Good thoughts for Phoenix Rev appreciated

McIrishJihad wrote:

PR + Rubb - still thinking about you two.

The treatments for MS have been steadily getting better for the last few years. We've been dealing with my wife's MS diagnosis for about 8 years now.

If you've got questions, or just want to talk to some folks who've been through it, drop a PM and I can set something up.

Hugs, kisses, and Hello Kitty.

+1 - my cousin has been battling MS for about 15 years now. Much love to you both.

Tanglebones wrote:
McIrishJihad wrote:

PR + Rubb - still thinking about you two.

The treatments for MS have been steadily getting better for the last few years. We've been dealing with my wife's MS diagnosis for about 8 years now.

If you've got questions, or just want to talk to some folks who've been through it, drop a PM and I can set something up.

Hugs, kisses, and Hello Kitty.

+1 - my cousin has been battling MS for about 15 years now. Much love to you both.

Thanks for sharing that guys.

Take some comfort from this, if you can RubbRev, plus, oodles of positive thoughts for you both.

I'll be thinking about you two. I don't know if there's anything else I can offer, but I will be out here with my very best wishes for both of you.

Yeah, I feel like sh*t... and I am going through some things... but I still wish more than anything I could help to spare you two that.

If you guys need anything, just let us know. I will certainly have a little money to spare post-move, and would be glad to put it towards something to help you two out.

Demosthenes wrote:

Yeah, I feel like sh*t... and I am going through some things... but I still wish more than anything I could help to spare you two that.

If you guys need anything, just let us know. I will certainly have a little money to spare post-move, and would be glad to put it towards something to help you two out.

Agreed, shout out before the Steam Sale hits! I'm sure my dollars will be better placed here, than in another's pile of shame.

You all are very kind and I appreciate the supportive words.

It has been a very tiring and difficult day. Rubb Ed gave you the highlights, but there was a lot covered over the 90 minutes I was in the examination room. The two neurologists have definitely ruled out any form of epilepsy, but they said the spinal MRIs point to MS and gave me the name of the MS specialist at Barrow along with an endocrinologist at Barrow to get more answers. They both said they were shy about giving a definitive diagnosis of MS because I am not showing "classic" symptoms of it, but I am showing several other symptoms of the disease. Of particular concern was the change in how frequent the stabbings pains are and what I am doing when they occur. It used to be just from coughing, sneezing, having an orgasm, or pushing during urination. Now, I get the stabbing pains when I lie down and then get back up or stand up suddenly or bend over to pick something up.

We discussed the various types of MS, and we went over all the test results. Everything was fine except the MRIs and a couple of issues with the blood work including a Vitamin D deficiency and low testosterone. The latter was a surprise to the neurologist because of my incessant libido, so they are referring me to the endocrinologist to see if she can determine the disconnect.

My friend Kerry from work went with me to the examination with me and I said to her as we drove away, "So, they are afraid to say for sure that I have MS, but they seem convinced I do and want verification, right?" Kerry agreed. I understand their hesitance. They both tend to treat epileptic disorders and not MS, so they are having me see an MS specialist. That makes complete sense.

They also took me off one medication and put me on three new ones to help with pain management. They said that if these last ones don't work, then we have to look into the realm of stronger medications that have plenty of side effects, especially those in the narcotic class.

I am just trying to take this all in, and some of the grieving has set in because I have had to make so many lifestyle changes in the past few months. It is unnerving to not be able to pick up things off the floor or be able to ride the thrill rides at Disneyland because of stabbing pains in the forehead.

Luckily, I do have a very good support system, but to be honest, I feel like crawling into a corner and curling up and just hide away for a period of time.

The next stop is the MS specialist and the endocrinologist, and, I am sure, more fights with my health insurance.

Also, please don't limit your purchases to hold on to money that you may wish to funnel to us. We are doing okay on that front.

Thank you all so very, very much for your love and support. It really means so much to me and Rubb Ed.

If it does turn out to be MS, you might consider looking into 'helminthic therapy', which is actually a thing.

See, our immune systems co-evolved with worms. Until relatively recently, all humans carried a worm burden, And a whole branch of our immune system is designed explicitly to find and kill worms, while worms then have a bunch of chemicals they secrete that moderate our immune response. Worms and humans go back a long, long way.

Well, in the absence of worms, the worm half of the immune system can get sensitized to, and attack, the wrong things. Allergies are probably the best example; allergies appear to be the immune system misidentifying pollens and dander as a threat. But things like lupus and celiac disease and, well, MS, are all other symptoms of an immune system that's gone off kilter.

So, helminthic therapy is still pretty new, but they basically give you pig whipworm eggs. They grow in your intestine just like they would in pigs, and they moderate your immune response like they would in a pig, but they can't reproduce in humans, so they eventually die of old age. So you need new eggs every so often, you're not infectious, and if you ever decide you don't want them anymore, you can just stop ingesting new ones, or of course take a de-wormer and kill all of them within a couple of days.

I also saw a new treatment that looks especially promising, one that sort of 'resets' the body's immune system not to chew on myelin so much. That's still in second-phase trials, but might be ready for you just in time.

Regardless, if it is MS, I'd definitely look into the worm treatment. It's supposed to be pretty amazing for allergies, too, if you have them.

Positive thoughts heading your way. Thanks for keeping us informed as to what is going on.

Sorry to hear that there's more bad stuff coming your way. I hope the endocrinologist and MS specialist have more answers for you. Not much of a surprise that they're struggling with the diagnosis, MS or else, it's not a clear cut case for sure. Hopefully, you'll soon have answers though. Fingers crossed.
If it is indeed MS, I'm going to second Malor's suggestion ofhelminthic therapy, there's been a few studies on it, and it does seem promising. No miracle cure of course, but it does seem to have good results.
Sending positive vibes your way++++

m0nk3yboy wrote:

Take some comfort from this, if you can RubbRev, plus, oodles of positive thoughts for you both.

Hehe, RubbRev... Love what you did there. I think we should use it exclusively to speak of them, from now on.

Well, we are the new Brangelina.

Rubb Ed wrote:

Well, we are the new Brangelina.

RubbRev

Makes them sound like an 80's hip hop act.

You could get hello kitty stickers or decals though. I would be happy to send those to ya.

Against better judgement, I was still kinda hoping the doctor would tell you to take this pill, get a good night's sleep and your troubles would be over.

If there's anything I can do, please let me know. You're in my thoughts, Zach.

Love & Internet hugs guys! What happens when RubbEd hugs PhoenixRev? RubbRev

There's more than "RubbRev" going on there, I can assure you.

RubbRev reminds me of Red Rum except that RubbRev backwards is verbbur.

/non sequitur

ClockworkHouse wrote:

RubbRev reminds me of Red Rum except that RubbRev backwards is verbbur.

/non sequitur

Clocky! Now everyone knows their safe word...

Stunning revelation! I didn't erase those tapes like I promised! Just proof that trans people are inherently deceptive!

Spoiler:

Zach and Dave, I want to give you guys all the hugs.

Spoiler:

We will gladly accept them.

Spoiler:

I also am here to deliver hugs, though I will let you guys sort out any tangential butt squeezes yourself.

WHY IS EVERYBODY WHISPERING

Amoebic wrote:

WHY IS EVERYBODY WHISPERING

CLOCKY STARTED IT

Thinking of you guys and hoping for a good turn.

Sending good thoughts your way. I'll smoke a pipe in your honor, PR.

Amoebic wrote:

WHY IS EVERYBODY WHISPERING

Spoiler:

Why are you shouting?

ClockworkHouse wrote:
Amoebic wrote:

WHY IS EVERYBODY WHISPERING

Spoiler:

Why are you shouting?

Today has to have been one of the more interesting days in this journey.

It started out with a rather ignorant coworker recoiling and grabbing the hand sanitizer when I mentioned to her and a group of people that they think I have MS. Thank goodness I have very limited interaction with that person because I am not sure I could resist the opportunity to be incredibly snarky or sarcastic with every breath.

This was followed by the good news that I will be able to see the MS specialist at Barrow before Thanksgiving. I am breathing a sign of relief on this as I was hoping that I wouldn't have to wait until after the holidays. Unfortunately, I have to find a non-Barrow affiliated endocrinologist because the ones at Barrow are booked through February. Eeesh. I am not sure I have that much patience left. So, I was given several names and can proceed from there.

Then there was an odd phone call I received from a sexual health therapist who had been referred to me due to my libido issues. I am still processing all of it and may address it here when I really grasp all of it and what it entails. But, I left the conversation knowing that the people at Barrow really do give a damn about each and every patient. I am certainly blessed to have the Institute in my hometown.

I also had a wonderful pick me up when I got home. Sitting on my desk was a large package from the U.K. I wasn't expecting anything from the British Isles so my curiosity was certainly piqued. I opened the package and read the note: "Hi David and Zach. Congratulations on your anniversary. I thought this photo was so great I couldn't resist doing a drawing of it. All the best...

Here is the photo:

IMAGE(http://www.feastinginphoenix.com/images/contentment.jpg)

And here is the drawing, masterfully created by Higgledy:

IMAGE(http://www.feastinginphoenix.com/images/contentmentdrawing.jpg)

Thank you so much, Mr. Higgledy. You brought both me and Rubb Ed a great amount of joy this evening. This will be framed and be on the wall very soon.

Wow!

Phoenix Rev wrote:

It started out with a rather ignorant coworker recoiling and grabbing the hand sanitizer when I mentioned to her and a group of people that they think I have MS.

Ugh, I don't think I could've shown restrain, and probably would've remarked "it's not contagious, you moron." *facepalm*

Great news that you'll be able to see the MS specialist sooner rather than later. The wait has already been excruciating, I'll bet, so anything to shorten it is a good thing.

Glad Higgledy sent you the drawing. You guys look great, was really sweet of him!!

Keep you two in my thoughts+++ *hugs*