MS Support Thread

[poetesss]

.... does one exist?

I've just developed MS after the birth of my 2nd. Just got my diagnosis, not on any meds yet.

Anyone else out there want to chat?

[Mom2M]

Wow, never saw one here and would love to chat. Not too many Moms on my MS boards with little kids!

I have had MS (dx) since 2003 and am currently 22 weeks pregnant and on Copaxone.

I LOVE Copaxone. It is every day so that stinks but the side effects are very few and I have had no serious relapses for over a year, a miracle for me.

How are you doing?

Deb

[CarrieMF]

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.

[poetesss]

Originally Posted by Mom2M

Wow, never saw one here and would love to chat. Not too many Moms on my MS boards with little kids!

I have had MS (dx) since 2003 and am currently 22 weeks pregnant and on Copaxone.

Yeah, same here, haven't seen too many ppl on other boards with small children. Then again, with small kids and MS, who has time to post?

I'm glad copaxone is working for you... I thought it was discontinued during pregnancy though, however I do remember dr Hale listing it as class C as far as I remember.

I'm considering LDN as a primary med and then copaxone possibly to be added in later. Have to decide whether to go for #3 sooner or later though cos it will affect when I start copaxone, no sense in starting it for a few months then stopping.

Oh and Carrie--as far as I know, the CRAB drugs are ok for use after a clinically isolated syndrome, if your dh wanted to go that route.... I personally would wait for a definite dx, but they are technically approved for treatment after CIS to delay onset of MS. I'm having a hard time wrapping my head around starting them even after a definite diagnosis though!

[CarrieMF]

Originally Posted by poetesss

Yeah, same here, haven't seen too many ppl on other boards with small children. Then again, with small kids and MS, who has time to post?

I'm glad copaxone is working for you... I thought it was discontinued during pregnancy though, however I do remember dr Hale listing it as class C as far as I remember.

I'm considering LDN as a primary med and then copaxone possibly to be added in later. Have to decide whether to go for #3 sooner or later though cos it will affect when I start copaxone, no sense in starting it for a few months then stopping.

Oh and Carrie--as far as I know, the CRAB drugs are ok for use after a clinically isolated syndrome, if your dh wanted to go that route.... I personally would wait for a definite dx, but they are technically approved for treatment after CIS to delay onset of MS. I'm having a hard time wrapping my head around starting them even after a definite diagnosis though!

Dh has a definite dx, a week after the ON started he had a MRI which showed the lesions.

[kiara7]

I've been thinking about starting a new support thread for MS in the last couple of days. You beat me to it.

I was dx'ed in 2007. About 6 mos. prior I got a flu shot . I strongly believe that the flu shot activated my faulty immune system as some scientists suggest. My first MS issues were numbness around abdomen, some slurred speach. Within a month of dx, I had a second relapse which was horrible. Brain stem was affected, so balance, walking, hands, eyes - it was everything.

I promptly got pg and of course the pregnancy was awesome. I had my first relapse when my son was 7 mos. old - optic neuritis. Now, 3 mos. later I'm coming off of Solumedrol again with arm, shoulder, hand numbness.

I just got my titration pack for Rebif. I considered Betaseron but decided against it as it isn't premixed, Copaxone is daily and I just didn't want that many injections. Hopefully, Rebif will work or I'll have to go with Copaxone I guess.

Thank God for insurance, those drugs are expensive!

Has anyone had any luck with natural supplements, acupuncture?

[Mom2M]

Poetess, I was surprised that they told me to continue but I did research on it and agreed that it would be best to continue. I didn't start copaxone until 11/07 and after about 8 months on it, I have had no relapses!
Before C, I was having major relapses about every 3-4 months that required IV steroids just to be able to walk again. It's been great to put the w/c away!!

Kiara, I completely agree on the flu vaccine, I will never have it again!

My MS & vaccine history...I had a hep B vaccine series when I became an EMT, geez, I guess 15 years ago! A few months after the second shot, I experienced what I now know was most likely my 1st MS exacerbation, my right side went numb and I lost strength in it. I also had optic neuritis. It cleared up after a couple months and then over the years between then and 2002, periodically I would have a week or so here and there of symptoms like numbness and weakness in my leg but I blew it off every time because it always went away.

In 2002, I had started working for a company that gave away free flu shots and got my first one of my life. 1 month later, my right side went numb again and it progressed from there with balance issues and weakness until I was using an electric w/c about 1 year later.

I will never be vaccinated for anything again!!! I have such an overactive immune system that I never get sick, even on steroids, though I did just get the swine flu, I think because pregnancy really suppresses it.
I think vaccines can really affect someone with an overactive immune system in a bad way.

As far as natural treatments...yoga has been #1 for me!!! I credit my yoga practice for first getting me out of the w/c. I had craniosacral therapy about a year later which improved things even more .

I had my daughter in 2005 and an amazing remission for a a little over a year afterward where I trained for and ran a marathon.
Then I crashed and started the frequent relapses/steroids until starting copaxone. But in between relapses, every possible time I could, I exercised very hard and continued yoga. I think that helps maintain muscle and create new neural connections.
Yoga has continued to improve my physical and mental abilities and now that I'm pregnant again (HUGE shock!), I have started to feel relief of symptoms in a major way again.

I also started 2000 iu of vitamin D and increased to 3000 mg flaxseed oil at the advice of my dr.

I have considered LDN too. But I chose copaxone because I believe it is the most benign disease modifying drug and I have seen some studies that show it to be extremely beneficial for cognitive protection and improvement.
Plus, you can take LDN with it so I can start that sometime if I want.

Well, gotta go for now,

Deb

[poetesss]

Originally Posted by Mom2M

I have considered LDN too. But I chose copaxone because I believe it is the most benign disease modifying drug and I have seen some studies that show it to be extremely beneficial for cognitive protection and improvement.

ooh, please share...I would love to see this info!

I'm so glad the copaxone has worked so well! I can't imagine having so many intense relapses--I had one mild one plus two big ones within 6 months before being diagnosed. The first, hand tingling, they kept telling me was carpal tunnel syndrome and I knew they were wrong, but never in my wildest dreams thought it would be MS. Oh well, here I am.

I'm excited because I'm seeing a new neuro in July who does osteopathic adjustments, acupuncture, and rx's LDN. I just hope he will prescribe it for me. I tried acupuncture when I was on the tail end of a relapse (not knowing then that it was a relapse) from a supposedly really good acupuncturist, but it didn't do anything for the residual numbness in my feet.

[kiara7]

Bump

and what is LDN?

[poetesss]

Hi Kiara,

Hope you are doing well and the meds work for you!

LDN is Low Dose Naltrexone. It's an ultra low dose of a drug that is an opiate inhibitor, which in large doses is used to treat opiate dependency. In small (up to 4.5 mg) doses it seems to stimulate endorphin production and up-regulate the immune system. It was chanced upon by a physician who used it with great success on his patients with HIV, Cancer, and MS. With MS he found that it stopped disease progression in progressive patients and greatly reduced relapse rates (I believe the numbers are around 1% of his patients ever relapsing while on it).

the news spread to a few other physicians close to him who are using it and promoting it and it has spread since then. Because it is used "off label" it is not something patients are told about as a matter of routine. In fact, many neurologists haven't even heard of it (mine has not).

There are some phase I, II, and recently a phase III trial, yet still no formal FDA labeling for its use in MS (it would take millions in funding to get to that point, and there are no willing corporate sponsors since it's an out-of-patent, cheap drug). However, because the response by patients has been overwhelmingly positive, they are really advocating for further studies and spreading the word.

Here are some links--

http://ms.about.com/od/treatments/a/LDN_overview.htm

http://www.ldninfo.org/

http://www.ldners.org/

[Mom2M]

I meant to get back here earlier but geez, it was hot today and hit me like a ton of bricks! My legs turned to lead but I did get to the gym to lift at least!

I cannot find the article on Copaxone and cognitive stuff! I'm pretty sure I know the forum I read it on though so I'll check there when I have time.

poetess, that sounds like a great neuro!! I really like mine too. She doesn't do osteopathic adjustments and accupuncture but she's pretty great though in considering the whole person, not just the MS.

I've been nervous about asking for LDN though, I don't know why.

The other exciting trial going on right now is with estriol and copaxone! I am extremely interested in that and if things go the way they did last pregnancy with a remission, I am really going to find out how to get it.

How are you doing now, Kiara? Do you still have balance issues? I think that's one of the worst things...people used to think I looked drunk

Well, time to get to bed, I just did my shot while I was writing!

Deb

[kiara7]

Poetess,

thanks for the info on LDN. I haven't heard of it, but I haven't done much research in awhile. I doubt my doc will rx it, she didn't even want to listen about alpha lipoic acid when I brought it up awhile back .

Do you guys see docs that specialize in MS or just general neuros?

Anyways, my Rebif nurse is coming over tomorrow, we'll see how it goes. I hope the injections are not too bad and neither are the side effects. Wish me luck!

[luminesce]

I have MS. Was diagnosed the summer of 2005. I have not had another full blown relapse but have a definite diagnosis due to a follow-up MRI in 2006 right before I got pregnant. I now have multiple lesions in my cervical cord and a few in my brain. The only real symptom I battle is fatigue and the occasional flare-up of pre-existing numbness/tingling and L'hermitte's. I usually go for long periods feeling fine but there are days I feel totally wiped out. But I have a toddler, am still breastfeeding and currently going through a really rough time with potty training problems - so a lack of energy is also probably a bit normal.

I followed the Swank diet religiously for a year. I modified it during pregnancy to include more fat (the allowed kinds.) Since giving birth, I added back cheese and some dairy fat because breastfeeding was causing me to lose too much weight. I still don't eat red meat. I also cut out MSG. I don't eat any artificial colors, preservatives, artificial sweeteners, etc. Those can all exacerbate neurological issues.

I think that pregnancy, breastfeeding and the diet have probably all helped me not to have a relapse but the #1 thing I did was correct my severe Vitamin D deficiency. Please, please, please, if you have MS, get your levels checked. I'm taking 4,000 IU per day and with even that amount, my levels have been slow to rise. There is an at-home test kit by ZRT labs mentioned by www.vitamindcouncil.org. This is also a great video on Vitamin D: http://www.uvadvantage.org/portals/0/pres/ I've been following scientific research closely on Vitamin D and it is highly suspected to be one of the underlying triggers of MS; it might quite possibly be the most important one. Doctors have long known that the closer you live to the equator, the less likely you are to get MS. Now, research is finally connecting it to sunlight/Vitamin D. They recently discovered several genetic differences in people with MS that help regulate immune system function. Guess what they have that others don't? Vitamin D receptors. Given how long it has taken my levels to rise, I suspect that I may need more Vitamin D for my immune system to function and may not be able to metabolize it efficiently. I have talked to one other person with MS who had the same experience. Her neurologist decided to give her Vitamin D shots to get her levels up when supplements just weren't working.

The research on Vitamin D and MS is extensive. A couple of these links are news stories, not studies, so the info is skewed a little at times. I just pulled these quickly from a Google search but the underlying research is easy enough to find.

http://www.webmd.com/multiple-sclero...ut-ms-relapses
http://health.usnews.com/articles/he...risk-gene.html
http://www.ncbi.nlm.nih.gov/pubmed/18289005?ordinalpos=1&itool=EntrezSystem2.PEntrez. Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveyPanel.Pu bmed_Discovery_RA&linkpos=3&log$=relatedreviews&lo gdbfrom=pubmed

BTW, I don't currently take any medications for MS. I read a study by the Mayo Clinic that said a 5 year approach was reasonable before starting drug therapy because disability at 5 years was a good predictor of disability at 10 years and so-forth. (http://www.medicalnewstoday.com/articles/12671.php) The drugs are expensive, a pain to give and can make you feel like crap. I'm glad I waited but I know this isn't for everyone. Some studies show that early treatment may help prevent damage from accumulating so it is something you have to consider carefully. After reviewing the studies I decided to wait. Based on the research I've done, if I do get to where I need/want to take some form of medication, I will try LDN before anything else. As for natural supplements, I did take ALA a little while before trying to get pregnant. If I weren't breastfeeding I might look into glucosamine & EPO.

(Oh and BTW, a study was just published showing that breastfeeding was MORE protective against relapses than drugs. They were recommending that doctors NOT encourage women to take drugs in lieu of BFing! http://www.medpagetoday.com/Neurolog...clerosis/14601)

[luminesce]

Originally Posted by Mom2M

I also started 2000 iu of vitamin D and increased to 3000 mg flaxseed oil at the advice of my dr.

Have you actually had your Vitamin D levels checked? 2,000 IU wasn't anywhere near enough for me. My levels were still only 19 after supplementing a while! I've took 4,000 IU a day and my level only raised to about 40 after eight months. Your levels should be at least 50 and probably more like 70-80.

[poetesss]

Originally Posted by serenitii

Have you actually had your Vitamin D levels checked? 2,000 IU wasn't anywhere near enough for me. My levels were still only 19 after supplementing a while! I've took 4,000 IU a day and my level only raised to about 40 after eight months. Your levels should be at least 50 and probably more like 70-80.

Hi serenitii!

Thanks for chiming in! I am so grateful that you linked to that Mayo Clinic research...I was with a horrible neurologist who wanted me on the DMDs within a week of diagnosis and did not acknowledge my concern that I could possibly have a benign disease course. The reality is that, if I start on DMDs, no one will know whether it is helping me because my individual disease course is as of yet unknown.

I am seeing a new neuro tomorrow and I will definitely discuss the mayo clinic info with him. I also have a decision-making sheet from the university of michigan here:


You mentioned that with 4,000 IUs it took a while for your levels to go up. Dr's routinely prescribe the 50,000 IU pills to get levels up quickly. I haven't done that, but I am currently taking 6,000-8,000 IUs a day. I will consider taking higher levels if my recent blood test is not showing a good increase. Here's an interesting MS and vit. D study, which showed a reduction in relapse rate. However, participants were taking very high D doses:

High Doses of Vitamin D Cut MS Relapses

[poetesss]

Originally Posted by kiara7

Poetess,

thanks for the info on LDN. I haven't heard of it, but I haven't done much research in awhile. I doubt my doc will rx it, she didn't even want to listen about alpha lipoic acid when I brought it up awhile back .

Do you guys see docs that specialize in MS or just general neuros?

Anyways, my Rebif nurse is coming over tomorrow, we'll see how it goes. I hope the injections are not too bad and neither are the side effects. Wish me luck!

I was seeing a regular neuro, now I am switching to another general neuro, because he knows about the LDN. I basically decided in advance that I wanted to be on it, and found my new doctor based on that decision, as I don't want to be fighting with a dr. who does not support my treatment of choice.

I hope the Rebif works well with no side effects...

[Mom2M]

Hi again,

Kiara, how did it go with rebif? Hope you are feeling ok.

Have you actually had your Vitamin D levels checked? 2,000 IU wasn't anywhere near enough for me. My levels were still only 19 after supplementing a while! I've took 4,000 IU a day and my level only raised to about 40 after eight months. Your levels should be at least 50 and probably more like 70-80.

I haven't ever had them checked! I do take 2000 mg of Ca+ chews too with each having Vit D added for a total of 800 extra iu's. Still not 4000 though. I am going to ask at my next appt with a dr, I think it's my OB on the 15th, for a level.
Thanks for the suggestion!

I didn't start copaxone until 4 years after my big exacerbation...I kind of wish I had started earlier because I definitely didn't have a benign course as far as disability except when in remission at the end of my last pg and during that year of breastfeeding...

Who knows, though, maybe it wouldn't have changed anything.

Serenitti, I totally agree with you on the diet. I also followed Swank, then changed it a bit so that it wasn't quite as restrictive but I still eat extremely healthy food and exercise a lot!
The times I have eaten any kind of junk food, I notice a difference immediately and I believe that is why I have been able to form new pathways for the nerves in spite of the fact that I have had some disabling relapses.

I don't believe my diet has caused the relapses because I've always been quite health conscious, but I believe my diet is a big factor in recovery from them.

serenitii, if you do end up having an increase in disability, I definitely can recommend Copaxone because of the lack of side effects. It never makes me feel like crap like the interferons do.


So, with your MS, have any of you had specific issues as far as taking care of your babies?
My one biggest fear is cognitive problems...Last year, for about 4 months I had some major difficulties and it caused a lot of problems just with carrying out daily activities. I went to OT and got a good system for dealing with them and finally it did go away and I could drop the strict routines.

I can deal with the loss of mobility for the most part if it should happen to get bad again, but cognitive stuff is scary. I'm hoping that now that things are stable, I'll have a long time before I have to worry about that!

Maybe if my D level is low, just increasing that will give even more protection.

Good night for now,

Deb

[luminesce]

Originally Posted by poetesss

Hi serenitii!
Thanks for chiming in! I am so grateful that you linked to that Mayo Clinic research...I was with a horrible neurologist who wanted me on the DMDs within a week of diagnosis and did not acknowledge my concern that I could possibly have a benign disease course. The reality is that, if I start on DMDs, no one will know whether it is helping me because my individual disease course is as of yet unknown.

The neurologist I saw for my Dx was great; he was a 4th year resident and talked to me on an even-level, respected the research I had done and my decision to not immediately start treatment. He also talked to me on the phone and gave me test results as they came in, instead of waiting all at once to help ease my anxiety while waiting for results (the first MRI mentioned a possible 'metastatic lesion' which created a lot of anxiety!) This was a bit before all the Vitamin D research became so prolific so, while he did test my level upon request (1 year after diagnosis and I started supplementing), he didn't say much about it or encourage me to raise it. Overall, I liked him. But then, he left. I went to see another neurologist right before I got pregnant who was simply awful. With pregnancy, baby, toddler... life went nuts and I haven't gone on the hunt for a new neurologist yet. It is definitely important to find one that you feel comfortable with; I know I should try again before I need to see one. I probably will when DS is a little older and life isn't so crazy. Good luck with your visit!

Originally Posted by poetesss

You mentioned that with 4,000 IUs it took a while for your levels to go up. Dr's routinely prescribe the 50,000 IU pills to get levels up quickly. I haven't done that, but I am currently taking 6,000-8,000 IUs a day. I will consider taking higher levels if my recent blood test is not showing a good increase. Here's an interesting MS and vit. D study, which showed a reduction in relapse rate. However, participants were taking very high D doses:

High Doses of Vitamin D Cut MS Relapses

I wish I had paid more attention to my levels before. I think they have been up and down since I was diagnosed but I also think that even when low, they were probably better off than before diagnosis. Given that I was still deficient after supplementing for a year, I suspect I was one of those people with an atrocious beginning level. Given the terrible muscular pain I was in the winter before my diagnosis, I've wondered if I was completely devoid of Vitamin D.

[luminesce]

Originally Posted by Mom2M

Hi again,
I haven't ever had them checked! I do take 2000 mg of Ca+ chews too with each having Vit D added for a total of 800 extra iu's. Still not 4000 though. I am going to ask at my next appt with a dr, I think it's my OB on the 15th, for a level.
Thanks for the suggestion!

No problem. Let us know what your levels are! I'm ever-curious about MS and vitamin D levels! I do all my well-woman care at the birth center I gave birth at; the midwives there have started screening everyone routinely for Vitamin D and are beginning to educate everyone about it. I think it is great more people are becoming aware of this.

Originally Posted by Mom2M

I didn't start copaxone until 4 years after my big exacerbation...I kind of wish I had started earlier because I definitely didn't have a benign course as far as disability except when in remission at the end of my last pg and during that year of breastfeeding...

I've thought about this; one day I may wish I had taken medication earlier. I was diagnosed, got pregnant a year later and have since been breastfeeding so all those things may be protecting me from a big relapse. I do get intermittent flare-ups of my original symptoms but they are fleeting.

Originally Posted by Mom2M

Who knows, though, maybe it wouldn't have changed anything.

That is the thing with these drugs... they are recognized as only being moderately effective and at a big cost/inconvenience. You could be on them and think they are helping but just naturally be one of the luckier ones who has a more mild disease course. It really is hard to tell. Plus, the earlier on you take some of them, the more likely you develop neutralizing antibodies, which may mean they won't work later when you DO need them. With what we know of the disease and the way the medications work right now, it is largely a guessing game. That is why the Mayo clinic study really resonated with me. I figured a wait-and-see approach was as good as any but one day I may have a different perspective.

Originally Posted by Mom2M

Serenitti, I totally agree with you on the diet. I also followed Swank, then changed it a bit so that it wasn't quite as restrictive but I still eat extremely healthy food and exercise a lot!
The times I have eaten any kind of junk food, I notice a difference immediately and I believe that is why I have been able to form new pathways for the nerves in spite of the fact that I have had some disabling relapses.

My diet is SO much better now. I consumed a lot of convenience foods containing MSG prior to MS; I think it really affected me. It has been really hard to cut MSG out of my diet though. Have you ever noticed how many foods contain some form of it? It is crazy. We make most of our food from scratch now, excluding some canned veggies and sauces.

Originally Posted by Mom2M

serenitii, if you do end up having an increase in disability, I definitely can recommend Copaxone because of the lack of side effects. It never makes me feel like crap like the interferons do.

I've read that... it would probably be my second choice. (LDN first)

Originally Posted by Mom2M

So, with your MS, have any of you had specific issues as far as taking care of your babies?
My one biggest fear is cognitive problems...Last year, for about 4 months I had some major difficulties and it caused a lot of problems just with carrying out daily activities. I went to OT and got a good system for dealing with them and finally it did go away and I could drop the strict routines.

I haven't really had any issues so far. I've been tired at times but a lot of that is probably normal. DS didn't sleep through the night until he was well, well over a year old so I was in a polyphasic sleep pattern that was awful to get out of. My sleep cycles are still messed up.

I haven't noticed any cognitive stuff so far. I did notice a little OCD after DS was born; everything had to be just-so with cleanliness, food prep, etc. I think that was just normal motherly instincts gone a little overboard though and the inclinations have pretty much subsided.

I do like to play piano a little and wow, does that ever tire me! It feels like exercise for my head.

[luminesce]

Originally Posted by CarrieMF

Dh has a definite dx, a week after the ON started he had a MRI which showed the lesions.

If drugs are something he wants to start, he is definitely a candidate. Some neurologists recommend starting disease modifying drugs after a clinically isolated syndrome and most recommend them after definite diagnosis. So, I'd switch doctors if he wants to go that route. That said, I've chosen to wait. If I were a male thought, I might make different choices given that MS is often more disabling in men. How are his Vit D levels? Has he had luck with any other lifestyle changes and/or supplements?