New. MRI coming up. Am I on the right path?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

New. MRI coming up. Am I on the right path?

Postby heatherlisa » Sat Apr 05, 2014 4:11 pm

Hi all, I'm a 31 year old mom and one of my boys has Autism. I mention this because there seems to be a link between moms with autoimmune issues and having children on the spectrum. I treat my son with diet and alternative treatments and he has reacted well to that.

I've been falling apart for years now. I admit that I am the worst at taking care of myself. Before going to my doctor last summer with extreme leg pains and numbness/tingling/weakness in my arms, I hadn't gone in a few years. That was a bad "flare-up"...it lasted two weeks. And then it went back to just being sporadic (which it had been for years before that appt). Until I just had another "flare-up" again. In addition to the pain/tingly/weakness/stiffness/numbness in my limbs I also have had increased urination, issues with feeling dizzy and seeing stars, floaties/a film in my eyes that hasn't gone away in years, numbness around my nose and mouth, blurriness in my peripheral vision, chronic fatigue (but I'm a working mom with two boys with varying special needs, i volunteer and am an advocate for other families in the area, I've always just wondered if I put too much on my plate). I always feel like I keep getting "dumber" for lack of better words lol. I have issues with word retrieval and memory. Just this week while working with a client I totally blanked on the words of the Itsy Bitsy Spider. Numerous times a day I forget what I'm doing. I just can't word it any other differently than I feel like I have contracted ADD in my adult life and have lost some points in my IQ. Just four weeks ago have realized I can no longer hang prone on a yoga ball because when I come back up I get an instant migraine-like headache as well as see stars and feel sick (I'm a pediatric occupational therapy assistant and I do this often in my line of work :) ). Family history of diabetes, celiacs, brain tumor, fatal stroke before 50, and perhaps an aunt with MS or lupus or something of the sort but she hasn't been diagnosed.

I think I got it all in there. Went to the doctor to finally ask about these symptoms four weeks ago (ironically right before my latest "flare-up") because I'm newly married and my husband and I have been trying to get pregnant for nine months (my boys are not his biologically) and I realized I should probably really check into my health for once. She ordered a urine test for diabetes, a CBC, CMP, ESR, lyme, and a thyroid test (she was leaning towards RA). Everything come back just fine. She then ordered me an MRI. That is scheduled for this upcoming Tuesday.

I'm a little scared. And a little baffled on whether I want there to be something so I'm not imagining all of this or for there to be nothing because of course I want my life to be as simple and healthy as possible.

I really wanted to just talk to someone who maybe has gone through this before. And also wanted your opinion on whether I should try to get my name on a neurologist's wait list? I don't really know if I'm doing what I should be doing right now. The MRI seems to be a good point? My regular doc says if this comes back with no signs of MS she will refer me to a rheumatologist- is that the right route? I know this could be lupus or a gazillion other things so I understand why she would do that. But also knowing what I know about treating my son's autism compared to what his regular pediatrician has suggested in the past....well I have become leery of traditional medicine.
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Re: New. MRI coming up. Am I on the right path?

Postby jimmylegs » Sun Apr 06, 2014 6:23 am

hi and welcome to the forum :) i have been through a lot of the issues you describe. not fun!
given what you've said about lifestyle, family background, and personal experience with your boys, you might find this useful reading:
regimens-f22/topic2489.html
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Re: New. MRI coming up. Am I on the right path?

Postby heatherlisa » Sun Apr 06, 2014 6:42 pm

Thank you! That's exactly what I need to hear. I need to get my brain to jump from hyperfocusing on autism and biomedical treatments to my health...thank you for the link, I have a feeling I'll be visiting that thread often.
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Re: New. MRI coming up. Am I on the right path?

Postby heatherlisa » Thu Apr 10, 2014 4:28 pm

Got my MRI results today and everything looked "normal". Good news, right! Still frustrating not knowing for sure why I have all these symptoms :/ Originally my doctor was going to refer me to a rheumatologist but now she is referring me to a neurologist. I'm not sure which path is really the best for me and I hate the idea of shuffling around between specialists- I just wanna get to the bottom of it.
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Re: New. MRI coming up. Am I on the right path?

Postby lyndacarol » Thu Apr 10, 2014 6:57 pm

heatherlisa wrote:Hi all, I'm a 31 year old mom and one of my boys has Autism. I mention this because there seems to be a link between moms with autoimmune issues and having children on the spectrum. I treat my son with diet and alternative treatments and he has reacted well to that.

I've been falling apart for years now. I admit that I am the worst at taking care of myself. Before going to my doctor last summer with extreme leg pains and numbness/tingling/weakness in my arms, I hadn't gone in a few years. That was a bad "flare-up"...it lasted two weeks. And then it went back to just being sporadic (which it had been for years before that appt). Until I just had another "flare-up" again. In addition to the pain/tingly/weakness/stiffness/numbness in my limbs I also have had increased urination, issues with feeling dizzy and seeing stars, floaties/a film in my eyes that hasn't gone away in years, numbness around my nose and mouth, blurriness in my peripheral vision, chronic fatigue (but I'm a working mom with two boys with varying special needs, i volunteer and am an advocate for other families in the area, I've always just wondered if I put too much on my plate). I always feel like I keep getting "dumber" for lack of better words lol. I have issues with word retrieval and memory. Just this week while working with a client I totally blanked on the words of the Itsy Bitsy Spider. Numerous times a day I forget what I'm doing (brain fog). I just can't word it any other differently than I feel like I have contracted ADD in my adult life and have lost some points in my IQ. Just four weeks ago have realized I can no longer hang prone on a yoga ball because when I come back up I get an instant migraine-like headache as well as see stars and feel sick (I'm a pediatric occupational therapy assistant and I do this often in my line of work :) ). Family history of diabetes, celiacs, brain tumor, fatal stroke before 50, and perhaps an aunt with MS or lupus or something of the sort but she hasn't been diagnosed.

I think I got it all in there. Went to the doctor to finally ask about these symptoms four weeks ago (ironically right before my latest "flare-up") because I'm newly married and my husband and I have been trying to get pregnant for nine months (my boys are not his biologically) and I realized I should probably really check into my health for once. She ordered a urine test for diabetes, a CBC, CMP, ESR, lyme, and a thyroid test (she was leaning towards RA). Everything come back just fine. She then ordered me an MRI. That is scheduled for this upcoming Tuesday.

I'm a little scared. And a little baffled on whether I want there to be something so I'm not imagining all of this or for there to be nothing because of course I want my life to be as simple and healthy as possible.

I really wanted to just talk to someone who maybe has gone through this before. And also wanted your opinion on whether I should try to get my name on a neurologist's wait list? I don't really know if I'm doing what I should be doing right now. The MRI seems to be a good point? My regular doc says if this comes back with no signs of MS she will refer me to a rheumatologist- is that the right route? I know this could be lupus or a gazillion other things so I understand why she would do that. But also knowing what I know about treating my son's autism compared to what his regular pediatrician has suggested in the past....well I have become leery of traditional medicine.

Welcome to ThisIsMS, heatherlisa.

First of all, you are not imagining all of this; as a pediatric occupational therapy assistant, you probably have a good grasp on health issues. I am not sure you need a specialist yet until you have a better idea of what you are dealing with. I am convinced that if you see a neuro, he will only see the problem/solution in neurology. I have read: "doctors are experts in, and only test for, those parts of the body in which they specialize."

There is no definitive test to diagnose MS; it is an exclusionary diagnosis, made by ruling out first other conditions that share the same symptoms. If you have a good working relationship your GP, start with her. She can order some of the following blood tests.

Numbness/tingling in the legs, arms, or hands is the textbook definition of "peripheral neuropathy." This is a common symptom in MANY conditions. In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... #bloodtest


Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B
Please note that the first blood test the U of Chicago suggests is for vitamin B12. I definitely think this is the place to start. There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.

You may find information in the following video useful: "Everything You Want Your Doctor to Know about Vitamin B12"

http://www.youtube.com/watch?v=BvEizypo ... e=youtu.be

I highly recommend this 50-minute documentary from the filmmaker Elissa Leonard, featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

@1:23 "The neurological manifestations well precede the hematological manifestations."

@1:46 "In 1948 scientists isolated a red crystalline pigment and named it vitamin B12. It is a primordial molecule responsible for the health of all the DNA in all our cells. The Framingham Offspring Study suggests 40% of Americans have suboptimal B12."

Many of your symptoms are found in vitamin B 12 deficiency – even your son's autism has a possible connection to B12. Has he ever been tested for a vitamin B 12 deficiency?
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