Primary Progressive Multiple Sclerosis here

[mr blur]

and it sure is a lot of fun!

[sevendogs]

1. You have the same attitude as I do

But my MS is Secondary Progressive MS.

Hang in there, buddy!

[mr blur]

4. Hell, a lot of it is funny!

Falling over, stumbling around, wearing an eye patch and zooming around in the motorised wheelchair scaring old ladies and little children, making a fuss in shops which don't have a lift, insulting people in BMWs who park in Disabled parking spaces when they shouldn't. Of course, I'm not always in a wheelchair - sometimes I can walk - but it's more fun when I am!

[Rainbowreflect]

2. My sympathy. My brother has MS too.

My husband has Muscular Dystrophy. It definitely make life more challenging.

[ProfessorGAC]

3. RRMS Here

10 Years since diagnosis closer to 11 since onset.

The Professor

[SiouxJ]

5. Me too.

But you already knew that ;-) . :hi: Professor!

For those who didn't, I guess I have RRMS, though the Neuro who diagnosed me didn't believe in specific labels so he never told me that specifically. I haven't had a flare in about 5 years, since I started on Avonex. My recent MRI's show new lesions though so I'm going down the the Scottsdale Mayo on Friday to discuss possibly switching meds. I don't have any new symptoms, so I am hesitant to do anything different really. My new regular Neuro (the wonderful man who diagnosed me has since died) wanted me to start on Tysabri immediately when he saw my most recent MRI's, but I didn't rush into it, and it has since been pulled from the market after a person died while on it. It was supposed to be THE new drug of choice as you guys probably know, but that is all on hold now. So anyway, since this guy isn't an MS specialist I'm going down to Mayo, to get a second opinion from their MS specialist. I've seen him before and I value his opinion more than my regular Neuro's, who I think takes those incentives from drug companies. I just have a feeling this is the case.

Other than that I am doing well. Everyone is always shocked when I reveal that I have MS as it doesn't show. I am fortunate in that most of my symptoms have left me, though I do have occasional dizzy days.

I used to belong to a bunch of on-line MS support groups but most of them were full of Shrub lovers and after many altercations, I finally left all but one of them; this one has a rule about not posting about politics so I can stand being there most of the time. Every now and then somebody tries to slip in a Rush talking point, but most people ignore them. I'm glad this group has opened up though as it's nice to be among intelligent chronic disease sufferers ;-) .

[ProfessorGAC]

6. The Shrub Lover Thing Happened To Me Too

Bunch of dumbasses who supported the war because Saddam did 9/11. Idiots. After that i told them all they were ignorant, uninformed, and stupid, that i was out, and they wouldn't be hearing from me again.

I told them i felt bad they were sick like i was, but i couldn't have sympathy for anyone that foolish, that selfish, and that willing to accept incompetence at the highest levels.

Boy, i can be a bastard at times.

Send me a PM about the "good" site, please.
The Professor

[SiouxJ]

7. The worst one that I belonged to also had a bunch of Wal-mart lovers

I was always one of like two people trying to point out why they shouldn't shop there but it fell on deaf ears because - how can you not like Wal-mart?! They have everything and it's cheap!

The worst part was trying to explain why voting for Republicans was not in their best interest as people who require a lot of medical care and medication. It's amazing how backward they see things. They would actually defend the high price of their meds - saying the drug companies use all that money for research. They actually believe that because I guess Rush said so. Their defense was always to just spew back things they heard on rightwing radio.

I left shortly after the war began because they were all still telling me about Saddam's WMD's etc. I think my last words were something to the effect that there probably were no WMD's and this was a senseless war that will last forever and Bush will have all this blood on his hands when it's over. Still sounds about right doesn't it?

The only one I still go to is ok. It still has a lot of kool-aide drinkers but those issues don't come up much. I use it mainly for information and to compare notes. I'll send it to you. A lot of the people there are Canadian actually, which is why I think I can stand it most of the time, lol.

[fudge stripe cookays]

8. Hi, I'm a newbie in this forum, but think I may have MS.

Any words of wisdom for me?

I first saw a neurologist several weeks ago. We have a pump faucet in our bathroom that was leaking, and I stupidly bashed it hard with the palm of my left hand. Part of my left hand went numb (and is still numb).

Doctor wanted to schedule me for an EMG. In the meantime, I began having problems with parasthaesia; when I duck my neck down too far, I get an electric sensation and tingling in the back of my neck, with sensations traveling down the outsides of my thighs, then my feet went numb. As of yesterday morning, the insides of both my feet are now full time numb.

When I went in for the EMG yesterday, the doctor told me she wanted me to go in for an MRI to rule out MS.

Tonight, I did an internet search on symptoms, and am getting more frightened as I read them. I guess that was kind of stupid; like watching a scary movie before bed. I've been having problems with blurred vision and/or double vision when I drive, and sometimes at work.

And what really scares me is that they list "inappropriately cold body parts." I've been having a lot of that lately. In my shins, thighs, and feet mostly.

What sorts of symptoms did everyone's MS begin manifesting with? How quickly did the more serious ones begin? What sorts of medications have you been put on? How much do you spend a month on medications?

My mother has a friend who had slight numbnesses begin, and several weeks later, had a mild stroke for the first time. I'm trying not too think about that.

We were planning on trying to get to Canada when we have our bills paid off (very soon). This may completely thwart our plans- with a chronic health problem, they may not approve me.

Thanks for any input; I'm mildly freaking out. I know many of you have bravely been living with this disease for some time. I could really use your knowledge here.

FSC

[mr blur]

9. The first thing to do is not to panic!

Hi, and welcome.
Some of your symptoms do sound like those of MS, but could be something else. Before you go any further you need to know for certain. Before an MRI scan confirmed it for me, I was in a panic and reading whatever I could find which both confused me and made me panic even more!

Everybody's MS is different - seven years after the diagnosis I still don't really know exactly what to expect from day to day. My wife and I call it The Inconsiderate Disease because it doesn't seem to give you many clues for making plans. Having said that, having a definite diagnosis made a big difference to me (and I would guess for others) and I was able to get a handle on this and work out how to live with it. You may pass people with MS in the street every day and not realise it - many people are able to carry on with their lives and deal with the changes MS brings.

I don't want to say too much more because it's not certain that you have it and so there's no point in talking about things that may never happen in your life. But I realise that ignorance is what makes most people afraid (it did me) and if you want to PM me (and please do!) I'd be really happy to talk things over with you and answer any questions I can.

Don't panic and don't be afraid and try to get the MRI organised as soon as you can. I do understand the feelings you're experiencing - anyone on here with MS does - and if I can help, I want to.

[fudge stripe cookays]

10. Thanks, mr. blur.

I appreciate it.

I keep telling myself that. "Don't panic! You don't even know you have it yet!" But the inappropriate cold spots thing made me feel pretty down deep that I already know after having all the other symptoms; that the MRI will just be confirming it, not diagnosing it.

The doctor's office was supposed to schedule the MRI for this weekend or an evening next week before I leave for vacation. And I never heard back from them. The nurse was supposed to be checking with my insurance; so this doesn't bode well.

I'm calling them first thing Tuesday morning to find out. I had originally told them there was no way I could get off work during the day; I'm swamped until I leave for vacation. I"m determined not to have my 2 weeks spoiled by this.

As soon as I know more, I'll be in touch. My main worries right now are stemming from the "not being able to get health coverage" and "not being able to leave here" thoughts.

FSC

[mr blur]

11. Any time I can help,

just drop me a line. Take care.

[SiouxJ]

12. I was diagnosed 5 years ago

and I'm a lot better now than I was then. They have some great meds now for MS. In fact, no one ever believes me when I tell them I have it.

I know a lot of people who have MS and don't have health insurance. They are getting along fine. The drug companies don't want you to know it, but they give discounts (big ones) to people who don't have insurance. There are all kinds of resources so don't panic. You're getting a little ahead of yourself. Wait for a definite diagnosis before worrying about all that other stuff. Stress can make symptoms worse.

Let us know when you find out more. Feel free to PM me if I can help in any way.

Try to relax. :-) Everything will work out.

[fudge stripe cookays]

13. Thanks Sioux.

I need to call the doctor first thing tomorrow to find out what's up with the MRI.

Yesterday, reprehensor and I were going to go see "Hitchhiker's Guide" after we tried out a new UU church and had some lunch. We were exploring our favorite huge bookstore (and 2nd home), and I had to sit down a couple times.

I got so exhausted, and my legs were numb from the knees down. They just didn't feel like working. We skipped the movie and just came home so I could rest.

I'm trying to relax. I'm excited for my vacation, but am having to look at doing less, and modifying my plans a bit if I get too tired. I'm heading to the Midwest by myself to do genealogy research.

Don't worry, I'm taking plenty of precautions while I'm there. Lots of phone calls home, a note in the rental car, full charged cell phone at all times (taking charger with me), etc.

I'll let everyone know when I know for sure.

FSC

[ProfessorGAC]

14. I'll Copy Sioux's Comments

Although i walk with a slightly distorted gait, and my legs hurt everyday, it's not unusual for people to be shocked when they find out i have it, and i'm going on 11 years.

Mr. Blur's "Don't Panic" advice is very sound as well. There can be no surrender. A disease like this doesn't need you to help it take you down. Keeping a good attitude, fighting through the bad days, and maximizing the value of your good ones is a very strong way to stay ahead of the illness.

Take care. Don't fret, and get the right tests done to see what you really have. Even if it is MS, don't freak out. You can manage life with it. You can trust us on this. We've been doing it for 5, 7, and 11 years.
The Professor


BTW: Sioux, where in the midwest? (PM me with your answer.)

[SiouxJ]

15. The Midwest?

huh? Sorry you lost me. :shrug:

In any case, good point Professor. I think the thing that helped me the most when I found out I had it, was talking to people who had been dealing with it for years and were doing ok. It's very re-assuring.

[ProfessorGAC]

16. Brain Cramp Sorry

It was Fudge Stripe that said that. My fault.

The Professor

[SiouxJ]

17. Whew! I thought it was my brain that was cramping

could have easily been the case ;-) . I do have the occasional cognitive fart.

[fudge stripe cookays]

18. Hi Prof--

Sorry I missed your question, I was there already!

It was often rough to find Wi-Fi spots where I needed them when I needed them.

I started off in Chicago, then traveled up to Rockford, Beloit, and Madison, then drove over to St. Paul.

Found lots of dead people to help me find their live descendants and bring the lines up to date.

FSC

[fudge stripe cookays]

19. FSC update- MS sitch

So I had an MRI before I left on my research trip, and they wouldn't give me the results until I got back.

I got in last night, and while giving my dog a big hug (he was SOOOO happy to see me...) my entire left side went numb. My left arm froze up and seized up to my shoulder, while my hand clutched.

I was terrified and thought I was having a stroke. reprehensor called 911, and the paramedics came. They didn't think it was that since my blood pressure was only up a small bit. We went to the ER (without the ambulance- we didn't want the expense), and by the time we'd been sitting there awhile I started feeling OK again.

So I got into the doctor first thing this morning, and the diagnosis was positive. I have MS.

So after bawling my eyes out and getting it out of my system now that I know for sure, I have to stay home for 5 days with a steroid IV. After that the doc and I will confer on my treatment. Right now, Betaseron is looking the best.

Thanks everyone for trying to keep my spirits up. I'm sure I'll be full of questions for you in the near future.

FSC

[SiouxJ]

20. So sorry

but it ain't the end of the world ;-) . The way I looked at it when I was dx'd was that there are a lot of worse things that have similar symptoms, so I was kind of relieved.

The 'roids can be fun or horrible, depending on how you react to them. I've been on them twice (for 3 days each time) and I had a very good reaction to them. In fact, I felt kind of high the whole time and was giggling at stupid things. Others don't fair so well. I hope you do well on them. They can work miracles; stop a flare in its tracks. After my second session on the steroids, I actually had a reduction in my previous symptoms, which I had had for years, so they can be very helpful. Here's a tip- you may experience a metallic taste in your mouth when they are administered, so you might want to chew gum or have a lifesaver or something.

Good luck and relax. Like I said, it's not the end of the world. If you have any questions or just want to talk, feel free to PM me any time.

[ProfessorGAC]

34. My Steroid Experience

I went through the 4 day regime twice. Once as a diagnostic tool (if you respond favorably, it leads to more tests since it's probably MS) and once just to attack symptoms.

It worked a bit for me, although the burning sensationsdidn't improve. I just had fewer spasms.

But, the side effect for me was over-cranked feelings. I think i slept about 5 hours over the whole 4 days! But, in a few days i was back to normal.

I don't think i'd bother with it again unless i was having more debilitating symptoms.
The Professor

[SiouxJ]

40. Oh yeah. They do make you very emotional don't they?

I was crying at commercials; very anti-sioux-like behavior.

[fudge stripe cookays]

42. I'm just waiting to see what transpires...

This metallic taste is really gross. So much for the orange juice I was going to pour myself. Blegh.

I warned my husband about the bitchiness. And the doctor wrote me a prescription for Ambien, which I won't use unless I absolutely need it. I'm practically narcoleptic.

I need to call her back about the gradual, steroid withdrawal steroid. She was supposed to write me a prescription, but evidently forgot.

FSC

[SiouxJ]

43. Welcome to the world of tons-o-meds!

Ambien is wonderful when you need it. I use it about once a week for my insomnia. I use herbs and melatonin sometimes so I'm not dependent on the Ambien. I don't know if my insomnia is from my MS or from my MS meds but I've had it for a while now. Glad it's not a problem for you and hope it never becomes one.

Sounds like they want to give you an oral prednisone to help you come down off the medrol? Hmmm. It wasn't a problem for me but I was only on it for 3 days. I've used the oral stuff before and it can be hard on your stomach so they gave me prilosec or something with it. I only mention that in case they don't tell you that. ;-)

[fudge stripe cookays]

44. Yeah, I had to take prednisone when I first injured my hand....

back at the beginning of May. That's what started my going to the neurologist. I'm still wondering if I triggered this whole thing somehow by bashing my hand against a faucet really hard so that my hand became numb.

I hate the prednisone. It dissolves in my mouth before I can get it completely down, and it's SOOOOOO bitter! But the home health lady told me that if I don't take them I'll have the most godawful headache that nothing will be able to help.

I hate headaches and have them often, so that sounded better to me.

FSC

[SiouxJ]

45. I think mine was triggered too

I was fine until an idiot doctor I had suggested I take a break from birth control pills. It was right after that that I started getting symptoms. Since then doctors have told me there is no reason to take a break from them. The one who took me off was an old guy and set in his ways. I was so healthy until I went off them and I've had nothing but health problems since. I'm back on of course but I think it's too late. Probably just coincidence but it's always in the back of my mind. It was a shock to my system, sorta like your hand injury, so who knows. Our immune systems may have kicked into overdrive or something :shrug:

[preciousdove]

21. A small percentage of what looks like MS is Lyme Disease

Problem is that about 6 weeks after infection long before such severe symptoms manifest themselves the blood tests for Lyme are useless and most doctors are not aware of that. Neurologists are better then other specialties for looking for other diagnosis than the obvious.

Why this matters is that steroids depress the immune system and make Lyme much, much worse. The best treatment for late Lyme Disease is antibiotics and some medicines that make them work better. They generally use two or three because the spirochetes actually morph into about three different forms to avoid antibiotics/immune system and different antibiotics work better on one form or another. About the only way you find out is if you get better after taking antibiotics at this stage and a short course would not make much difference you need about 6 weeks minimum. Lyme is a deep tissue disease. It takes 30 days for oral antibiotics to reach some outer areas of the skin and some TB gets treated for six months to a year so it is not unusual. Alternative treatment for Lyme Disease in the US and standard in Europe for MS is Hyperbaric Oxygen Treatment. I had it for 4 weeks in 2001 and the best part was watching the CP kids just before us. By the end of the month 4 year olds were walking for the first time on their own and riding trikes and hot-wheel like things.

Tom Grier, MS did a study with an MS group in Wisconsin in the mid 1990's. Funding was pulled but he was able to get some results. In the support group 26 of those had symptoms consistent with Lyme, headache, fatigue, brain fog, pain and neuro or psych symptoms. Three tested positive for Lyme. All took antibiotics for 90 days and three responded. Since the funding was pulled and they were paying for the meds on their own they made the decision to continue treatment for another 3 months. 3 more responded demonstrably and 5 of those six have had no more flare ups. About half said they felt they were doing better after treatment. (Some damage is permanent in MS and Lyme.)

My neurologist diagnosed Lyme and RRMS in 1990. After the HBOT I had a re-evaluation for MS and a second opinion at Parker-Hughes Immunology Clinic. I have been battling a bone infection cultured as the minor from of staph in my face and head since at least 1999. Surgery and high doses of several antibiotics last month may have finally killed it. MS can depress your immune system and there is no guarantee that after having Lyme untreated from 1974-1990 that it is gone for good.

After all these years I still get caught up short when I flare up. I have to live as though I am well when I am with some limits on exposure to heat and fatigue but it is a whole other world when I am living disabled. My youngest son lived with me until October of last year and he couldn't keep up either. He called me Dr Jekyll and Mrs Hyde. I can be normal in the morning and bedridden by night on any day or not. I can't really plan or commit to anything. But the alternative is unthinkable. So there you go.

[SiouxJ]

23. If the MRI is what they are basing the dx on

I would be pretty confident it is MS. My dx was based mainly on the indisputable evidence provided by the MRI (lesions in my brain, corresponding to my symptoms). If there is any question after that, they usually go for a spinal. My MRI was so conclusive that they didn't bother with the spinal. Correct me if I'm wrong, but Lyme does not show up as lesions on an MRI does it?

[fudge stripe cookays]

25. You're right in my case, Sioux.

There are 3 or 4 lesions in my brain already; one is in the Corpus Callosum, which she called one of the main diagnostic centers. That was pretty conclusive, but she still wanted to do a spinal, which I was cringing about.

Then she saw that they had indeed done a spinal MRI as well, and that cinched it for her. My episode Sunday night (entire left side going numb, left hand and arm siezing up) were indicative of the lesion there as well.

Since she could tell I was so freaked out about a spinal tap, she told me it was MS, and I didn't need it.

FSC

[SiouxJ]

27. I got out of my spinal tap too ;-)

I'm glad you did as well. That's all you need on top of the pain and discomfort you're already in; as well as the emotional shock of it all. I wish more Neuros would consider that. Some insist on using all three diagnostic tools for MS, before giving a definite dx. My Neuro (who was a saint and sadly has since died), said the MRI's of my brain were SO conclusive (when matched with my symptoms) that there wasn't any doubt in his mind. The radiologist concurred. Many times I guess it isn't that cut and dry, and some people cannot get a definite diagnosis for years, so in a way, we're lucky. Evidence shows that the sooner you get on the meds, the better you should do on them, as far as controlling the disease goes. Most insurance companies will not approve the meds until you have a definite DX. I have friends that are suffering because they cannot get a definite and so they can't get any type of preventative meds. I always felt VERY fortunate the my MRI's were so blatant.

I never went for a second opinion because my Neuro was an MS specialist and he had dealt with the disease for many, many years and I trusted him implicitly. If you feel the same way, then don't worry about it, but if not, a second opinion isn't a bad idea.

[fudge stripe cookays]

29. Well, at this point,

I trust my doctor.

It's her office staff who are making my life hell. Her main assistant is REALLY pissing me off.

There are now 4-5 major examples of her fuckups that I told my doctor about yesterday, and I told her I did not want to change doctors, but I would if things didn't improve.

1. Scheduled me for an MRI before I left. Unfortunately, neglected to tell ME I was scheduled for one, so I did not get it earlier.

2. This led to me having the MRI THE NIGHT BEFORE I left for vacation. They told me it would be 48-72 hours to get the results.

While I was traveling, I was pretty busy with my genealogy hunting, so I did not REALLY begin pressuring them until almost 2 weeks had passed.

I called them from St. Paul, the 3rd leg of my trip, and asked the assistant to PLEASE have the doctor call my voicemail and at least let me know if I had MS or not.

She took down the cell phone number and said the doctor would call. The entire rest of the day-- no call.

I called back the next day, and she told me the doctor had tried calling, but got no answer, and couldn't leave a voicemail. I tol dher there was no voicemail indication on my phone at all.

3. She read the phone number back to me: SHE HAD TAKEN THE NUMBER DOWN WRONG!

4. I show up yesterday when they say they'll try to squeeze me in. First thing-- the assistant asks me where my films are. Evidently she had told me over the phone to go get my films and bring them by, but with her strange, slurred, valley girl type accent, I didn't hear anything about picking up the films.

5. I heard her reading my name to the assistant at the MRI office to see about getting the films and she was MISSPELLING MY NAME TO HER!

I have about had it with this girl, and I told the doctor yesterday. I said I didn't want to change doctors, but that I'd had enough, and with a major chronic illness that I was going to have to deal with her and her staff for awhile, that I would not hesitate to change.

She promised they would speak to the assistant. Yesterday afternoon, things seemed to be a bit better. She seemed to be enunciating a bit better over the phone. One more fuckup though, and that's it.....

[SiouxJ]

32. Your experience sounds just like mine!

I had the office manager from hell, whom I still to this day blame for me suffering longer than I had to. She would not return my phone calls and I think she got pleasure out of feeling like she was in control of my destiny. I think had I been able to get through to my doc when I needed too, he would have put me on the steroids sooner and I would have recovered from my first flare faster. She wouldn't convey my sense of urgency to him. Luckily she was fired soon after my dx. I know exactly what you went through!

[ProfessorGAC]

35. I Had The Spinal

No big deal, really. My neuro was very good. His manner was such that by the time i told him i thought i was numb enough for him to do it, he was done. I guess i was numb enough before i even knew it!

But, that is the most definitive test, based upon a greatly elevated level of a protein in the fluid. They do it last because it's the only really invasive test.

I just stayed flat on my back for the needed 2.5 hours and my wife read me questions from the cards on an Andy Griffith Show trivia game.

Then we put the seat back and she drove home with me lying flat. No headache, nothin'.
The Professor

[SiouxJ]

37. Lol. The Andy Griffith Show?

You are a wealth of knowledge ;-) .

Glad it didn't hurt. I've heard that if it is done by someone with a lot of experience, that can be the case. I've also heard the opposite.

Turn it up to 11! ;-)

[ProfessorGAC]

38. I'm A Freak About That Show

Just like most triv games, there are levels of questions. Some of them, one has to be a complete geek to know. However, full disclosure, i knew many, not all, of the geek questions. I knew Andy's address, for instance. But, i didn't know the address of the courthouse, or the road where the Filling station is.

The game centers completely on the black & white era, prior to Don Knotts leaving the show. I don't watch the "Kiss of Death" era when Emmitt and Howard became "important" characters. Eeep!
The Professor

[SiouxJ]

39. Sadly I probably know as much about

Gilligan's Island and the Brady Bunch :o . I'm a child of Sherwood Schwartz I'm afraid. I know my secret's safe with you ;-) .

Never could stand Howard.

[fudge stripe cookays]

41. Ha! Me too!

I don't think I've ever seen a full episode of Andy Griffith. However, I have seen EVERY episode of Gilligan AND the Brady Bunch multiple times!

Great minds, and all that.
FSC

[ProfessorGAC]

46. Well, Now We Must Have Words

I don't want to lecture you! Don't want to! But, you MUST watch a full episode from seasons one, two or three of the Andy Griffith show. This is an order. It's good for the MS. Trust me!
The Professor

[SiouxJ]

47. I always liked that pickle episode

the one where Aunt B was making those horrible pickles and they would pretend they loved them so she kept making more. It still makes me laugh. Yes, laughter is good for your MS, so I suppose you do have a point ;-) .

Oh and FSC - my favorite ep. of Gilligan's Island is the Ghost one. It has nothing to do with the fact that I love anything in the Halloween genre (that's a lie) .

[fudge stripe cookays]

49. The Mosquitoes, baby!

Still my ALL-TIME favorite groovy episode.

Hilarious Halloween story: If you do a search on DU with my handle and Halloween, you'll see some of the pictures for reprehensor's and my all-liberal Halloween party that we had last year.

One of our props, a framed lenticular (changing) photograph (that turns into a skeleton face) is still sitting on our cedar chest in the living room. I didn't want to glass to get cracked when we packed up all the other stuff.

When the paramedics came Sunday night, one of the guys saw the picture and then about FREAKED out. It was hilarious, in spite of the situation.

Plus, our front door sticks really bad. Before everything started happening the last month or so, our next investment was going to be a beautiful new door and shiny new door hardware (knob, lock, etc).

When the one guy needed to go back out the ambulance for something, r. told him to try going out the garage. We'd just pulled up and the light was still on.

But we forgot about our 7 foot tall vampire, Barlow, that I'd made out of 2 x 4's, piping, an old thrift store raincoat, and a Halloween mask over a wigform.

This guy let out a scream that would have made Stephen King proud. We had to apologize profusely and keep telling them about our big Halloween party.

An entertaining evening in spite of it all. Now I have a funny MS story.

FSC

[SiouxJ]

50. I had an amazing Halloween party too!

Seems we have a lot more in common than our MS. I'll pm you the link to my personal website and you can take a tour of the house (before the guests arrived I shot the whole thing). You'll love my "George W. Bush Admin. R.I.P." tombstone (too bad it didn't end up that way). I even made 5 Halloween music discs and a jack-o-lantern cake. I've never not carved jack-o-lanterns at Halloween and I just turned 40!

I keep my Halloween party-ware up on display year round as well.

That's great that you got to have a late reaction to your Halloween decorations, lol. Love that!

The mosquitoes was a good ep but nothing beats the ghost one, sorry. Also loved the one where they went to the mysterious island and switched bodies. :-) They don't seem to run that one very often.

[SiouxJ]

51. Ok, I just checked out your party

here's the link for anyone else who is curious: http://www.democraticunderground.com/discuss/duboard.php?az=show_topic&forum=105&topic_id=1922028

All I can say is, . . . WOW! Very cool! You have the Halloween Disease too!

Here's my graveyard:
Remember, this was October (before the election). It was a positive thinking graveyard :-) .

[fudge stripe cookays]

52. Great tombstones!

I wanted to carve a few more before the party this year. I'll have to see how I handle the heat in the garage. Probably not real well.

I went to an insulation supply place on the other side of town and stuffed our Honda full of the heavy duty 1 3/4" thick insulation, then got some cool fonts online and blew them up in Word so I had a template to work from. Taped them on the insulation after I cut it out with a jigsaw. Our garage was COVERED with insulation turds.

I found some great sites that show you how to make the fencing and the vampire and the tombstones. This one guy's site in particular:

http://www.halloweencreations.com/projects.htm

And Britta's Halloween site is great for the look, and for the food ideas. I took a few of hers, then adapted some others from various places.

http://www.britta.com/HW/index.html

I made one music disk, but we did MP3s, so we fit a buttload of songs on 1 disk. We had one DVD player in the living room showing a triple feature of "Night of the Living Dead" (the original of course) "House on Haunted Hill" with vincent Price, and uh....something else. I've forgotten. But we turned the sound down and had the mix disk playing.

Have you gotten a copy of "Halloween Hootenanny" yet? If not, get it! My favorite Halloween music! http://www.amazon.com/exec/obidos/ASIN/B00000DD28/qid%3D1119547172/sr%3D11-1/ref%3Dsr%5F11%5F1/104-1572470-3203115

It's gotten to the point where reprehensor now walks around the house singing "No Costume, No Candy" anytime of year. :D

PS- I'll be 39 next month. :-)

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[SiouxJ]

53. Thanks!

Your tombstones are nicer but I used the same materials. I got my insulation at Home Depot and they only had 1/2 inch. I had that stuff all over my office studio too! It's hard to sweep up because of the static cling. I'll spend more time on the font next time. They should be better when you consider I was a Graphic Design major.

My music was more on the subtle side. We played "figure out the Halloween connection in the song" all night. Most of my friends are really into music, so that was fun. I had things like "Ghost Town" by Cheap Trick, "Spiderwebs" by Joan Osbourne and "Bloodletting" by Concrete Blonde. You get the idea ;-) . I didn't even have "Monster Mash" on it, lol. I think I spent more time on the music than the decorations (I had 8 hours of music).

I had "Young Frankenstein," "Sleepy Hollow" and "Rocky Horror Picture Show" on the TV, with the sound turned down.

Thanks for the links. I'll check them out. Most of my food was out of Martha Stewart's magazine. Oh, I loved your "experiments" in the jars. I had severed fingers and eyeballs floating in jars and I stuck them in the medicine cabinet in the bathroom. People said the bathroom was the scariest room in the house, and at one time most of us were crammed in there looking at all the stuff, lol.

I kinda figured you were around my age because of the Sherwood Schwartz thing ;-) .

[fudge stripe cookays]

54. "Bloodletting"

is one of THE greatest songs for Halloween.

I got stuff like the Halloween soundtrack and this old 50s CD that had movie trailers on it between songs.

So after the "Halloween" voice track with the kids scaring the other kid about "The Boogey Man", I put "I'm Your Boogie Man" by KC and Sunshine Band.

Plus, there's a great song by Nick Cave ("Red Right Hand") on the X-Files soundtrack album.

And of course the Ramones "Pet Sematary," "Witchcraft" by Frank Sinatra, "Nightmares" by the Violent Femmes, "Eaten by the Monster of Love" by Sparks, "Voodoo Thing" by Colin James...you get the idea.

I called my masterpiece "Toccata in Terror." I have a couple of those Time-Life books on the supernatural, and one of them had this great photo of a castle on the moors shrouded in fog, so I used that for the cover.

I did the Martha Stewart food thing too. That one special issue, around '99 or 2000 was SO great! I saved the entire thing for the year I'd get to have a party, and used a bunch of the ideas! I just learned something very important last year...you have to REALLY CHILL the shortbread headstones! I'd never made shortbread before. Mine was a flop. The cake had to stand on its own.

I just got inspired for a new idea this year: buying an archive box of some sort with a glass cover and clasps on the edge-- paint it black, and put "Vampire Kit: Break glass in case of emergency" on the glass and filling it with lots of garlic, and a small wooden cross with pointed ends. Whaddya think?

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[SiouxJ]

55. I just checked out you links and as it turns out,

I used the second one for last year's party. I made the "witches fingers" cookies, but I added green food coloring. Can't believe she didn't think of that. Anyway, they came out kind of flat as she made a mistake and put down "baking powder" instead of "baking soda" (or the reverse, I forget). They still tasted good but were flattened out.

I had Boogie Man on my disc too! I'm gonna steal the Violent Femmes one for sure! I'm sure I have that already.


Let's see, here are some of the others:

"I Scare Myself" by Thomas Dolby
"Tombstone Blues" (Sheryl Crow's live version)
"Evil Woman" by ELO
"Rat Trap" by Boomtown Rats
"Feed My Frankenstein" by Alice Cooper
and of course "Frankenstein" by Edgar Winter
"Ways to be Wicked" by Lone Justice
"Cat People" by David Bowie
and his "Scary Monsters and Super Creeps"
"Black Magic Woman" by Santana
"Ghost Riders in the Sky" by Duane Eddy
"Wicked Ways" by Garbage
"Funeral for a Friend" by Elton John
serveral cuts off of "Nightmare before Christmas" and "Rocky Horror"

well and a lot more ;-)

I also got this great mix of soundtracks from horror flicks so I had the theme from Psycho and Halloween etc. I also used a lot of Rob Zombie's snippets that he puts between songs on his albums. Oh, and I tracked down the music from the Disneyland ride "The Haunted Mansion" and played that in the graveyard out front. I found one copy of it on Ebay and paid like $20 for the damn thing, but it was PERFECT for setting the mood out there.

[fudge stripe cookays]

48. Those Chicago people warned me about you.....

You and your wacky Andy Griffith fetish.
:spray:

See, it's really not as funny when you have to live with these people every day. When I went and saw "Greater Tuna" I felt sick to my stomach, not entertained.

Although I AM entertained by Craig Shoemaker's impressions of Don Knotts. Now HE'S funny.

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[Susang]

56. Ha!

I got drunk with Craig Shoemaker once back in the early eighties. When I was working at the Hilton Comedy Club in Kalamazoo during college and then again when I was working at Chaplins in Detroit.

Of course, we pretty much got drunk with all the comics back then. Ask me about Tim Allen sometime. ;-)

[fudge stripe cookays]

57. He kills me.

He is so damned funny. One of my favorites working now. Much funnier than that Tim Allen fella. ;-)

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[Susang]

58. Tim Allen isn't funny

But he did work the comedy clubs I bartended at, so there are stories to be told. ;-)

[preciousdove]

33. MRI picks up demylinization; Lyme demylinates

Shows up the same on MRI. Dr. Pat Coyle former Lyme Researcher current
MS Researcher is the most knowledgeable about a differential diagnosis but of course that is one doctor in one location.

Mylin is the sheath that covers the nerve. Lyme spirochetes are magnesium based and need magnesium to reproduce the best source of magnesium in the human body is Mylin.

A German scientist who moved to the US did research which was published in 1911 that showed that the damage from spirochete disease looks like MS. A study in 1953 confirmed that but there was a procedural error and the study was withdrawn and redone however it was a woman scientist who did it correctly but she was never able to publish. You have to take into account that STD's have been treated differently than other diseases forever and that it was a spirochete disease that was the outrageous Tuskegee Study started during the depression before antibiotics but continued without treatment for the test subject to 1970. Lyme is the modern day leprosy as far as how it is handled at the federal level. Even AIDS at least is acknowledged as dangerous. Lyme has been lied about at the Federal level since about 1993. Hard to detect, harder to treat in later stages. Mimics hundreds of other diseases and syndromes. Takes a real dedicated physician to determine if the demylinization is from Lyme or some other cause.

The MS society went with a viral model for many years in early research. They have done wonderful things however any such organization needs to focus about 50% on its own survival and the bigger it is the more of its emphasis is on the organizational survival. To find that cheap antibiotics were a cure would put them out of business very quickly so they just won't go there. My MS medicine costs $1200 a month, my antibiotics cost $12-100 a month.
Everything I get from the MS society is now sponsored by one of the expensive drugs.

Again only some MS is Lyme but if you treat Lyme with steroids what had appeared to be RRMS becomes PPMS and if you treat with one of the newer drugs it may temporarily give some relief but it does not treat the underlying disease that in the end will take decades off of ones life.

They told me that they could not tell if the very old spots demylinization in my brain was from the measles encyphilitis (I was blind and deaf for two weeks) or early MS.

[SiouxJ]

36. Very interesting. I did not realize Lyme demylinates as well

I fully believe the reason they have not found a "cure" for MS is because big pharma doesn't want to. Why cut off all that money coming in? They will continue to find better treatments, but I really don't think they will ever come out with a cure. When is the last time any disease was "cured"? Call me a pessimist but I really believe they just want to continue to offer expensive treatments for all these diseases, but never a cure. I don't think even if they accidentally stumbled upon one that they would put it out. They've been getting $900 a month out of my insurance co. for the last 5 years and I'm sure they don't want to cut that off. Multiply that by all of us who are on these meds and it becomes very difficult for them to want to find a cure. They've got us right where they want us and aren't likely to change that.

I'm sure there are a lot of people who are misdiagnosed but then again, I'm also sure what I have is MS. The steroids worked wonders for me, as do the "new" drugs. I basically went from probable PPMS to RRMS once I started the steroids and the MS meds, so I'm certain I was dx'd correctly. I recently read the radiologist report from the MRI they made the dx from and what it said was pretty scary. They said I was likely to decline very rapidly but in fact, I'm better now than I was then. I still have occasional symptoms and recently I've even acquired some new lesions, but I'm doing fantastic since starting the meds.

I'm curious what spinal tap results show for MS vs. Lyme?

Thanks for the info. It's very interesting.

[Susang]

22. Oh honey

Please get a second opinion, just to be safe, 'kay?

[mr blur]

24. So sorry, my friend...

but now you know what you're dealing with. And you CAN deal with it - we all do. And we're here for you if we can help.

[fudge stripe cookays]

26. Thanks blur.

Have any of you had to have the multi-day IV thing? Did you puff up like Barney the Dinosaur?

I just lost 30 pounds (few pounds gained back on vacation notwithstanding). Have to admit I'm a little nervous.

How was your mobility with the IV? Extremely limited, I'm figuring. Did it hurt? Or was it just your basic IV?

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[SiouxJ]

28. I didn't gain any weight

on the solu-medrol (the IV). This is the way it works - the first day, they will go slow with it and it could take a couple of hours. If you tolerate it well, then they will probably go faster the next time and it might only take an hour. It depends on who is going to be administering your IV as to how it will be handled. I had a service come out to the house (a nurse came) and she started the IV and monitored me the first time (blood pressure etc). They take the IV out but leave the catheter in your vein (when the IV is empty) and tape it up, so that the next day you can just get plugged right in without having to get stuck again. They will tell you to monitor the catheter and may have you flush it with saline to keep it clean until the next dose. The next day my nurse just came and started the IV, but showed me how to stop it and take it out so she didn't have to stick around. They usually will offer to stay or come back if you aren't comfortable doing that. This was the routine for the 3 days I was on it, until the last day when they took out the catheter after the final dosage.

It was really convenient having them come to the house but if that isn't available to you, you may have to go to a hospital or your doctor's office for the treatments. In any case, you will not be hooked up to the thing for days; just an hour or two each day. Some people have to go REALLY slow and it might take 3 hours but I don't think that is common.

You will probably get red in the face (solu-medrol face, lol). That is a common side effect. Don't worry about the weight gain too much. It wasn't a problem for me. If anything, you might put on a lb or two but you can work it off when you're done.

I didn't find it that uncomfortable except when the nurse didn't warm the saline solution one time before flushing. After that, she was careful to warm it in her hands as shooting cold saline in your vein can hurt, don't ya know.

[fudge stripe cookays]

30. Aha.

Well thanks for the info! That's good to know about the cold saline. Thanks!

I AM getting a service to come out to the house tomorrow, so thank goodness for that. The doctor made it sound like this was going to be an all-day thing; no driving or anything because this sucker was going to have to stay in a good long time (read: all day).

Maybe each doctor does it differently? I really appreciate all the insight, Sioux. Thanks from the newbie.

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[SiouxJ]

31. Not a problem

glad to help. After I posted that, I remembered that one nurse, instead of warming it, just went REAL slow and that was fine too. Some don't have the patience for warming it up a little. Just make sure to ask her to go slow if the bottle is fresh from the fridge.

You should be able to function normally, even with the catheter in (if they do leave it in). It was just a minor annoyance, like having a splint on a finger or something.

Like I said earlier, I rather enjoyed being on the steroids. I felt a little high and it was a nice break from the stress of finding out you have MS. I also felt positive because I was finally getting some help for my symptoms. I hope your experience goes as well :-) . I'll send you some positive vibes.