MS Support Thread - Page 2 - Mothering Forums

Forum Jump: 
Reply
 
Thread Tools
#31 of 43 Old 04-08-2010, 11:47 AM
 
balancedmama's Avatar
 
Join Date: Feb 2007
Location: Boulder, CO
Posts: 1,001
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hi all, I'm glad you revived this thread. I think I developed MS after the birth of my second child but we're still in that limbo-land of no OFFICIAL diagnosis from the neuro, but everything points to it and most HCPs say "well you probably have it"

My main symptoms have been flareups of optic neuritis and fatigue which have been getting progressively worse - inability to drive or even shop in the grocery store when I'm having one (just because of the low vision).

These last few flareups have also brought a little spasticity and right-sided weakness.

I'm currently on a huge supplement regimen and I also went GF about two weeks ago. I thought I was feeling a lot better last week but now I'm not so sure. I'm out of town and pretty sure I"ve been glutened so it's impossible to tell what is what.

So is LDN okay for nursing? That is something I would consider. I am nursing my 22-month old.

SugarMama to Chatterbox Zoe (almost 4) and Locomotive Miles (2)
balancedmama is offline  
#32 of 43 Old 04-10-2010, 08:33 AM
 
Mom2M's Avatar
 
Join Date: Sep 2006
Location: PA
Posts: 1,614
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hi Balanced mama,
Sorry to hear about your optic neuritis, I don't have it and hope I never do! It must be scary to lose vision! Sometimes I have double vision but not often.

I know what you mean about the fatigue, it can be crushing. Have you tried ritalin or anything? Short acting ritalin doesn't really give much in the breastmilk. I may be starting that soon.

About the supplements, have you checked all of the with compatibility for breastfeeding? You could look at this http://neonatal.ttuhsc.edu/cgi-bin/d....cgi?pg=topics and read about different medications.

As far as LDN, I found this

No reports describing the use of naltrexone during human lactation have been located. Naltrexone and its metabolite, 6-b-naltrexol, are excreted into the milk of lactating rats (1). Because the molecular weight (about 378) is low enough, excretion into human breast milk should be expected. The effects of this exposure on a nursing infant are unknown, but there appears to be the potential for altering opioid receptors in the brain. In addition, based on studies in adults, baseline levels of some hormones of hypothalamic, pituitary, adrenal, and gonadal origin may also be altered (1).

taken from this http://drugsafetysite.com/naltrexone/

Hope you are having a good day!

Deb, Mom to Madeleine 8/2005 and Maia 11/2009 Nick: and Chris
Mom2M is offline  
#33 of 43 Old 04-20-2010, 08:02 AM
 
Peppermint's Avatar
 
Join Date: Feb 2003
Location: work-in-progress
Posts: 5,658
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
n/m. Sorry for the interruption

:Patty :fireman Catholic, intactalactivist, co-sleeping, GDing, HSing, no-vax Mama to .........................:..........hale:
Peppermint is offline  
#34 of 43 Old 05-18-2010, 10:17 PM
 
MaShroom's Avatar
 
Join Date: Jan 2003
Location: definitely to the left
Posts: 1,584
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Mom2M, not really sure how you interpreted what I said so let me clarify. My sister is pretty disgusted because all her neurologists want to talk about are drug therapies. They immediately dismiss everything that does not fit into their little narrow box. She and I agree that whole body/mind/life health is completely ignored by them and should not be. Because MS is such an enigma, she is very skeptical of the drugs, and where to even begin with the drug companies...? This is what happens when you had parents who were more likely to successfully treat childhood ailments with something picked out of the yard than something out of the medicine cabinet, but I digress.

As for CCSVI, trying to find the right people who want to talk about it is discouraging. Hopefully, that and LDN will gain credibility and accessibility in the medical industry.

I subbed here to see what is and what isn't working for people. My sister's fight is my fight. Frankly, I think your open ended response ("well...") is presuming to know more than you do about my life and struck me as snarky. I am bowing out of this thread now.

Best wishes to all of you.
MaShroom is offline  
#35 of 43 Old 05-18-2010, 10:20 PM
 
Purple*Lotus's Avatar
 
Join Date: Nov 2007
Location: Fluffyville
Posts: 5,680
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by CarrieMF View Post
I don't have MS but DH does. He was diagnosed in Jan/Feb 2003. He had 1 attack of optic neuritis that lasted a month & nothing since. He isn't on any meds. His neuro won't put him on anything until he has 2 attacks in 2 years.
I had optic neuritis but so far no lesions are showing on my brain. They said in my case it might have just been a fluke so I am hoping.

I am subbing to get more info. to all!

ribbonpurple.gif  "And the day came when the risk to remain tight in a bud was more than the risk it took to blossom." Anais Nin
   
Purple*Lotus is offline  
#36 of 43 Old 05-19-2010, 12:18 AM
 
Mom2M's Avatar
 
Join Date: Sep 2006
Location: PA
Posts: 1,614
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by MaShroom View Post
Mom2M, not really sure how you interpreted what I said so let me clarify. My sister is pretty disgusted because all her neurologists want to talk about are drug therapies. They immediately dismiss everything that does not fit into their little narrow box. She and I agree that whole body/mind/life health is completely ignored by them and should not be. Because MS is such an enigma, she is very skeptical of the drugs, and where to even begin with the drug companies...? This is what happens when you had parents who were more likely to successfully treat childhood ailments with something picked out of the yard than something out of the medicine cabinet, but I digress.

As for CCSVI, trying to find the right people who want to talk about it is discouraging. Hopefully, that and LDN will gain credibility and accessibility in the medical industry.

I subbed here to see what is and what isn't working for people. My sister's fight is my fight. Frankly, I think your open ended response ("well...") is presuming to know more than you do about my life and struck me as snarky. I am bowing out of this thread now.

Best wishes to all of you.
Hi MaShroom,

I'm very sorry I gave the impression that I thought I knew more, etc... I truly didn't mean it but I can see how it came off that way.

I took what you said the wrong way, I think.
It seemed very bluntly saying that there was no benefit to the things I was talking about and assumed that CCSVI had not even been a consideration instead of asking if it was or asking about the natural wellness things you mention.
I'm horribly sorry that your sister is facing this too. One thing I am very grateful for is that no one else in my family has it.

One of the people I know online told me a story one time when I was deciding whether I should take a disease modifying drug. He told me that he and his wife both had MS when they got married. She got into the trial for the first drug and he didn't. They both were doing fine and then it was available to him and he opted out because he felt good. 10 years later, his wife was still doing well and he is effectively a quad. It scared me and I never forgot it.

I don't have the experience of my neuro. forcing drugs on me either like your sister. Actually it was the opposite. I was doing so bad that they really didn't think a disease modifying drug was going to help and only gave me steroids. They did recommend the yoga and traeger therapy though and I'm very thankful to them for that.
I asked to try Copaxone after I talked to my friend and I'm very glad it has helped.

I think MS has different causes and different "cures" for each individual, I don't think it is a cut and dried disease.

I do believe very much that diet and other things play a huge role. I try to follow the Swank MS diet and have increased my Vitamin D (thanks to info here).
Yoga, Traeger therapy and meditation have made a big difference.
I didn't know you were interested in anything like that because you really didn't say much.

I hope your sister is doing well.

Bunnyflakes, I hope your eyesight is better. That must be very scary. I've never had optic neuritis.

Deb, Mom to Madeleine 8/2005 and Maia 11/2009 Nick: and Chris
Mom2M is offline  
#37 of 43 Old 05-19-2010, 12:21 AM
 
Purple*Lotus's Avatar
 
Join Date: Nov 2007
Location: Fluffyville
Posts: 5,680
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Mom2M View Post

Bunnyflakes, I hope your eyesight is better. That must be very scary. I've never had optic neuritis.
It is a lot better, thank you Not 100%, but unless I cover my other eye, I really don't even notice it. I did very well on my last eye exam with it.

ribbonpurple.gif  "And the day came when the risk to remain tight in a bud was more than the risk it took to blossom." Anais Nin
   
Purple*Lotus is offline  
#38 of 43 Old 05-20-2010, 12:20 AM
 
MaShroom's Avatar
 
Join Date: Jan 2003
Location: definitely to the left
Posts: 1,584
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Mom2M, thank you very much for your response and I'm sorry if I came off the wrong way. I think when I posted the first time I was feeling pretty discouraged and was too brief. I meant absolutely no ill intent toward you! So much is lost in internet conversations, too. And honestly, last night I was hormonal, sensitive, and weepy anyway - I overreacted. I'm sorry.

You are completely right on when you say this is not a cut and dried disease! It is very much the opposite and it is so overwhelming trying to figure out what to do now to keep it from progressing.

My sis is doing craniosacral therapy weekly, yoga, and regular colon cleansing, but nothing else. I'm worried for her because I feel like she has given up in some ways. She thinks the Copaxone was doing nothing for her. That's the problem, we don't know, but she didn't give it a chance either. I will share with her the story of your friend. I think she needs to hear it. Of course we just want to do the right thing, but it's hard to know what that is I guess. I understand where she was coming from though. After her dx it was surreal how the pharmaceutical reps descended on her, each trying to sell her on their product. It made her angry. Compassion didn't even enter into it, they were just vying for her business. IMHO, it's more of a societal problem. Disease is an industry to a lot of people. What these people lose sight of are the real lives and struggles of the people fighting these diseases every single day. Without that insight and understanding they might as well be selling used cars. Sorry, I tend to rant about this.

I'm really glad Copaxone is working for you. That gives me hope - maybe it'll rub off on my sister. I feel like she needs it.

Thank you for taking the time to share with me what you have.

With warm regards,
Keri
MaShroom is offline  
#39 of 43 Old 05-22-2010, 12:56 AM
 
Mom2M's Avatar
 
Join Date: Sep 2006
Location: PA
Posts: 1,614
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hi Keri,

Don't worry, it is a tough thing to go through and causes all kinds of raw emotions, I wish you and your sister did not have to deal with it!

Doing a shot every day and having no idea if it is doing any good is pretty much what it is and it does feel useless sometimes and a waste of time and money.
With Copaxone, it takes about 7-9 months to notice anything. I guess that's because it has to build up in your blood. When I first started it, I was disappointed because it wasn't the wonder drug I wanted it to be, just a lot of skin reactions and a couple of the IPIR reactions (very scary). Then about 6 months into it, I noticed a change in how I was walking and really started to see a lot more improvement by the 9th month. No, it wasn't this amazing "cure" but it was enough to make me keep going.

Craniosacral therapy and yoga are 2 of the best things she can do, I think. I really credit my yoga practice for my balance improving.

The pharmacies that distribute the injectable drugs are almost as bad as the drug companies! The one I used to have would call me to arrange for delivery of the next month supply if I hadn't called them by the right date.

There was a period where no matter what kind of reminders I set up I kept forgetting to do the shots, I think over a couple months I had missed probably 20, then a few every other week or so for a couple more months. They flipped out and I had to talk to their pharmacist for counseling, etc...I just laughed at them, lol and told them that.

I'm still ahead about 3 weeks in my supply and I just keep it that way in case anything happens with my insurance or something.

The new company I have calls 5-6 times over a few days and then sends me a letter if I don't call back soon enough! They must make a lot of money too! It's just business for them.

The drug reps really are like vultures, though.

If there are any NMSS meetings around your area or seminars, I really recommend going and meeting other people with MS or caregivers for people with MS. The NMSS funds some really great stuff so that we can attend classes for free or at a very low cost. In my area they have yoga, exercise and art classes plus the free workshops. I've made some wonderful friends online too.

MS is scary but there are ways to live with it that make it easier and I think it can be helpful to use both natural methods and the drugs available to manage it.

Hope you are having a good day.

Deb

Deb, Mom to Madeleine 8/2005 and Maia 11/2009 Nick: and Chris
Mom2M is offline  
#40 of 43 Old 06-06-2010, 04:51 AM
 
Fletchersmama's Avatar
 
Join Date: May 2003
Location: Atascadero, CA
Posts: 295
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
i don't have MS, but my dh does. he was dx'd Jan. of 2001.
anyone NOT using the interferon drugs? dh has gone through two periods of taking avonex, but always felt worse on them then off.
Acupuncture has helped, but he does not go regularly because he refuses to spend the money on it.
We no longer have insurance, he has been on disability for almost two years now, permanently disabled.

Today he started a new round of Solumedrol, his fourth in nine years. Unfortunately we no longer have private insurance, he's got medical or medicare (i can't ever remember which) that only pays a portion and we're about to deplete our savings for this treatment and for another MRI his doctor has ordered.

I'm rambling, it's been a while since I've looked at the forum and tried to find some support for what we are going through. It's nice to find others in our situation.

-Sara, working Mom to Fletcher (2003) and Magnolia (2008):, wife to Jim the best SAHD in the world (1999) NVC has changed my life
Fletchersmama is offline  
#41 of 43 Old 06-21-2010, 11:22 PM
 
oikophile's Avatar
 
Join Date: Jan 2009
Posts: 142
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hello all,

I was really glad to see this thread. I am going in tomorrow for my third MRI in two years--that's how long I have had "possible MS." I had one episode seven years ago, when I was in my early twenties--lingering numbness like my leg and foot were asleep, but for days on end. I didn't think much of it then, and an MRI didn't find anything abnormal (although I didn't get to have the MRI done until after the symptoms had subsided). Since then, I have had more minor parasthesia occasionally. Most recently, I started experiencing Lhermitte's sign. The neuro wants a total brain/cervical/thoracic spine MRI, and I'm hoping that will help some with a diagnosis. I have declined the lumbar puncture in the past, and I still hope I don't have to do it. Last time (two years ago) there were lesions on the brain MRI but none on the spine, and my blood tests were normal.

My best friend has MS and she thinks my neuro has been too conservative and I should have been on meds this whole time to prevent the disease from getting worse. I am a little skeptical of aggressive treatment, but I do feel impatient to know what is going on and what I should be doing about it.

I am in my late twenties now and I am curious to know what the implications would be if I wanted to have a biological child (I currently have one stepchild). I am not dead-set on it (I have always been drawn toward adopting regardless of my own physical condition) but it is an experience I think I'd like to have, all other things being equal. Did anyone here have serious relapses post-pregnancy? I especially worry about fatigue, because I have some bad fatigue already and I'm not even a regular parent.

Thanks for reading and sharing your experiences.
oikophile is offline  
#42 of 43 Old 06-22-2010, 02:17 AM
 
Mom2M's Avatar
 
Join Date: Sep 2006
Location: PA
Posts: 1,614
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hi,
I'm so sorry to hear you are having problems. You have multiple brain lesions? If so, I think your neuro is too conservative also! Spinal lesions are much harder to see even on MRI's but brain lesions definitely fit the criteria for a dx. Latest thought is that the LP is really not necessary for a dx if you have lesions and clinical signs.

As far as pregnancy and MS, I wish I could just keep having babies! Seriously, I have wonderful remissions during pregnancy and for about a year or so afterward.
I have heard of relapses after delivery, however, I believe that most of those occur when the patient is not breastfeeding. My dr. thinks that the breastfeeding hormones keep me in remission.
There are trials going on right now for taking hormone pills along with copaxone and if I relapse I am going to ask for the estriol.

Fletchersmama, I'm so sorry to hear about your DH. I've had lots of IV steroid treatments and although they can work wonders, they are tough on your body long term.
After 2 years on SSDI, he will be qualified for Medicare and that will cover these costs much better. You'll get the info in the mail when he is eligible.

As far as doing the MRI's now, either he could ask the dr to wait till he gets Medicare or ask for help through the NMSS. They have a program where they help patients with MS pay for MRI's.

I do NOT use interferon drugs but I do take a disease modifying drug called copaxone. It doesn't have the side effects like the interferons and I have had very good results from it.

Deb, Mom to Madeleine 8/2005 and Maia 11/2009 Nick: and Chris
Mom2M is offline  
#43 of 43 Old 06-22-2010, 12:02 PM
 
oikophile's Avatar
 
Join Date: Jan 2009
Posts: 142
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Deb, thanks for your response and for sharing how positive your pregnancy experiences have been for your MS! From what I understand, my neuro wants to totally rule out other demyelinating diseases. I actually dropped the ball on getting my last follow-up MRI in a timely manner, so it's taken longer than it should have. So we are rechecking blood tests as well. I think with the new clinical symptoms, though, MS is looking more and more probable.

I will post back here once I've had my next follow-up. I was hoping to find an MS thread on MDC, because I know people here are more likely to have perspectives on holistic treatment and self-care as well as the usual medical treatments for MS. Thanks again.
oikophile is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off