really spent their time and money poorly because the precedent change is massive.

Anyway. Thompson v Saul....
Click to expand...
Sigh. Get good advice.
Tough spot, Nate. Hang in there. If there is any progression on your current med, TELL THE DOC YOU NEED TO CHANGE MEDS (and oh, man these meds are NOT CHEAP). But, sometimes, the recoveries can be...remarkable.
 
Nate is Frankenstein and Karen is a mutant (I still talk about her in my Genetics class). Sounds like a sitcom from hell. Hang in there.
 
azure said:
???
:yikes:
Click to expand...
When I teach about meiosis and sex chromosomes I do have to talk about when those chromosomes go wrong. One of the diseases you can get from meiotic nondisjunction is called Turner syndrome. As it turns out quite a few cases of Turners happen during embryonic mitotic nondisjunction. Syndromic folks get some of the symptoms but not all. I always try and bring some personal experience into my class, so I talk a bit about her (thought I give no names) and how her dysfunction presented itself.

She and Nate are both good people, and I like both of them quite a bit. I feel very badly for Nate, and am hoping for recovery.
 
Thanks for the update Nate! I wish it was a little more positive but I'm thankful its not more negative.

My friend here in Lincoln is still doing about the same as you, though she has been rowing this boat quite a bit longer. She did get on SSDI but used a lawyer the first time around, and she had undeniable proof though so many office/ER visits that she is disabled.
 
bbchien said:
Sigh. Get good advice.
Tough spot, Nate. Hang in there. If there is any progression on your current med, TELL THE DOC YOU NEED TO CHANGE MEDS (and oh, man these meds are NOT CHEAP). But, sometimes, the recoveries can be...remarkable.
Click to expand...

Appointment requested and awaiting the usual slowness of that, and the PT is planning to send over a full update to the neuro before appointment day.

Thanks Doc.
 
steingar said:
When I teach about meiosis and sex chromosomes I do have to talk about when those chromosomes go wrong. One of the diseases you can get from meiotic nondisjunction is called Turner syndrome. As it turns out quite a few cases of Turners happen during embryonic mitotic nondisjunction. Syndromic folks get some of the symptoms but not all. I always try and bring some personal experience into my class, so I talk a bit about her (thought I give no names) and how her dysfunction presented itself.

She and Nate are both good people, and I like both of them quite a bit. I feel very badly for Nate, and am hoping for recovery.
Click to expand...
Of course. I was just ribbing at you for talking about someone specific to your students. I realized you wouldn't have mentioned her name, or your connection with her.
 
What to say that'll be helpful, inspiring, and witty? I have nothing.

I do have positive energy that I can send. Yes, I believe in "that stuff". I hope on those days when it seems the darkest, perhaps you'll feel something that gives you the ability to take those last steps in PT, that allows you to sleep soundly and wake up rested, a silent encouragement which gives you strength to carry on.

This is my contribution to the love and care which many others have already expressed. You are special, and the feelings offered by all of us are genuine. Keep fighting.
 
Heartfelt thanks for the kind words all. I think I mentioned I see the Doc again on the 30th. Just trying to save up some energy this weekend for the holiday week and drives and stuff... mellow in prep for what will probably be a tough week.

It’s worth burning all the gas in the tank for family stuff. Most weeks I try to schedule around such that there’s a down day somewhere to recover, but that’ll probably be Thursday this week... ;)
 
Nate, I am really sorry to hear about what you are going through but like others I am impressed by your positive attitude. I have seen that make such a difference in others dealing with medical issues and I am sure it will for you as well.

I’m sending good vibes/prayers for the best for you and Karen!

JJ
 
Sorry to hear about what you're going through. I'll echo what others have said, don't really know what to say but what I will say is impressed by your attitude. If I were in your shoes I would likely be one angry SOB and my posts would be a lot of ****ing and moaning. Keep fighting the good fight.
 
Interesting that you have problems when it's too cold, Nate. SIL with MS has problems with too much heat. Guess it's person-by-person.

Anyway, wishes for a quick recovery. And a Christmas miracle wouldn't hurt, either. Merry Christmas and Happy Holidays.
 
Have you considered HSCT? You can get it done in Mexico or Russia for $50K or so. In most cases, the MS goes away, and if you are young enough and the brain damage is not extensive, you may be able to fully recover.
 
MountainDude said:
Have you considered HSCT? You can get it done in Mexico or Russia for $50K or so. In most cases, the MS goes away, and if you are young enough and the brain damage is not extensive, you may be able to fully recover.
Click to expand...
Forgive me if I'm skeptical; despite the great promise [and premise] no magic bullets have been found.
 
Kenny Phillips said:
Forgive me if I'm skeptical; despite the great promise [and premise] no magic bullets have been found.
Click to expand...
I too am skeptical, but HSCT is new and just like with the FAA, or maybe even worse, the FDA is painfully slow approving new treatments. HSCT is a form of stem cell therapy and can be incredibly effective for certain things.

This therapy seems to be safe and effective and Medicare even covers part of the cost for certain diseases. Unfortunately, MS is not one of the ones covered. If Nate ( @denverpilot ) is interested, I would like to see him pursue it. I would be more than happy to kick in an AMU or so to help, and I'm sure others would too. Perhaps a gofundme, or similar could be created. Or maybe just a POA-fundme could be created for Nate.
 
Marrow transplants have been used for quite a few years to treat certain Leukemias, so the procedure is well established and safe. What I've read about the MS treatment makes no sense to me. Normally marrow stem cells are eradicated with radiation or chemotherapeutic agents, and new stem cells free of cancer are introduced from a compatible donor. What I've read about this for MS is they use the patient's own stem cells, which are amplified by in vitro culture and engrafted after the in vivo stem cell ablation. The problem (as I see it) is the patient's own stem cells are the ones that have gone wrong, attacking the body. How is a period of in vitro culture supposed to change that?

The one big proviso I can give is MS is still very mysterious. Why those cells go wrong in the first place is unclear, so perhaps a little vacation is all they need.
 
The other thing I have read is that, like other marrow transplants for leukemia, HSCT has a significant mortality rate, something like 1.3%. I believe it is only recommended as a last resort, after several different immunotherapy drugs have failed to achieve lasting remission.
 
azure said:
The other thing I have read is that, like other marrow transplants for leukemia, HSCT has a significant mortality rate, something like 1.3%. I believe it is only recommended as a last resort, after several different immunotherapy drugs have failed to achieve lasting remission.
Click to expand...

This.

We have someone in one of the groups undergoing it or something similar. She qualifies under multiple disorders. Her body is a complete train wreck.

It’ll be amazing if they can even tell what’s just symptom changes from all the disorders interacting or something positive from the treatment.

But the really sad posts (these two are within the last couple of weeks) are the stuff like this...

“My 3 year old was just diagnosed...”

Or...

“Does anybody have any advice for me, our doctors want to implant a baclofen pump in our seven year old...”

Gah. I’m doing great compared to that.

Horrifying. Can’t even imagine being those parents.
 
Nate,
I know you will do your research and make a rational, logical decision.

Just know that many of us are eager to help with more than prayers and encouragement. If there is anything we can actively do to help, please let us know.
 
I just think an exograft would be superior to an allograft. Nuke the bastards from orbit. Only way to be certain.
 
steingar said:
Marrow transplants have been used for quite a few years to treat certain Leukemias, so the procedure is well established and safe. What I've read about the MS treatment makes no sense to me. Normally marrow stem cells are eradicated with radiation or chemotherapeutic agents, and new stem cells free of cancer are introduced from a compatible donor. What I've read about this for MS is they use the patient's own stem cells, which are amplified by in vitro culture and engrafted after the in vivo stem cell ablation. The problem (as I see it) is the patient's own stem cells are the ones that have gone wrong, attacking the body. How is a period of in vitro culture supposed to change that?

The one big proviso I can give is MS is still very mysterious. Why those cells go wrong in the first place is unclear, so perhaps a little vacation is all they need.
Click to expand...

MS is likely caused by specific B/T cells that produce autoimmune responses, not the stem cells. The autoimmune B/T cells evolved from the stem cells via VDJ recombinations. When the immune system is wiped, those MS-causing B/T cells are killed, and the autologous stem cells can re-create the immune system.

The large study recently published in JAMA by the Mexican HSCT group shows very low death rate (I think 1/800, but not sure) and very high efficacy. This is the only known cure, and if done early enough, it allows people's bodies to heal completely.
 
This is obviously a very personal and costly decision, but if it were me or a close family member, we would do this asap.
 
I am perpetually amazed at the level of knowledge and out reach on here. Also the layman translations are very helpful. Thanks @steingar and @MountainDude for writing at my 3rd grade level. :)

Tim
 
JOhnH said:
I too am skeptical, but HSCT is new and just like with the FAA, or maybe even worse, the FDA is painfully slow approving new treatments. HSCT is a form of stem cell therapy and can be incredibly effective for certain things.

This therapy seems to be safe and effective and Medicare even covers part of the cost for certain diseases. Unfortunately, MS is not one of the ones covered. If Nate ( @denverpilot ) is interested, I would like to see him pursue it. I would be more than happy to kick in an AMU or so to help, and I'm sure others would too. Perhaps a gofundme, or similar could be created. Or maybe just a POA-fundme could be created for Nate.
Click to expand...
SIL tried it for her MS. Big waste of money. No results.

Others may have different results.
 
Minor update for y’all. Expected stuff.

Neurologist agrees with @bbchin ‘s concern that symptoms haven’t stabilized.

I get to ride the MRI tube again. Brain and neck. Looking for changes.

I’m going to check and see if they sell season passes. LOL.

She was honest that she doesn’t like the other MS modifying drug options over the one I’m on, but said if we’re seeing changes we have to try something different.

And honest that changes seen or not ... the right side function dropping slowly is not great.
 
denverpilot said:
Minor update for y’all. Expected stuff.

Neurologist agrees with @bbchin ‘s concern that symptoms haven’t stabilized.

I get to ride the MRI tube again. Brain and neck. Looking for changes.

I’m going to check and see if they sell season passes. LOL.

She was honest that she doesn’t like the other MS modifying drug options over the one I’m on, but said if we’re seeing changes we have to try something different.

And honest that changes seen or not ... the right side function dropping slowly is not great.
Click to expand...
Good on you for insisting on re-assessment!
 
Old Thread: Hello . There have been no replies in this thread for 365 days.
Content in this thread may no longer be relevant.
Perhaps it would be better to start a new thread instead.
Back
Top