Telling my story... advice please!!

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

Telling my story... advice please!!

Postby tutt » Wed Oct 02, 2013 3:37 pm

My name is Charity and I am 38 years old. I have recently been told that my MRI results are pointing in the direction of MS. I am scheduled for a 2nd MRI in 6 months from now and am also going in for some sort of nerve test... as you can see, I am very new to all of this and don't even know what this nerve test is all about.
I have been experiencing symptoms for a very long time, but until this MRI result I had no idea what I was dealing with. Researching for a week straight I have realized that I had symptoms as long as 6 years ago and didn't think anything of it. I just chalked it up to bizarre things my body was occassionaly doing. Following are some of my symptoms...
Intense dizziness to the point of grabbing hold of something to balance myself so I don't fall; horrible muscle cramping in both of my feet and glutes (I have always called them "Charlie Horse Cramps"); same cramping in my right hand; foggy/cloudy thinking; bladder problems (waking in middle of night, etc); sexual disfunction; and lastly a huge decrease in energy... I am so tired it's not even funny.

I finally got the ball rolling with doctors because of the dizziness problem. It has gotten much worse in the past year and it's been very difficult to get any doctors to really help me. I honestly started believing I would just live with this problem for the rest of my life. My biggest problem now is this... the neurologist I saw did not even want to discuss other symptoms other than the MRI findings and said if he sent me to an MS Clinic, they would turn me away and not help me because I'm not showing enough clear evidence. What exactly justifies "clear evidence"? What more do I need to live with and experience in order to get attention from an MS clinic? I am just frustrated and looking to hear advice from your experiences. Thank you so much for listening!!
tutt
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Re: Telling my story... advice please!!

Postby lyndacarol » Wed Oct 02, 2013 6:05 pm

tutt wrote:My name is Charity and I am 38 years old. I have recently been told that my MRI results are pointing in the direction of MS. I am scheduled for a 2nd MRI in 6 months from now and am also going in for some sort of nerve test... as you can see, I am very new to all of this and don't even know what this nerve test is all about.
I have been experiencing symptoms for a very long time, but until this MRI result I had no idea what I was dealing with. Researching for a week straight I have realized that I had symptoms as long as 6 years ago and didn't think anything of it. I just chalked it up to bizarre things my body was occassionaly doing. Following are some of my symptoms...
Intense dizziness to the point of grabbing hold of something to balance myself so I don't fall; horrible muscle cramping in both of my feet and glutes (I have always called them "Charlie Horse Cramps"); same cramping in my right hand; foggy/cloudy thinking; bladder problems (waking in middle of night, etc); sexual disfunction; and lastly a huge decrease in energy... I am so tired it's not even funny.

I finally got the ball rolling with doctors because of the dizziness problem. It has gotten much worse in the past year and it's been very difficult to get any doctors to really help me. I honestly started believing I would just live with this problem for the rest of my life. My biggest problem now is this... the neurologist I saw did not even want to discuss other symptoms other than the MRI findings and said if he sent me to an MS Clinic, they would turn me away and not help me because I'm not showing enough clear evidence. What exactly justifies "clear evidence"? What more do I need to live with and experience in order to get attention from an MS clinic? I am just frustrated and looking to hear advice from your experiences. Thank you so much for listening!!

Welcome to ThisIsMS, Charity.

This description of a neurological exam gives you an idea of what is done at one university:

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


Peripheral neuropathy (tingling/burning in the extremities – feet/legs and fingers/hands) is a common symptom of MS, but not necessarily experienced by everyone with MS. In the quiet of your home, make a list of all the symptoms you recall; start with your GP, discuss your symptoms, your GP can order the blood tests, ask for a referral to another neurologist (the one you have seen seems to be uncooperative). I think this section on blood tests makes good suggestions as a starting point (by the way, ask for copies of your test results and keep your own file at home). There is no one definitive test for MS; the diagnosis of MS is an exclusionary one – made by ruling out other possibilities.


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 (Jimmylegs here at TIMS recommends magnesium, zinc, and copper also.)
Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
Vasculitis evaluation
Oral glucose tolerance test (I suggest a "fasting blood insulin test" also.)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (I think testing for celiac/gluten intolerance is important.)
Lyme disease (Bartman, among other TIMS members, urges this testing.)
HIV/AIDS
Hepatitis C and B

MS is often difficult to diagnose. Initially, my test results came back "normal;" in fact, my first THREE MRIs were normal. Months after my first symptom appeared my fourth MRI showed lesions in the brain and I was finally diagnosed with MS. Take a deep breath, Charity. First of all, find doctors you feel comfortable working with. All the best to you
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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lyndacarol
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Re: Telling my story... advice please!!

Postby tutt » Thu Oct 03, 2013 9:39 am

Thank you so much, this information will be very helpful!
tutt
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Joined: Tue Oct 01, 2013 9:51 am


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