A recently diagnosed new member in Los Angeles

New members should feel free to introduce themselves here

A recently diagnosed new member in Los Angeles

Postby Longing4Cheese » Wed Sep 05, 2007 3:18 pm

Hello, fellow MSers. I am glad to have found this site. Ever since my first neurologist, who made a competent diagnosis BUT was a disaster in terms of patient care and communication, told me to "do my homework," I have been sifting through internet sites and books to understand the many layers of knowledge in which I suddenly need to become an expert. This site looks like a good one so far, and one that differs from the various nonprofit org sites.

I had had a very slowly progressing clumsiness in my right leg, which gradually became noticeable when dancing, and became a big problem in my karate classes. I knew nothing at all about MS. I had a theory that my leg problem, once I realized I had an ever-present problem that got more noticeable after doing some exercise (karate training, walking more than a mile), was a pinched nerve. I figured I'd work with a doctor to figure out which nerve it was, and work with a physical therapist to restore strength in the muscle groups that became atrophied as a result of the pinched nerve(s). When the neuro finished his clinical exam, he started talking about brain tumors, and ordered an MRI "stat." I could go that night or first thing in the morning. I took the appointment that night.

I showed up at a nearly deserted hospital in Burbank for the MRI, asked directions, wandered the halls until I found the MRI area. I went by myself as my fiancee was out of state, and I didn't tell her on the phone, because I didn't want to freak her out. The next morning my neuro called and said, "The good news is you don't have a brain tumor. But it looks like you have MS. Now, everybody's going to have a story about it, but don't listen to them, as every case is different, your course is unpredictable. Do your homework," or something very close to that. I spent the day at work, during a very busy crunch time (I work in television postproduction), wishing I had time to go online and learn WHAT THE F%$@ this "MS" was. The initial things I found were either frightening in their details or maddeningly vague about specifics. I picked up my fiancee from the airport that night, drove home, made her some food, and then had to interrupt her stories to tell her my news.

Since then we've ditched neuro #1 for being a terrible communicator with no interest or knowledge whatsoever in therapies beyond CRAB and had one consultation with Dr. Norman Namerow at UCLA, a neurologist nearing retirement who used to run the UCLA MS program. He knows people at both UCLA's and USC's MS clinics, and we're looking forward to some good referrals.

My heavy, clumsy leg has gotten a bit worse since early spring, and I definitely feel it worsened sharply after my lumbar puncture. I spent six days in bed with the Mother of All Headaches because Providence St. Josephs Hospital in Burbank has a policy of discharging LP patients right way, making them walk down the halls and through the lobby to their cars, rather than letting them lie down for a couple of hours to make sure the hole has healed. "Only ten percent of LP patients get the headache," they told us; apparently the bean counters figured it was cost-effective to make folks march out of there. I had to go in for not one but TWO epidural blood patches to stop my CSF leakage. As I was dehydrated and tenderized from a week in bed in pain (and in a heat wave), the blood patch procedure was miserable. Dr. Swank notes in his book that worsening of symptoms often follows LPs; I believe that happened to me.

Ah, Dr. Swank. I've been following the diet for about six or seven weeks. Mostly it's not too different from the way I ate before, but I did have to give up chocolate (except in mockingly small amounts), red meat, butter, and CHEESE... the chocolate and the cheese are the worst. I have to keep telling myself it could be a LOT LOT LOT LOT WORSE. I have read some people's descriptions of the side effects of the CRAB drugs, Copaxone, and even LDN, and I am horrified. I helped my dear uncle try to fight AIDS, and I remember his reactions to chemo and AZT. The drugs sound so nasty, they have a low efficacy rate, AND, since it's pretty apparent that I have PPMS, for which no drugs have been clinically shown to provide a benefit anyway, I am not going for any drugs at this time. And so avoiding some tasty foods is a small price to pay.

I fear that I sound unappreciative of the fact that I am still very functional, and that I don't go through the hardship of daily or 3x a week injections. I hope I am not unappreciative. I try to count my blessings, of which I have many.

I am dealing with having to abandon my profession, for which I trained many years (and for which I accrued enormous student loan debt), and the lifestyle changes and the bloody UNCERTAINTY that we all face certainly affects me. I can't run anymore, but I can walk today; I don't know if I will be able to walk in five years. We want to have a child; I have a fear of having to watch him or her play from a wheelchair, instead of being up and kicking a soccer ball around. For those readers with much more severe impairments, please don't judge me harshly -- I am still new to this life adjustment, and it is scary.

When my current show is over in a few days, I will be able to start reading the stack of books lent to us by my fiancee's colleague, who has MS. I thirst for information about how the disease works, what is known, what are the frontiers of scientific knowledge, and especially about PPMS.

Are there any people on this board who have PPMS and are taking a drug, or are doing the Swank diet or some other CAM approach?

Thank you for letting me introduce myself/rant/tell my short history. I'll be checking back as this journey proceeds.

--Mr. Longing4Cheese
User avatar
Longing4Cheese
Family Member
 
Posts: 51
Joined: Tue Sep 04, 2007 2:00 pm
Location: Redlands, California

Advertisement

Postby Loriyas » Wed Sep 05, 2007 3:44 pm

Hi Mr.Cheese!

I only have a minute right now but I wanted to welcome you. You will find this site to be a wealth of information and encouragement. Also, I hope you will find UCLA to be a good place to be. They are doing some exciting research there right now. I am looking forward to hearing about your impressions there. Good luck with your research!
Lori
Loriyas
Family Elder
 
Posts: 598
Joined: Sun Apr 02, 2006 2:00 pm
Location: Naples, FL

Postby Lyon » Wed Sep 05, 2007 3:55 pm

Hi --Mr. Longing4Cheese,
Welcome! I'm glad you found the site, although I'm sorry you have reason to be here.

Longing4Cheese wrote:to understand the many layers of knowledge
That is very valid, I like that term, although I'm not crazy about having to deal with all the different layers.

Bob
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 2:00 pm

Welcome, Cheese

Postby lyndacarol » Wed Sep 05, 2007 4:44 pm

Welcome, Mr. Cheese--I, too, am glad you found this site. You will find helpful people and information here (I have.). And you will be able to contribute much yourself.

Don't be too quick to abandon your career. I am optimistic that our solution will come soon. With complete recovery, too.

As a fellow reader, I was especially glad to see your paragraph on plans to read:
When my current show is over in a few days, I will be able to start reading the stack of books lent to us by my fiancee's colleague, who has MS. I thirst for information about how the disease works, what is known, what are the frontiers of scientific knowledge, and especially about PPMS.


I encourage you to start your own library of books on MS. I recommend Multiple Sclerosis: The History of a Disease by T. Jock Murray, OC, MD as a good beginning.
User avatar
lyndacarol
Family Elder
 
Posts: 2350
Joined: Thu Dec 22, 2005 3:00 pm

Re: Welcome, Cheese

Postby Lyon » Wed Sep 05, 2007 4:52 pm

lyndacarol wrote: I encourage you to start your own library of books on MS. I recommend Multiple Sclerosis: The History of a Disease by T. Jock Murray, OC, MD as a good beginning.
Wow buddy! I read that one too! It is a good book and often available online.

I read it with my university access but found out later that I could access it, by entering my driver's license number through the State of Michigan online library. Other states probably have something similar.

Good call Lynda. I think EVERYONE should read it.

Bob
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 2:00 pm

Postby daverestonvirginia » Thu Sep 06, 2007 5:02 am

Welcome, Sorry that you have had to join us here, but I have found a lot of very helpful information here and I am sure you will too.

I follow the Best Bet Diet and am taking Copaxone. I am doing very well no MS problems at all right now. I see you said you have been following the Swank Diet for several weeks now. I know when I started the Best Bet Diet after about 4 to 6 weeks I started to feel really bad, almost quit the diet, it turns out I think your body goes through a detox period, once I was through that I started to feel really good.

Well, good luck any questions just let us know. Dave
User avatar
daverestonvirginia
Family Elder
 
Posts: 182
Joined: Mon Apr 09, 2007 2:00 pm
Location: Reston, Virginia

Postby mom10789 » Thu Sep 06, 2007 9:42 am

i do swank go to their websight they have great recipes the cheese is rough but you can order some and it isn't too bad but no butter kills me
red meat is not too bad i don't really like it if you can't run swimming might help
and welcome, this is a scary time listen to your body.research everything,it is always fun to prove your doctors wrong
i'm in a wheelchair so i am one of those people,i'm 44 so i've had my kids,but my grandson thinks i'm the coolest grandma around he can read to me forever or turn the pages, i can play i spy forever,sing songs,re-teach me how to swim 'kick your feet mama,like this'
and laugh if something is funny live your life but respect the disease best of luck
shell
User avatar
mom10789
Family Elder
 
Posts: 145
Joined: Wed May 16, 2007 2:00 pm

Postby Longing4Cheese » Thu Sep 06, 2007 9:45 am

Wow! So many kind responses, and so quickly!
Thanks, everybody.

L4C :) :)
User avatar
Longing4Cheese
Family Member
 
Posts: 51
Joined: Tue Sep 04, 2007 2:00 pm
Location: Redlands, California

Postby mom10789 » Thu Sep 06, 2007 9:49 am

i forgot something
get a goodsupport system,even if you need to buy one, let people love you and help you
User avatar
mom10789
Family Elder
 
Posts: 145
Joined: Wed May 16, 2007 2:00 pm

Postby TwistedHelix » Fri Sep 07, 2007 5:49 am

Hello longing4cheese, and welcome to the club nobody wants to join!
Your experiences remind me of what happened to me over 20 years ago – not only are your symptoms very similar to how mine started, but sadly you've experience neurologists who are unsympathetic, unhelpful and downright obstructive – I thought they died out along with the dodo, but obviously I was wrong.
You're doing exactly the right thing by educating yourself and trying to make informed decisions: there's a huge amount of information to absorb, much of it frustratingly contradictory and inconclusive, and there's an even wider variety of opinion to try and sift through, so in the end you must follow your own heart and discover what suits your particular circumstances.
Please don't worry about sounding unappreciative or negative because you " only" have certain symptoms and you think they might sound minor compared to someone else's: the fear, worry and uncertainty that goes along with MS is something we all experience, regardless of what condition we're in, and we're all here to help you get through that.
And finally, as you progress in your understanding of this enormously complicated subject, I'm sure you will begin to realise how quickly knowledge is increasing about not only this disease, but the central nervous system in general, and why I think lyndacarol is right to say you have every reason to be optimistic about the future,

By the way, mom10789, I agree with you wholeheartedly about having a support network. I have a small but wonderful circle of friends, but I could always do with some more – can you tell me where I can go to buy some? :D
Dom
User avatar
TwistedHelix
Family Elder
 
Posts: 599
Joined: Fri Mar 25, 2005 3:00 pm
Location: Northamptonshire, England.

Postby mom10789 » Fri Sep 07, 2007 7:12 am

sorry Dom ya gotta look really hard in your neighbourhood
i have six psw people that come to see me each week
at first i would hardly let them help me, maybe a pride thing
now they are some of my favourite people
Pride can be a great thing but sometimes you gotta put it on the back burner
so good luck,Dom
shell
User avatar
mom10789
Family Elder
 
Posts: 145
Joined: Wed May 16, 2007 2:00 pm

Postby REDHAIRANDTEMPER » Fri Sep 07, 2007 7:59 am

welcome to the group....you will find that everyone here is great and very supportive

chris
waiting for answers
User avatar
REDHAIRANDTEMPER
Family Elder
 
Posts: 285
Joined: Mon Nov 07, 2005 3:00 pm
Location: wisconsin

Postby mom10789 » Fri Sep 07, 2007 8:11 am

hey DOM
i am just kidding
but i really hid for a while which was silly
User avatar
mom10789
Family Elder
 
Posts: 145
Joined: Wed May 16, 2007 2:00 pm

Postby AllyB » Fri Sep 07, 2007 1:11 pm

Hi L4C

Welcome to the site - I am sure you will find it very helpful and supportive. There are many very smart and well-educated (ms-wise anyway!) people here who have been a great help to me. It is not a club that anyone wants to belong to and I am sorry you find yourself here, but you are doing the only sensible thing you can when faced with this disease - inform yourself and get help in the best places possible! I am still trying to figure it out myself.....The "oldies" here (no offence, you know who you are) here are incredible, as I am sure you have noticed.

Domenico - how much are you offering? Being such a dinosaur, you should be able to offer some fossils as payment......

Seriously, I have a great support network around me, but no-one really knows how it feels, which is why I count this site as part of my support group! You guys "get it" and while it is important to be positive, we all get the blues now and then, and that is when information, experience of others, "informed" opinions, and yes, the emotional support that comes from participating in thisisms becomes a real antidote.
L4C - I truely hope that all goes well with you - I have two young children and possibly now have progressed to SPMS, but kids are adaptable, and your diagnosis should not prevent you from enjoying whatever life might bless you with - ms can rob you of so much. Also, try to stay active in your career for as long as you can, even if it is part time, or work from home on bad days etc - science may prove to be our friend eventually.

Would be interested in hearing about your experience at UCLA as although I see a neuro, he seems very like your old one, and in deepest, darkest Africa, we don't have much choice! I like to live vicariously through others' good experiences...

All the best
Al
User avatar
AllyB
Family Elder
 
Posts: 360
Joined: Sun Apr 22, 2007 2:00 pm

Postby AllyB » Fri Sep 07, 2007 1:12 pm

Sorry for duplicate post - the gremlins in the laptop got the better of me :twisted:
Last edited by AllyB on Sat Sep 08, 2007 11:37 am, edited 1 time in total.
Al
User avatar
AllyB
Family Elder
 
Posts: 360
Joined: Sun Apr 22, 2007 2:00 pm

Next

Return to Introductions

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service