Questions from a newly diagnosed person....

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Questions from a newly diagnosed person....

Postby Kemond » Tue Jan 16, 2007 12:11 pm

At the beginning of Nov '06, I woke up one day with numbness in my legs, they worked fine, they were just numb. I thought I had possibly slept wrong etc.... But after a few days I mentioned it to my husband and he insisted I see my doctor. After meeting with my doctor, and having her consult a neurologist it was decided that blood work and an MRI would be done ASAP. When I was 5 years old I had a growth removed from my neck that went all the way down my back, but there are no medical records related to it (my folks didn't think to get a copy in 1977 - they thought the doctor or hospital would have them forever), so they wanted to rule out a connection hence the MRI. The inital thought was Transverse Myelitis. About 10 days after my first symptom I had an MRI and was diagnosed within 2 days of that. All told I was diagnosed within 13 says of the first symptom. I had many plaques on my brain an one on my spine. I chose Copaxone as a treatment and started about a week after diagnosis. I have read people's struggles with symptoms and years of not being diagnosed, so I am thankful for it being flushed out so quickly. Needless to say I was shocked, and now I have tons of questions. I am scheduled to meet with an MS Specialist at an MS Clinic in Boston in May, but I was hoping you all could clear up some things:

They said I have relapsing remitting, but what constitutes that? Do the symptoms come and stay for a while (any time frame), and then disappear - so that is why it is RR?

What is an attack? One symptom? A series of symptoms?
The numbness in my legs did go away, but now my left hand is numb, I have twitching in my face, and one specific area that itches (not related to my injections).

My last question for now is how do I know the meds are working? Do I really wait until I have another MRI in November?

I know I will have many more questions, and I appreciated your taking the time to read my post.

Kristen
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welcome!

Postby notasperfectasyou » Tue Jan 16, 2007 12:55 pm

Kemond,

Welcome to the boards. Congratulations on finding this treasure trove of info about MS. There are others here who will do a much better job at answering your questions. You are off on a good start because you're wanting to collect info and this illness is all about info. After you collect up your first set of answers, I'd recommend you read the 101 post that's linked below in my sig. You might even want to read the 102 post that follows it.

Thank you for becoming a member of the boards and we hope you'll become a regular here.

napay
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hi k

Postby jimmylegs » Tue Jan 16, 2007 4:12 pm

hey kristen, napay's advice about 101 and 102 is great. in the short term to help deal with your face etc while you wait to see more specialists, you can take some supplements if you care to try them. if you can find magnesium, at 250 or 300mg elemental, mixed with calcium and D3 and/or zinc, that would be a great place to start. also a strong B-complex, like a B-100 or a B-150. any nutrition questions, there's a whole forum and you can search on my posts but some are a little tangential based on what is going on in the thread at the time. yep, it's kind of a weird relief to get the diagnosis so quickly, isn't it? welcome to the board, from what i hear (i have no experience with others) this is the best one.
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Postby dignan » Tue Jan 16, 2007 6:57 pm

I'm glad you were diagnosed fast. I'm sorry it wasn't just that you slept wrong. I realize you can probably find these resources for yourself, but there are some good things out there for newly diagnosed individuals that should be helpful. Here is just a small sample.


Accelerated Cure Project publication for newly diagnosed:
http://www.bostoncure.org/downloads/bcp ... tsnext.pdf


U.S. National MS Society page on living with MS:
http://www.nationalmssociety.org/living%20with%20ms.asp


Canadian MS Society page for newly diagnosed:
http://www.mssociety.ca/en/information/newdiagnosed.htm


UK MS Society page for newly diagnosed:
http://www.mssociety.org.uk/just_diagnosed_pathway/
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Postby carolsue » Tue Jan 16, 2007 8:10 pm

I, too, was diagnosed relatively quickly (within a few months) and got on meds soon after diagnosis. Although I have had "relapses" since being on medication, each has been less severe than the previous and subsequent MRIs have not indicated change. Your numbness without paralysis and face twitching mirror my own set of symptoms---I hope that's a good sign and that you do as well as I have. Like you, I scheduled a visit with a MS specialist to get an "expert's" input. I found it helpful even if I didn't learn anything new.

You'll want to keep a log of all your symptoms and a list of all your questions for your MS specialist. And don't feel like you have to wait until May to ask a doctor about the efficacy of your meds. If you have new and different symptoms, it could be that Copaxone isn't working for you. The folks contributing to this site are very knowledgeable and it would be worth your while to search through the posts for info on supplements, diet and exercise.

best of luck to you.
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Re: Questions from a newly diagnosed person

Postby NHE » Wed Jan 17, 2007 4:54 am

Kemond wrote:They said I have relapsing remitting, but what constitutes that? Do the symptoms come and stay for a while (any time frame), and then disappear - so that is why it is RR?

Relapse remitting refers to the appearance of clinically relevant symptoms. By that I mean that MS attacks, or lesions in the central nervous system, come and go. Most of them do not produce noticeable symptoms. A clinical relapse occurs when an attack produces symptoms which "break through the ice" and poke their ugly head out where we notice them. The brain has some ability to compensate for the damage done by inflammatory attacks. It usually isn't until an attack occurs either in a sensitive area or the central nervous system can no longer compensate. You may want to refer to the graph on page 6 of this document from Opexa (a company developing a new experimental treatment for MS). Note that the time line for the progression of MS given in the graph is probably an average. Some may progress faster while others progress slower. Hopefully, with the information that we share on this forum we can all be in the latter group. Anyways, here's a definition of relapse remitting from the National MS Society.
    Relapsing-Remitting
    Characteristics: People with this type of MS experience clearly defined flare-ups (also called relapses, attacks, or exacerbations). These are episodes of acute worsening of neurologic function. They are followed by partial or complete recovery periods (remissions) free of disease progression.
    Frequency: Most common form of MS at time of initial diagnosis. Approximately 85%.
What is an attack? One symptom? A series of symptoms?

The NMSS also describes what they define as an exacerbation.
My last question for now is how do I know the meds are working?

Not to sound flippant or anything, but that's the million dollar question. The current medications are designed to slow the clinical progression of the disease and they're not very good at it, meaning that they're only about 30-35% effective. However, if you continue to progress then you should discuss this with your doctor and they may decide to alter your therapy. One of your best weapons against this disease is knowledge. Read all you can from trustworthy sources. When I was first diagnosed and choosing a medication, I picked up a medical dictionary and went through the doctor's prescribing information with a fine tooth comb for each of the ABC drugs. Since I was at a university at the time, I took about a month or so and read a bit of the published scientific literature on the ABCs. In the end, I feel that I made an informed decision. Even so, I continue to expand my knowledge base and this site is helpful opening up interesting avenues of investigation.
Do I really wait until I have another MRI in November?

No. I would follow Carolsue's advice and keep a log book of any new symptoms you have. I've found that it's really up to the patient to keep the doctor updated on what's going on. If a lot of new things are going on, then let them know. It's better for your doctor to evaluate you while all that stuff is current rather than after it's passed. It may be that there are treatments such as corticosteroids, e.g., prednisone, which can be given to help nip an attack in the bud and shorten its duration.
I know I will have many more questions, and I appreciated your taking the time to read my post.

As others have stated, welcome to the board. There are many folks here who are happy to be of help.

NHE
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Postby Kemond » Wed Jan 17, 2007 11:43 am

Thank you for your quick, insightful and encouraging responses. I appreciate the links to further information, I will admit that I looked at the sites, but at the time I didn't have the vocabulary to find what I was looking for so they are invaluable.

I have only been on the meds for about 2 months so I think I am going to stick with Copaxone for a bit longer and then talk to the specialist.

Thank you as well for the information on the supplements. The Neurologist said I should tke some but was less than specific.

Again, thanks and I'll be posting again - promise.
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Re: Questions from a newly diagnosed person

Postby NHE » Thu Jan 18, 2007 4:17 am

Kemond wrote:Thank you as well for the information on the supplements. The Neurologist said I should tke some but was less than specific.

I encourage you to have a look through the posts on the Natural Approach forum. Some supplements that may be of interest to you include omega-3 fatty acids from fish oil, vitamin D, curcumin which is an antioxidant found in turmeric, green tea, and lipoic acid all of which have been reported to have anti-inflammatory activity.

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suppies

Postby jimmylegs » Thu Jan 18, 2007 6:56 am

aye caramba kemond it gets WAY more specific i was trying not to hit you too hard on my first post lol!

NHE is right, and there is a bunch of supplement info in the general discussion also, i believe.

vitamin D supp. should be D3 (cholecalciferol, that is), as is explained in various posts. there's a 4,000 IU per day camp and some take down around 2000 or 1000. research supports the 4000. nick's latest posted abstract mentioned 10,000 i believe, and that number has lots of backup in the research too.

when you take D3 try to balance it with the magnesium and calcium and zinc because they all work together. the magnesium should directly address the facial twitching and i'd be interested to hear if it didn't.

in which case i'd suggest B1 (thiamin) but that would be in a b-complex anyway so you could hit the twitch from both ends.

yes the omega-3s are important too and you can also get those from flaxseed as well as fish.

i'm on a diff antioxidant tangent (uric acid) and don't take turmeric or green tea supplements although i'll surely enjoy a curry and a cuppa. i don't know much about lipoic acid (alpha-lipoic-acid, nhe? ALA?) but anti-inflammatory is good for sure.

have fun with the learning curve! it's the best part of a crappy deal, IMHO.
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Complementary Therapies

Postby Shayk » Thu Jan 18, 2007 6:09 pm

Kemond

Welcome. Legs advised (wisely I think) to have some fun with the learning curve.

With that in mind, here's a link to introductory information on complementary approaches (some already mentioned) you might end up exploring. It's a presentation by Lynn Shinto, N.D., of the Oregon Health Sciences University. Lots of great photos coupled with good information, although some of it is dated. I think the presentation was done in 2005.

Complementary Therapies In MS: Heart and Mind Medicine

I hope you enjoy it, even if it isn't a lot of fun. It's not totally boring IMO.

Sharon
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Re: suppies

Postby NHE » Thu Jan 18, 2007 7:20 pm

jimmylegs wrote:i'm on a diff antioxidant tangent (uric acid) and don't take turmeric or green tea supplements although i'll surely enjoy a curry and a cuppa. i don't know much about lipoic acid (alpha-lipoic-acid, nhe? ALA?) but anti-inflammatory is good for sure.

There are a couple of different forms of lipoic acid available. Please see my posts in this prior thread in the Natural Approach forum.

NHE
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presentation

Postby gwa » Thu Jan 18, 2007 8:00 pm

Good presentation shayk. It is very helpful. Thanks.

gwa
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