@ Rest Area 51, Newbies Lounge Aug 5 '12

[gomer]

Welcome to Rest Area 51's....
......................Newbies Lounge..
a special haven for our family of newbies Dx'd w/MS in recent days or years and old-timers that are newbies at heart, or just want to help. Just follow the green arrow to our Newbies Lounge.

Being a newbie can be as scary and lonely as being in limbo. I know because I was in that situation when I first got my formal MS Dx. Limbo Island was such a great source of information and support between a new eye doc opening my MS can-o-worms and decades delayed full MS work-up & Dx. When I got my formal MS dx, I felt lost, alone and tossed into a sea of sharks.

Remember we are your MS family away from family. The BIG question answered means many more new questions and decisions. For those still working on, seeking a formal MS Dx, I highly recommend you check out MinivanMama's Limbo Island.

We really do get it,
........ we understand like no non-MSer ever could.

Take a well deserved break from your travels on the MSuper highway,pull into a nice cozy shady parking spot, Unwind in our (always perfect weather) Newbies Lounge, pitch a tent or just lay out a blanket and enjoy the crisp cool fresh air . Help yourself to fresh Cider and donuts. The camp fire is roaring in the open pit ready for hot dogs, marshmallows and smore's Feel free to share your ideas, experiences and support to your fellow newbies. Relax, you are among friends, friends that understand. We have a virtual soap box, feel free to vent anytime.

Remember this is YOUR lounge , so enjoy it, hey doc's have their own lounge and this one is OURS! (We have better fresher coffee anyway...ha ha.)

PLEASE.... Let US know how YOU, a member of our MS newbies family is doing.

Have a QUESTION? Please don't be shy........
The only dumb stupid question........is the one NOT asked.

How was your Week?........
...Good I hope, Any Dr.apts tests etc?

....Any Dr. apts. tests etc.

Important Reminder: Our next Newbies Lounge thread will start a couple days early and may run for 2 weeks instead of one. I have very limited web access and will stop in when I can. I plan to be on a road trip from Mich to Fla and back. I plan to say Boo to Journeyman while down visiting my money pit. I think (& hope) I have caught up on car repairs.

Gomer [B][COLOR=DarkRed][I]Sir [COLOR=Black]Falls--Lot

[journeyman]

Sorry re. teaching session.

If you want a medical name for what happened to you it is called "Psychogenic shock." Its when all that is happening to you is just too much and the body and brain shuts down.

I had a friend in the military that I had to give a itty bitty flu shot to. When I turned around and he saw the needle which was about a quarter of an inch long he went gray in the face and hit the floor. For thirty seconds there was no heartbeat. We did CPR on him and he immediately responded. He told me that just the sight of the needle caused him to see sparkly lights and tingly things then nothing. I am not sure whether he had a heartbeat or mine was stopping at what happened but it was very scary for both of us. I was just glad a lot of medical people were standing around.

Self cathing can be very traumatic to non-medical people. Now when my Urologist went to photo cath me I asked for a minute to do what I do with my patients. Several deep breaths and never bear down. It went right in. Then I asked to be where I could watch the insertion.

Not bragging but it seemed like a loooooong way to the bladder. I am sure it was just the mental trauma and event that made it seem so far. Then I was in this empty room that looked as big as an auditorium. He took me on a tour of the ureter openings. I was awed. I probably am only one person in the whole world that can appreciate the human body in that way. Not to offend people of other faiths but I was just awed at what God made. Slow deep breaths and slow removal. In my mind I was walking on a beach and listening to kids playing in the distance. (I've had root canals with no analgesics and with self- visualization, relaxation. I use it to control other pains.) Not everybody can do it and you have to be trained. Often I am not as successful as I would like it. My daughter was born with the use of it for my wife's labor and delivery. Now I am teaching that same technique to that daughter and her husband for her first baby.

Had a very stressful w/e. My brother attempted suicide, (un-successfully thank God.) the Police and Coast Guard found him in the Mangroves on one of the many deserted islands that surround our coast at about three in the AM. He took a gallon of moonshine with him to bolster his courage. Fortunatllty he passed out before he could use his rifle.

Then my Dad who is deteriorating mentally and physically blamed me in a gigantic screaming match for it. I did not even know it happened and was part of some inter-family squabble.

All-in-all I was able to separate myself mentally and walk away from it all unscathed, not unscathed but needing a mental transfusion of support which I got from my daughter. But it was a harrowing and angry w/e. I blame them most because I didn't get anything done with my garden. I know that sounds selfish but we all would have been better off.

I am pretty sure I am heading into my relapse so if I get confused, lots or keyboard errors or disappear from here it will only be for a couple of month until I clear.

I am so looking forward to our visit and lunch Gomer. Keep your insulin pump dialed up. It's going to be rich food.

I wish and pray for the best for all my friends out there who are dealing with the MonSter. I hope you have a good or better week.

Dave Tampa, Florida
"Journeyman"

[gomer]

Hi Loungers......

Dav I hope to head so this weekend. I have a uro test tomorrow, the see the hoof doc wed and MS clinic on Thurs. I saw my fam doc last Fri. He said it was most likely Syncope triggered by the decompressing bladder, remember I had over 300ml in there. I did not go over and out, but it was a bit scary and not like a diabetic hypo. He also said the MS increases odds of syncope happening.


"seemed like a loooooong way to the bladder"

Well me being the curious cat I am, I Wikipedia'd the subject. According to Wiki the male urethra is about 8" or 20cm. I had to go in a good 28cm, I guess I have some long plumbing for a short dude.


You stop inserting as soon as the flow starts. Before I tossed the cth last night, I marked it to measure the inserted length........OUCH!

I got my insulin refil today, and NO I do not have/use a pump. My endo nixed that last year. (that's what ya get for doing too good on MDI).

I am NOT hard to feed, my tastes are rather simple. The harder you try to please, the more odds of messing things up, voice of experience.

quick Q? Where did you chase everyone off to? ha.ha.

Gomer Sir Falls-a-lot

[PeacheyPie]

This week

So this week is the first week since June where I don't have a Doctor's appointment or medical procedure. Hooray! One of my co-workers yesterday reminded me that it was only Monday and stuff could happen, but I'm hoping not!

[journeyman]

??? TIA

I am seeing my Neur today re. my fall last week. I saw a flash and then nothing in my brain. Now you know my brain always has a lot in it and it moves around fast so for it to be empty for ten seconds and then fuzzy and confused for 24 hrs. Is not like me. I doubt if they will do anything as it (a.) has been three weeks. (b.) there don't seem to be any residual problems. (c.) I just had one of the biggie intense MS special MRI a month ago.

And the Doc.s are talking about getting my driver's license taken away. (a sign to me that I am finally really old.)

Old started when I would pick out clothes with my wife and ask her if it looked sexy on me. She would reply yes if I was 18 years old. Now go take it off and let ME pick out something that you can wear appropriate for your age. God I hate this "OLD" stuff. It sure isn't for woosies.

My brother attempted suicide this past w/e... I think I already said all this in a previous post. Relapse is surely on the way.

I am going to see my medication monitor/shirnk tomorrow to re-adjust my meds again. It seems I fell to far down and and not with all that is going on within this grossly dysfunctional family, (no me ) she thinks I may need to come back up some. Maybe I will get my garden done after all before I become full relapse.

Have a safe trip down. The restaurant I suggested in the e-mail I just ate there yesterday with Deb and it was as good as ever. You just don't jinx it like you did one of my other favorite restaurants.

I said I FELT like is was a long trip to the bladder. With MS I will not get into a "P..ing" contest with you. Ha. !!!

See you soon. Bring your canes and we can compare. Although I have nothing to compare to Crystal.

[minivanmama]

Gomer and Journeyman - Enjoy the visit and try to stay out of trouble. Sounds like y'all are going to have some fun.

Gomer have a safe trip down and back.

[journeyman]

Rude Awakening... Back in Limbo

A post to all my friends in Rest Area 51 Lounge and Limbo Land.

To put it in their, (my Neuro's) terms. You quack like a duck and walk like a duck but we don't think you are a duck. They told me I do not meet the "higher" criteria for MS. ??

They just don't know what is going on with me even though I have been dx'd as MS for four years. It was one thing to be in Limbo all that time but to get a "vacation" back there is going to be tough.

They seem to think that there is some seizure component at play. So they are sending me for the EEG, and a Cognitive Neurologist. (didn't know that sub-specialty). I am in for a mass of testing between now and Jan. when we will all meet and try to figure all this out. I am going to post this on Limbo Land so they know I will be returning. I will still do both for now.

When I returned home today and gave my wife the news she pointed out to me that in 1980 I was being treated with
Dilantin for Temporal Lobe Epilepsy. When they discovered my bipolar disorder all the stuff re. epilepsy was forgotten until now. So...the saga continues.

Just wanted to be up front with you that perhaps I have been just an MS imposter. They think not but perhaps I am just a tossed salad of disorders.

I started this life in first grade when I was dx'd with anemia and TB combined. I had no idea I had such a creative body.
I will keep you all posted.

I am heading into what I call my "relapse" so they think this will be a good time to be evaluated.

Dave Tampa, Florida
"Journeyman"

[gomer]

Now MiniVan............

"Enjoy the visit and try to stay out of trouble. Sounds like y'all are going to have some fun"

That reads like a contradiction of terms to me, stay out of trouble AND have fun?

Gomer Sir Falls-a-lot

[alishape]

I hope you don't leave Journeyman. You and Gomer make this such a welcoming place for others, you have to know you're welcome here no matter what those docs say.

I might still be in limbo land myself. The neuro told me that he isn't quite sure the last time I talked to him. Even though I had more spots in my brain, he still isn't sure. He tells me this after he puts me on copax, which I thought was the same thing as a diagnosis.

I figure screw it, if I have to take copax or any other dmd then I have multiple sclerosis. I have to give myself a pretty concrete reason to stick myself with a needle everyday. Anyways I would miss your bantering with Gomer and reports of your (mis)adventures if you left!

[gomer]

The last I know of Journeyman, he was over on limbo island giving Mininvan a hard tease (ha ha)

Maybe Jman-Dav wants to build a real LIMBO island out in the Tampa bay?

So you think we banter about on here? The first time we met was for lunch at a nice sea food place on the bay. I took my meal-time insulin after the meal.......BUT Then decided to have a slice of pie.

But ya get two verbouse guys together....well lets say I had to stop and shoot more insulin before I got very far (headed back to Lakeland, about 30 miles). We were so busy talking I had forgot to take extra insulin to cover the pie. And yes, the pie was so good it warranted having to take an extra insulin shot to cover the pie.

Got a call today, my roto rooter surgery will not be till mid october. Doc told me it will not do much for the PVR, so most likely will have to continue self cathing. I am going to ask my MS neuro tomorrow about this.

Gomer Sir Falls-a-lot

[thewildrose]

Hi all - I sure hope your wrong about the relapse Journeyman! Enjoy your trip Gomer and have fun both of you

I am having a horrid time with the copax (I think) I've had a 6" x 4" HOT red inflammation at my injection site from yesterday - had a fever yesterday and injection site from Monday is also inflamed, red, and hot even though I didn't even see it on Monday ...?

I didn't take the injection today - anyone do every other day? I'm not sure if I need to call someone (neuro and SS usually point me to the other and I get nowhere anyway). I don't know if I should try the injection tomorrow or not. I hadn't had any kind of problem for three weeks.

My pcp started me on gabapentin for pain on Friday - I do believe it's working - good Not nearly the level of pain I'm used to having - but wondering about drug interaction...?

MS dx confirmed by Glycominds blood test. Still haven't heard anything from Hopkins. Mailed my MRI on Saturday.

And yes Alishape - I LOVE Baltimore Took some awesome photos from the roof of the JHH parking garage

Have a good rest of the week everyone!

[PeacheyPie]

Wildrose, we should get together sometime and distract each other.

[thewildrose]

UGHhh

Just got the report from my T-spine MRI - no lesions.

Positive LP, Positive blood test - no lesions - how can this be MS????????? What the #@$! is wrong with me?????

[journeyman]

Everything is the same...No name !

I don't plan to leave. Gomer would be lonely without someone to pick on. We love teasing each other in such a way that we hope you learn what goes between the lines.

Nothing has changed. They are still calling me a MS'er. Until they find out different.

I dug out my neuro/cog/psych eval from 2008 and they were saying the same things that my present neuro's are saying now. The only thing different is that they, in '08, were projecting what I am dealing with now. They said I had had a stroke and it was messing with all the wiring. They, in '08, said that I would progress and get worse but they attributed it to the stroke.

Then In 1980 the were treating me for temporal lobe epilepsy with a lesion in the same area. I was treated with Dilantin. That lasted a year until they found out I had Seasonal Affective Disorder, (SAD. or bipolar.)

So maybe these and the guy back in '08 were right. They called me a "complicated plethora of disorders.) Everybody who knows me tells me that I am complicated. I kinda like that. It helps me to feel better about all of this new (old) stuff.

Thanks for the support and I hope to keep giving Gomer the time that he so deserves. Last post he called me Verbose. That is my wife's word for me. I'm collecting all of these neat names. In H.S. I was just called wierd.

Love you all and plan on continue supporting you. I have enough wrong with my body that I can be of some support to you. Look out Gomer - my body seems to be catching up with yours.

Dave Tampa, Florida
"Journeyman" 106 temp and 45% hum.

Was going to work in garden but FORGET THAT !!

[gomer]

Look out Gomer -
my body seems to be catching up with yours.

Dave now I KNOW you mind is off track! I can not imagine anyone wanting to catch up with my cash 4 clunkers reject.

Gomer Sir Falls-a-lot