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almost medfree
Veteran Member


Date Joined Jan 2004
Total Posts : 2570
   Posted 12/30/2013 8:54 AM (GMT -6)   
Hi Everyone,

I'm new to the MS forum and I'm going to seeing my doctor on Thursday concerning some MS symptoms I've had for years.

Could you give me some advice on what I should ask him? I read through some of your posts and it sounds as if testing for MS isn't very accurate? Is there a way to get around that? A specific kind of test to take?

I'm very medication sensitive so I wouldn't be open to be put on steroids for MS. I do eat a very healthy diet and I take nutritional supplements.

Finally, what about lyme? Is there a test I should bring up to test me for lyme that would be accurate?

Thanks!
Fibromyalgia, CFS, MCS, scoleosis, herniated disks, spinal stenosis, osteoarthritis, sjorgens, sleep apnea, asthma, allergies, headaches. On a regiment of different supplements including sleep supplements. I eat nutritiously and do not eat foods I'm sensitive to and ever since a back injury triggered my fibromyalgia, I have been doing prescribed stretches twice daily.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 12/30/2013 1:09 PM (GMT -6)   
I am sorry you are not feeling well. You are correct. MS is difficult to diagnose. There is no one test. I see you have posted on the Lyme board as well. Learnlyme and others have given you some great info. Let me know if you still have questions.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Cat53
Veteran Member


Date Joined Jul 2012
Total Posts : 672
   Posted 1/4/2014 6:48 AM (GMT -6)   
Almost, My husband was diagnosed by one of the top neurologists in my state for ALS in 2011. If it were not for the Lyme board and other vital info, on the web, I would not have known about it possibly being Lyme. He had lost function in his hands and arms and it was starting to affect his legs when he spent 4 months using alternative therapy. His symptoms stopped progressing. If you know anything about ALS, you would know it is basically a death sentence. If it wasn't for all these wonderful people and doctors who believe chronic lyme exists, I believe my husband would either be in a wheelchair or dead now. I know another woman who has ALS symptoms and she is using the same protocol as my husband and slowly healing. At any rate,testing needs to be done by a lab that uses the best methods for Lyme and it's coinfections. Igenex Lab in Palo Alto, Ca. is the one recommended. My husband got his workplace doctor to send blood samples for him. Some get the testing done through a a lyme literate doctor. You can also go to the Lyme forum to ask questions. Many people on there are very knowledgeable about treatment so it's good your are keeping your mind open and checking out the Lyme forum.
"Facts do not cease to exist because they are ignored" Aldous Huxley

Husband, Toby, diagnosed with ALS summer of 2012. Tested positive for Lyme Spring 2013 - Igenex Lab. Treatments used: Rife, Erchonia Laser, Acupuncture, Antibiotic - Doxyclycline, Herbal Remedies - Japanese Knotweed (powder form), Cat's Claw, Detoxifying - Ionic Foot Baths.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 1/4/2014 10:12 AM (GMT -6)   
Cat53

This member has already posted to the Lyme board. It is not necessary for you to post on the MS board.

I am glad your husband is doing so well with his Lyme protocol. Best of luck to both of you for continued healing.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Cat53
Veteran Member


Date Joined Jul 2012
Total Posts : 672
   Posted 1/4/2014 5:05 PM (GMT -6)   
Gretchen, You never know if another person reading this post can be helped by the experiences of others. It happened with a member of Healing Well who has ALS symptoms like my husband and discovered Lyme was the root cause of her illness. She didn't start out at the Lyme site because she didn't know anything about it. If I didn't post, she would have never know and would have continued with her progression. You certainly can come on the Lyme site and post. Telling me "It is not necessary for you to post on the MS board" is not what the Healing Well forum is about. It's about sharing ideas and experiences and if someone with similar physical issues feels their experiences and knowledge can help someone on a different forum then I think that's a good thing. The members can then weigh this as an option to look into.
Now Almost brought up this question about testing for Lyme on the MS forum. According to your logic, this member should only be asking this question on the Lyme site right?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 1/4/2014 5:39 PM (GMT -6)   
Yes. Lyme questions need to be asked on the Lyme board. MS quesitons are to be asked on the MS board. I have asked you not to post here. The purpose of HW is to be supportive to those with chronic illness. Your post is not supportive.

I am now locking this thread. If your persist in posting off-topic messages then you may be banned by the administrator.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.
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