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MS or Not that is the BIG question.....

PostPosted: Thu Mar 27, 2014 8:09 pm
by tinkhammer
Hello everyone, I'm completely new to this site as well as the MS community. I've decided to do my intro here because I've yet to be diagnosed with MS. So here is my story. I'm 33 year old female, mother of 3 wonderful kids, engaged to a wonderful man, who has been my rock through all of this. I have recently experienced my very first MS symptom, which happened back in Feb. of this year. It all started when I went for a routine visit to the eye doctor which saw that my nerves in my eyes looked a little large and told me that I needed to check my family history for glaucoma. So I do, and I do have a family history of it. Well anyway the following week I started having severe eye pain when I moved my left eye up, down, left, or right. So not thinking that it was a bad thing, I put up with it for about a week. When I started losing vision in my left eye I decided maybe I should get it checked out. I go to my eye doctor who tells me that it looks like MS and that I needed to see the eye MD of that practice; so I go see him on a Friday. He tells me that its optic neuritis and that I need an MRI. So the very next Tuesday I'm having my MRI w/wo contrast. On the following Thursday I received a call from my Family doctor telling me that I need to come in ASAP to get the results of my MRI so I make an appointment for the next day, which is Friday 3/7/14. So I go in for my results and he tells me that he is admitting me into the hospital for IV steroids and more testing (lumbar puncture,another MRI,plus bloodwork) and that it is very possible that I have MS because the MRI showed that I have 3 lesions, two on the brain and one on the brain stem. I then go to the hospital and start the IV and other tests. Lumbar puncture comes back good but they are sending it out for further testing (still no results from that test). Before I could leave the hospital I had to meet with the neurologist and have an MRI of my spinal cord. When the neurologist came to see me she told me that she couldn't confirm or deny that I have MS or if the lesions were from something else, but wanted me to make an appointment with the local MS clinic and start treatment right away, which would probably be a steroid injection once a week. I had my MRI of my spinal cord and it came back good. Which leads us all to the present day, when I get a phone call from the MS clinic that tells me that the doctor reviewed my file and wants to see me ASAP. So I have an appointment with her on this coming up Tuesday. I'm scared to death, honestly I have been doing so much research because this is the first time I've ever had to deal with having MS, that I'm not sure what or who to believe. While researching I found this forum! (So glad I did) I don't have any family history of MS. Just not sure what to do next. Any advice or words of encouragement would be greatly appreciated! Thanks in advance! :smile:

Re: MS or Not that is the BIG question.....

PostPosted: Thu Mar 27, 2014 9:35 pm
by THX1138
Welcome tinkhammer :)
I'm glad you found this forum, too.

Conventional doctors consider MS to be mysterious and are at a loss to do a whole lot about it. So, one needs to look beyond their paradigm which is largely limited to prescribing drugs in an attempt to deal with sickness.
Conventional doctors, as wrong as it may seem, know very little of the crucial role of nutrition in health. Please see: Status of nutrition education in medical schools.
If I was in your situation now, right away I would pick up the book Could It Be B12?: An Epidemic of Misdiagnoses . Your doctor will most likely give you a serum B12 test, but that test is, all too often, misleading as to how a person's health is concerned.

Our health is in our hands. We cannot afford to leave it to others. This is even more significant considering the poor track record of the medical community in dealing with MS.

I wish you the best

Re: MS or Not that is the BIG question.....

PostPosted: Fri Mar 28, 2014 8:46 am
by CaliReader

I'm wondering why weekly steroids and not one of the 'disease modifying drugs? Steroids can help, but they have side effects including loss of bone density. I would want to know for how long the doctor was proposing to treat you with steroids.

Best of luck.

Re: MS or Not that is the BIG question.....

PostPosted: Fri Mar 28, 2014 4:35 pm
by bartman
For some reason, optic neuritis is only associated with MS, when it can be caused by an infection. If I were you I would avoid the steroids. Has your doctor tested you for Lyme? Bartonella? Mycoplasma Pn? Do you know that Lyme disease is the most controversial disease in the history of medicine? Due to the controversy in just about all facets of the disease from testing to treatment it has become very political. Currently, there are 7 states that have passed laws protecting Lyme doctors that treat longer than the recommended guidelines suggest. There are two groups IDSA (bad) vs ILADS (good) who disagree on how to treat and how to diagnose. The laws are to protect doctors who treat with longterm antibiotics and who treat based on clinical diagnoses because the testing is not accurate. Doctors who treat differently then the IDSA suggests are harassed by the medical boards and have been forced out of medicine....This scares doctors from treating these infections, in fact they don't even consider them. If you do have an infection steroids will destroy you as they suppress your immune system and allow the infection to spread all over. You need to learn about Lyme and coinfections very quick. Start by reading this article published 2 days ago. You should get on minocycline immediately as that covers infections and is used to treat MS. I hope this email helps you find the answer. Remember Do No Harm, now that they have labeled you with MS it will be very hard for them to consider anything else, you need a LLMD. ... e-disease/

Re: MS or Not that is the BIG question.....

PostPosted: Thu Apr 10, 2014 6:57 am
by tinkhammer
Update!!! I recently went to the neurologist. She said that my story sounds like MS; however, other than my eye issue and one spot on my MRI there's no other proof. So she said that I do have CIS and she does feel that I will have another symptom. But as of right now she isn't going to start me on any meds. She did run a few tests like B12 (which came back a little low but still in normal range) so I have to start taking that. She also tested me for Lupus and it came back positive but she said that she feels its a false positive. HIV test came back negative. Lyme came back negative. She also ran another test but it also came back negative. If I don't have another symptom in the next 6 months I have to go back for another MRI for her to monitor the spot on my brain. This is where we are now! Thanks everyone who posted on this topic it has helped me get the tests I need to make sure they are doing the right thing with my diagnose! It is greatly appreciated!! :smile:

Re: MS or Not that is the BIG question.....

PostPosted: Thu Apr 10, 2014 8:33 am
by THX1138
She did run a few tests like B12 (which came back a little low but still in normal range) so I have to start taking that.
If I may ask, what was the number :?:

Excellent video on the seriousness and misdiagnosis of B12 issues: