Just joined

[Guest guest]

It has been a topic we discussed because candida is a big

creator of it. I put leaky gut into the archive search and many

posts popped up. It would be nice if the moderator of the list

could compile file information and add it to the file section

of the group. Then we would have a quick reference that isn't

mangled up with posts that are unrelated to the subject.

The search works but it leaves every other subject to sift through.

LIZ D

does this list have to do with Leaky Gut at all?

[Guest guest]

Hi Tami,

Welcome and sorry you're having pain. I can certainly identify with the weight gain due to pain stopping physical activity. I've been on a "diet" forEVER, it seems - at least I've contained my weight gain. I take it you're from a small town that doesn't have a huge amount of specialty doctors. I can certainly relate to that. I am curious in what you said about your daughter. Did she have fusion with a Harrington rod 3 years ago?

Have you started having any signs of flatback? I'm wondering if you are "pitch forward" and if that might have anything or everything to do with the arthritis in your knees. I'm no expert, by any means, just curious.

I hope you benefit by joining this group. There is a lot of support and information to be gained here.

G

[ ] Just joined

Hello, my name is Tami and I was invited to join by Peggy Greene. I had a nearly full spinal fusion with a harrington rod in 1984. Over the last 10 years or so, I have had increasing pain in my back and neck, and in the last few years, my knees. I have arthritis in my knees and neck/shoulders. I can barely make it up my own stairs and I I can't sit on the floor without needing help to get up. I put on weight over the last few years because excersize is very difficult. I have seen doctors here in my town and they don't know enough about spinal fusion let alone the aftermath of 25 years later. Also, my 16 year old daughter had the same surgery 3 years ago, I am hoping she does not have to go through what I have gone through for so many years.Tami

[Guest guest]

Hi, I don't live in a tiny town, about 2 hour north of Seattle, but have no idea who to contact. I also have numbness and pain in my left arm, especially when I am standing for a while. I don't lean over too much I guess but enough to cause pain in my shoulders. Yes I did say my daughter had the surgery 3 years ago, w/ 2 harrington rods. Thanks.

Tami

[ ] Just joined

Hello, my name is Tami and I was invited to join by Peggy Greene. I had a nearly full spinal fusion with a harrington rod in 1984. Over the last 10 years or so, I have had increasing pain in my back and neck, and in the last few years, my knees. I have arthritis in my knees and neck/shoulders. I can barely make it up my own stairs and I I can't sit on the floor without needing help to get up. I put on weight over the last few years because excersize is very difficult. I have seen doctors here in my town and they don't know enough about spinal fusion let alone the aftermath of 25 years later. Also, my 16 year old daughter had the same surgery 3 years ago, I am hoping she does not have to go through what I have gone through for so many years.Tami

[Guest guest]

Hey, Tami! Nice to meet you! I'm glad I ran across your post while looking for groups on joint pain (primarily fibromyalgia) on the Inspire site. You will get lots of help here! If you tell us where you are from, we can point you to revision specialists in your area but be warned, most of us have to travel out of state to find someone competent with the aftermath of Harrington rods.

Peggy

[ ] Just joined

Hello, my name is Tami and I was invited to join by Peggy Greene. I had a nearly full spinal fusion with a harrington rod in 1984. Over the last 10 years or so, I have had increasing pain in my back and neck, and in the last few years, my knees. I have arthritis in my knees and neck/shoulders. I can barely make it up my own stairs and I I can't sit on the floor without needing help to get up. I put on weight over the last few years because excersize is very difficult. I have seen doctors here in my town and they don't know enough about spinal fusion let alone the aftermath of 25 years later. Also, my 16 year old daughter had the same surgery 3 years ago, I am hoping she does not have to go through what I have gone through for so many years.Tami

[Guest guest]

Dear Tami,

With a quick check to the Scoliosis research society page, I found one doc that could be a starting point for an opinion. He handles the aging spine, and many of our problems, doesn't treat just kids. I also have a e-mail in to a group member who knows a lot of good doc's, and hopefully she will have an idea too for you. I don't know this doc, but at least he's close by, and at least on paper he sound as if he'll understand our problems. We also had a member who had surgery in Portland with a doctor there, Kay can you chime in and send his info? If you are surgical, then you can make the rounds and visit more doc's for more opinions, just a jumping off point.

Theodore A. Wagner MD

University of Washington

206-543-3690

hope this helps, and I'll do some more research tomorrow.

Colorado Springs

[ ] Just joined

Hello, my name is Tami and I was invited to join by Peggy Greene. I had a nearly full spinal fusion with a harrington rod in 1984. Over the last 10 years or so, I have had increasing pain in my back and neck, and in the last few years, my knees. I have arthritis in my knees and neck/shoulders. I can barely make it up my own stairs and I I can't sit on the floor without needing help to get up. I put on weight over the last few years because excersize is very difficult. I have seen doctors here in my town and they don't know enough about spinal fusion let alone the aftermath of 25 years later. Also, my 16 year old daughter had the same surgery 3 years ago, I am hoping she does not have to go through what I have gone through for so many years.Tami

[Guest guest]

Thank you for your help. The only thing is, Dr Wagner is the one who did my surgery in 1984 and I went and saw him about 12 years ago when I started to have problems, he only looked at my x-rays to see if the rod was still in place correctly and sent my on my way. That was the start of my frustration.

Tami

[ ] Just joined

Hello, my name is Tami and I was invited to join by Peggy Greene. I had a nearly full spinal fusion with a harrington rod in 1984. Over the last 10 years or so, I have had increasing pain in my back and neck, and in the last few years, my knees. I have arthritis in my knees and neck/shoulders. I can barely make it up my own stairs and I I can't sit on the floor without needing help to get up. I put on weight over the last few years because excersize is very difficult. I have seen doctors here in my town and they don't know enough about spinal fusion let alone the aftermath of 25 years later. Also, my 16 year old daughter had the same surgery 3 years ago, I am hoping she does not have to go through what I have gone through for so many years.Tami

[Guest guest]

Tami, Dr.

Flemming performed my revision surgery in Portland last February ‘07. I’m

nearly 14 months out and can’t say enough good things about him or the

hospital, my treatment, pain management, follow-up, etc. If you’re

interested in considering a visit with him for an assessment, I will be happy

to provide his contact information.

From:

[mailto: ] On Behalf Of Tami NEEVEL

Sent: Friday, March 28, 2008 9:17

AM

Subject: Re: [ ]

Just joined

Thank you for your help. The only thing is, Dr Wagner is the one who

did my surgery in 1984 and I went and saw him about 12 years ago when I started

to have problems, he only looked at my x-rays to see if the rod was still in

place correctly and sent my on my way. That was the start of my frustration.

Tami

[ ]

Just joined

Hello, my name is Tami and I was invited to join by

Peggy Greene. I had

a nearly full spinal fusion with a harrington rod in 1984. Over the

last 10 years or so, I have had increasing pain in my back and neck,

and in the last few years, my knees. I have arthritis in my knees and

neck/shoulders. I can barely make it up my own stairs and I I can't sit

on the floor without needing help to get up. I put on weight over the

last few years because excersize is very difficult. I have seen doctors

here in my town and they don't know enough about spinal fusion let

alone the aftermath of 25 years later.

Also, my 16 year old daughter had the same surgery 3 years ago, I am

hoping she does not have to go through what I have gone through for so

many years.

Tami

[Guest guest]

Thank you. Could you tell me what was involved in the revision surgery? What they did exactly? How long were you in the hospital, recovery time etc. I have 4 kids and even though I have good health insurance, I don't know how I would do with a long recovery/hospital stay since 3 of my kids are still young. Thanks.

Tami

[ ] Just joined

Hello, my name is Tami and I was invited to join by Peggy Greene. I had a nearly full spinal fusion with a harrington rod in 1984. Over the last 10 years or so, I have had increasing pain in my back and neck, and in the last few years, my knees. I have arthritis in my knees and neck/shoulders. I can barely make it up my own stairs and I I can't sit on the floor without needing help to get up. I put on weight over the last few years because excersize is very difficult. I have seen doctors here in my town and they don't know enough about spinal fusion let alone the aftermath of 25 years later. Also, my 16 year old daughter had the same surgery 3 years ago, I am hoping she does not have to go through what I have gone through for so many years.Tami

[Guest guest]

Tami, I had lived with Flatback Syndrome for several years—I just

didn’t know what it was. When I first saw Dr. Flemming, he immediately

identified my problem. I had been in incredible pain and had developed some

awful postural habits to try to stand up straight and/or to at least look

straight. Trying to do that and not hurt became an exercise in futility.

Prior to my Harrington rod surgery in 1983 in Houston, I had a pretty severe S curve and

life had become debilitating from relentless pain, muscle spasms, cramps etc. Following

scoliosis surgery, I wore the plaster cast (several of them) for nine months—pretty

much like everyone else.

I think I had about 7-10 good years before I began to have trouble

again. Over time, it just became impossible to live with and I finally went to

see the orthopedic surgeon who had done my shoulder surgery in 2003. He wanted

me to see Dr. Flemming for a second opinion. He was very reluctant to do the

surgery and I think secretly hoped Dr. Flemming would impress me and I’d

end up choosing him for the surgery, which as it happens, I did.

I had both anterior and posterior incisions in one event which

lasted about six ½ hours. Dr. Flemming usually has one or two other doctors

assisting him. He’s specializes in spinal deformity and is particularly

skilled in working with Flatback patients. They did the anterior incision

first. I have a somewhat diagonal incision between my naval and pubis. They

scraped bone from the pelvis (to be used in the lumbar area for fusion). They

removed the disks from L3-L4, L4-L5, and L5-S1, inserted PEEK cages (they’re

a hard non-metal material) with BMP fusing compound. Then they flipped me over,

removed the Harrington rod, and then used pedicle screws and rods to fuse the

lumbar vertebrae. I am now fused from T5 to S1. I was in recovery about an hour

and a half (I think).

I didn’t walk the first or second day; they just got me up to

sit on the side of the bed (day 1) and then to merely stand (day 2). Dr. Flemming

wanted me to rest at first more than anything else and he also wanted me to

feel no pain. I had a morphine drip into my spinal fluid for the first 16-20

hours post-op then a pump which allowed me to self-administer pain medication. Since

the anterior incision is the most uncomfortable one, Dr. Flemming attached a

morphine ball (I don’t know what it’s called) with a tube directly

into the incision. It has a timed release mechanism and by the end of the week,

when the worst part of the pain has passed, the morphine has run out and they

remove the collapsed ball—it’s empty. Truly, I’ve heard so

many folks complain about the pain from that incision but I was very fortunate to

only experience minor discomfort.

My husband told me I ran a low-grade fever the second night I was

in the hospital but by morning it had gone down and I was fine.

Subsequent to the morphine, they gave me Oxycodone (three every

three hours) and something else (can’t remember what it was but think it

was something for muscle spasms) for several days. Also gave me stool softeners

and laxatives. I went in on a Wednesday at 5:30 am for the surgery

(Valentine’s day 2007) and left to go home on Monday afternoon, the 19th.

Both physical therapists and occupational therapists visited me

twice daily in the hospital. By the third day, I was up and walking. On day

five, I was doing stairs. I didn’t go down them the regular way yet. I was

taught to face the wall, place both hands on the railing, and step down the

stairs sideways, taking each step one at a time.

Both PT and OT cleared me to go home with no further follow-up

because I was doing pretty well. A physical therapist did come to our home,

however, just to make sure all was okay. He inspected our house and went

through exercises and options with me and my husband. He said he wouldn’t

come back unless we needed him and if so, just call and he’d set

something up.

My surgery was at Providence

Medical Center

in Portland and

the nursing staff was wonderful. I can truly say my doctor, the hospital staff,

and my care was excellent.

My husband stayed with me in the hospital the week I was there. When

I went home, he stayed with me the first two and half weeks. After that, he had

to return to work and my son, who lives with us, looked after me during the day

and my husband resumed looking after me at night. Really, by that time, there

wasn’t much in the way of “looking after” that I needed except

that I couldn’t do any chores of course. And I didn’t try to shower

unless my husband was at home. We just both felt safer if he was there.

With four little ones at home, if you elect to proceed with this

surgery, you’ll need to enlist the help of husband, and/or family and

friends to help you through it. It’s no time to stand on pride or decide

you don’t want to be a bother. You’re going to need help and you and your little ones will need looking

after. I don’t know how small they are but even little ones like to help

take care of mommy. There are a number of things they can do—even the

very young—to make them feel a part of the process which also helps them

not feel so overwhelmed either. I imagine if one of your loved ones was facing

such a surgery and needed your help, you’d be ny-on-the-spot trying

to help any way you could. Well that’s how they feel about you, too.

Sometimes people need to be needed; they need to help. It’s a gift you

give them when you allow them to do that for you.

Anyway, it’s not a surgery that you’re going to pop

back up from after a week or so; you’re going to need to take your time

and let your body heal without making demands on it too early. It will also

forever change your body mechanics so it’s important to wrap your head

around that one. I will never be able to twist, bend from the waist, and do

some of the things I thought little of when I was younger. I will always have a

weight lifting restriction, I can’t sit any longer than an hour without

experiencing a lot of discomfort, have to use grabbers all the time, and I’ve

lost a great deal of flexibility.

But I wouldn’t trade what I got from the surgery for anything

I lost because of it.

I wish you the best in making your decision. If you’d like to

speak off-line about it further, please email me directly (kaystange@...) and I’ll

be glad to talk with you. Perhaps we could set up a time for a phone

conversation.

From:

[mailto: ] On Behalf Of Tami NEEVEL

Sent: Friday, March 28, 2008 2:06

PM

To:

Subject: Re: [ ]

Just joined

Thank you. Could you tell me what was involved in the revision surgery?

What they did exactly? How long were you in the hospital, recovery time etc. I

have 4 kids and even though I have good health insurance, I don't know how I

would do with a long recovery/hospital stay since 3 of my kids are still young.

Thanks.

Tami

[ ] Just joined

Hello, my

name is Tami and I was invited to join by Peggy Greene. I had

a nearly full spinal fusion with a harrington rod in 1984. Over the

last 10 years or so, I have had increasing pain in my back and neck,

and in the last few years, my knees. I have arthritis in my knees and

neck/shoulders. I can barely make it up my own stairs and I I can't sit

on the floor without needing help to get up. I put on weight over the

last few years because excersize is very difficult. I have seen doctors

here in my town and they don't know enough about spinal fusion let

alone the aftermath of 25 years later.

Also, my 16 year old daughter had the same surgery 3 years ago, I am

hoping she does not have to go through what I have gone through for so

many years.

Tami

[Guest guest]

Dear Tami,

I'm sorry that lead won't work out, also make me wonder how often the SRS list is updated, only showed three doc's in a city the size of Seatte, and two looked to only do work on children. Dr. Flemming in Portland is your next option, so glad Kay chimed in and helped you. I heard from , and she said she hadn't heard of any doc's in Seattle. Please know that a great deal of us need to travel to get to a qualified doc. The next option to you would be UCSF in San Francisco, we have had a few members that have had consults there and surgery. I'm hoping some of them will chime in and send along info. I do think I remember that they are quite busy there and appointments book out a good time into the future. So all in all Portland maybe a good bet for an intial consult, see just whats going on, and a least it drivable from Seattle. I'm a displaced Oregonian( in Colorado) and hope this idea works for you, Kay loves her doc and the care she got.

Colorado Springs

[ ] Just joined

Hello, my name is Tami and I was invited to join by Peggy Greene. I had a nearly full spinal fusion with a harrington rod in 1984. Over the last 10 years or so, I have had increasing pain in my back and neck, and in the last few years, my knees. I have arthritis in my knees and neck/shoulders. I can barely make it up my own stairs and I I can't sit on the floor without needing help to get up. I put on weight over the last few years because excersize is very difficult. I have seen doctors here in my town and they don't know enough about spinal fusion let alone the aftermath of 25 years later. Also, my 16 year old daughter had the same surgery 3 years ago, I am hoping she does not have to go through what I have gone through for so many years.Tami

[Guest guest]

Tami,

Hi! I had my revision last summer at age 31. I have Luque rods

instead of Harringtons. They were the " next generation " rods that were

curved to preserve lumbar lordosis, but they aren't preventing flatback

in all the patients. My revision was similar to many others here - had

part of my old rods & wires removed, they did an osteotomy, a few other

things that I can't remember (and can't currently find my surgical

report to refer to!), and extended my fusion down to the pelvis. I had

the surgery done in two stages. The first was posterior and the second

(a week later) was anterior. I was in the hospital for about 2 weeks,

then in a rehab hospital for another 4 weeks. I have another medical

condition which complicates things and unfortuantely now I am almost

fulltime in a wheelchair. But the revision surgery seems to have taken

care of most of the pain problems I was having before the surgery, and

when I am able to stand, I am more upright than I used to be, except

when I am tired I have to bend forward like I did pre-revision.

How old are your 4 kids? While I don't want to minimize the difficulty

of things if you have revision, your kids should be able to help

immensely and they'll likely learn a lot about being able to function

independently if you go through a surgery like this. When I had my

surgery last year, my kids were 2 and 3 1/2. It was hard on them to

have me gone from home for 6 weeks, but they understood that I was in

the hospital for the purpose of getting better. And because I've had

other physical problems, they are very independent for their ages.

They can get themselves breakfast in the mornings when I can't get out

of bed very easily (no, they don't pour milk - I'm not THAT crazy I

do that the night before for them), they both do all the potty stuff

independently, they pick up their toys, grab stuff for me, clean up

their messes, throw away garbage, etc. They've pretty much done that

stuff since they could walk. My mom cared for them during my surgery

and for one week after I came home. At about 7 weeks post-op I was

their fulltime caregiver again. If your youngest child is unable to

walk yet, I would hesitate to have the surgery until they are able to

do so. You will have lifting restrictions (every surgeon is different,

but I had 5lb weight limit for the first 3 months, then 20lbs

occasionally after that), and lifting a child out of a crib or to

change diapers would be impossible without adaptations. Adaptations

will get you around those things, but it will still be difficult. If

your kids are old enough to walk, follow simple directions, and

hopefully are potty trained, then caring for them after revision would

be much more doable. Can your older children help with the younger

ones? Definately enlist the help of friends & family (and make them

aware that their help will be needed for more than just a few weeks!) -

it will make your life & your kids' lives much easier.

>

> Thank you. Could you tell me what was involved in the revision

surgery? What they did exactly? How long were you in the hospital,

recovery time etc. I have 4 kids and even though I have good health

insurance, I don't know how I would do with a long recovery/hospital

stay since 3 of my kids are still young. Thanks.

> Tami

[Guest guest]

I'd like to throw my 2 cents worth in here too - mainly about enlisting help for after surgery....and it is in the form of a story (I'll make it a short story<g>)! It isn't about care I needed, but that of my aunt.

About 2002 - after first surgery, getting set up for second (laminectomies) and was still a lot more functional at that time...and some of my family members knew I was having problems, but not the extent, details, etc.

My aunt, who is now 94, never married, always worked, lives alone, now retired (of course!) had fallen in her home. Sadly it was a few days before anyone was aware of this happening. I live about 40 minutes away from her and hadn't seen or talked to her since 2000, when my mother passed away. I have a cousin that is my aunt's power of attorney, etc. who, with her husband, own a very successful business and though she has the freedom to come and go as she pleases, she is very much involved with the business and puts a lot of hours into it, and it being a Honda franchise, they have to do a lot of traveling. Having said all of that, here's the nitty gritty part. When it was discovered that my aunt had fallen (and had still been on the floor for about 3 days) - and was taken to the hospital, it was discovered that she had broken her hip, needed surgery, then would need to spend about 6 weeks in a rehabilitation facility. I was still unaware of all of this - I'm guilty of not keeping up with family like I should.

So, my cousin, who is her caretaker, had a previously planned trip - a convention, they were to receive some type of award, it had been planned and paid for way in advance, and she would be out of the country for about a week. Could she have cancelled her plans? yes - but, instead, developed a plan to involve family members to pitch in while she was gone. So, that's when I found out about the whole thing. My aunt had already had her surgery and was in the rehab center. Nikki (cousin) called me, told me all about what had happened and what all was going on and her plan of action. My part in helping out was to go there every other day after work to visit and take anything to her that she might need, and then I was to go the following Saturday morning. I also was to relay information from my visits to another cousin who was commissioned to be on duty the days I wasn't. Then, Nikki would get updates from the other cousin - and when she would return, she would address any concerns with the facility/level of care, etc. with the powers that be at the center.

I was glad to step up to the plate, though I had some concerns about my own durability with my own back problems, but knew that I was in much better shape than my aunt. As Nikki was explaining things, and especially when she brought it up about her trip - I immediately told her that there was no need, as far as I was concerned, for her to stay, while her husband went, when there was family that could certainly help out. I was impressed at how carefully she had everything planned out, she knew I worked during the day and didn't assign too much "duty" than I could handle. I recall her saying that she needed people she could depend on and that's why she commissioned me and the other cousin "who is actually a nurse, and married to one of my cousins). That was a form of flattery to me - and was glad to step up to the plate.

So, I wound up getting to know my aunt better than ever, we became good friends, did a lot of catch-up on all of my cousins, etc. through the other cousin, and my aunt eventualy returned home and is still doing fine. The best thing I got out of it was learning a lot about my family history - that my 6th grandfather fought in the Revolutionary War - so you just never know - - -- life is strange that way!

So, that's one way to do it - make your game plan and commission the family/friends. Of course, depending on your relationships with them, you might prefer to ask beforehand, but it is true - people (most) love to be needed and help out.

I hope you find the right doc and your quality of life gets vastly improved as you embark on your revision journey!

G

[ ] Re: Just joined

Tami,Hi! I had my revision last summer at age 31. I have Luque rods instead of Harringtons. They were the "next generation" rods that were curved to preserve lumbar lordosis, but they aren't preventing flatback in all the patients. My revision was similar to many others here - had part of my old rods & wires removed, they did an osteotomy, a few other things that I can't remember (and can't currently find my surgical report to refer to!), and extended my fusion down to the pelvis. I had the surgery done in two stages. The first was posterior and the second (a week later) was anterior. I was in the hospital for about 2 weeks, then in a rehab hospital for another 4 weeks. I have another medical condition which complicates things and unfortuantely now I am almost fulltime in a wheelchair. But the revision surgery seems to have taken care of most of the pain problems I was having before the surgery, and when I am able to stand, I am more upright than I used to be, except when I am tired I have to bend forward like I did pre-revision.How old are your 4 kids? While I don't want to minimize the difficulty of things if you have revision, your kids should be able to help immensely and they'll likely learn a lot about being able to function independently if you go through a surgery like this. When I had my surgery last year, my kids were 2 and 3 1/2. It was hard on them to have me gone from home for 6 weeks, but they understood that I was in the hospital for the purpose of getting better. And because I've had other physical problems, they are very independent for their ages. They can get themselves breakfast in the mornings when I can't get out of bed very easily (no, they don't pour milk - I'm not THAT crazy I do that the night before for them), they both do all the potty stuff independently, they pick up their toys, grab stuff for me, clean up their messes, throw away garbage, etc. They've pretty much done that stuff since they could walk. My mom cared for them during my surgery and for one week after I came home. At about 7 weeks post-op I was their fulltime caregiver again. If your youngest child is unable to walk yet, I would hesitate to have the surgery until they are able to do so. You will have lifting restrictions (every surgeon is different, but I had 5lb weight limit for the first 3 months, then 20lbs occasionally after that), and lifting a child out of a crib or to change diapers would be impossible without adaptations. Adaptations will get you around those things, but it will still be difficult. If your kids are old enough to walk, follow simple directions, and hopefully are potty trained, then caring for them after revision would be much more doable. Can your older children help with the younger ones? Definately enlist the help of friends & family (and make them aware that their help will be needed for more than just a few weeks!) - it will make your life & your kids' lives much easier.>> Thank you. Could you tell me what was involved in the revision surgery? What they did exactly? How long were you in the hospital, recovery time etc. I have 4 kids and even though I have good health insurance, I don't know how I would do with a long recovery/hospital stay since 3 of my kids are still young. Thanks.> Tami

[Guest guest]

Thank you everyone for all the information and stories, I am a bit overwhelmed, I guess. I need to research this, I am so sorry for all the pain you all have gone through. I don't know if I have flat back, I don't lean over very much, I just have a ton of pain in my lower back, shoulders, neck and knees. I had a severe s curve with twisting (90 degree by 60 degree) They fixed it to a point of still having a 35 degree lower curve and that went up to 45 after my first born - haven't actually checked since then. I don't know the exact locations since I don't have my old records but it is most of my back,just the very bottom and top are not fused. I will keep reading your posts, and thank you for letting me join.

Tami

[Guest guest]

Hi Tami,

Welcome to the group. I hope you learn lots here with us.

I know it seems hard, but I also hope and you are able to find a way to

travel to see the doctors mentioned here. Kays doctor in Portland or

the SF area are probably the direction you will look to first. I know

it can be overwhelming to think that you might have to do so, but many

of us have travelled to get top opinions and I think it has been worth

it. Many of us have gone on to have surgery at some distance from our

homes too. In this all...the bottom line is that none of what is going

on with your is likely to be an emergency...it sounds like you are

having a fairly typical slow decline...so you also really have all the

time in the world to decide what to do.

Take Care, Cam

[Guest guest]

Hi ,

Glad to see you posting. I think you've been pretty quiet lately so I've been wondering how you're feeling. I hope your MS has settled down.

Bonnie

[Guest guest]

Hi, I'm new to the group. I'm 65, I was diagnosed July 2008 with PPMS, 3 months

later the MS neuro changed it to PRMS, because a symptom had gone away and

progressive doesn't have relapses. By the time I was confirmed w/MS I suspected

this would be the dx. I had heard of LDN and asked my dr if he would prescribe

it as I didn't want to take one of the " heavier drugs. Particularly Interferon.

He prescribed 4.5 LDN and a new MRI in 3 months. At that time, he suggested

Copaxone, continuing with LDN. I've been on it for about a year. He also checked

my vit. D level; prescribed high dose (4 tablets, one a week. I forget but think

10,000 IU). I now take over the counter D3 2000 IU daily. Next time I order,

I'll order 4000 IU (I heard Dr Sanji said it'll help ward off the swine flu).

I take the amino acid SAM-e for depression and Fish Oil, a multi, and a dropper

of Colodial Silver every day or two.

I feel the LDN gave me a little better balance and 5 minutes warning that I have

to urinate. I had no warning before and got in the habit of going because I

stood up. I had no vivid dreams and don't know of any other result. However, the

ability to get up from my chair and answer the front door before heading to the

bathroom (for example) makes it worth taking.

I go on Medicare in February and will probably stop taking it as I am on limited

income and won't be able to pay the $90+ for 90 days worth, if it isn't covered.