Nonspecific white matter and other issues - any advice <3

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

Nonspecific white matter and other issues - any advice <3

Postby shenanniganz » Fri Oct 25, 2013 5:31 pm

Do these symptoms sound familiar to you?

I have had issues for about 2 years:
1. Brief and long term (2 minutes to 3 days) moments of extreme vertigo
2. brief lapses of confusion to the point i don't know where i am or what I am doing (really fun when driving)
3. Can't remember dates, what year it is
4. Constant pins/needles in shifting parts of the body
5. Limbs going numb easily
6. Intermittent *Extreme* levels of lower back pain, and all over pain in joints, flaring down my legs at random times
7. Periods of exhaustion so extreme its like being anesthetized. There is nothing to do but fall over and sleep.
8. Difficulty moving legs at points, sometimes this is due to extreme pain, sometimes its just cause the leg(s) don't work
9. Massive brief cluster head aches (lasts 1-3 seconds, feels like someone is drilling into your head)
10. Blood tests now show elevated HGB, AST and ALS (i think thats what they are). Elevated Sed Rate. Extremely low Vit D (9.2) and everything else is great. No Lymes Disease. No Lupus.

Have discussed symptoms with doctors for years and was at PT, holistic accupuncture people, etc. They threw muscle relaxers at me, pain pills ( I hate pills, I don't take them unless I am dying). Finally got an MRi, and it showed "Nonspecific white matter" regions present. I don't know what that means, the dr says it doesn't rule it out nor does it definitively mean I have MS. I am going to a neurologist in two weeks.

Additionally, I'm a 41 year old female. i have gained almost 50 pounds in this past 2.5 years. I have one absolutely amazing 15 year old daughter. There is no history of MS in my family. My blood pressure is great, my vitamin levels are all perfect, except vitamin D is super low, and am taking supplements for. I have PCOS, had cervical cancer in my early 30s and had a vag hysterectomy. Other than those things I've been perfectly healthy all my life.

Any advice is greatly appreciated, I am flying alone and blind.
shenanniganz
Newbie
 
Posts: 1
Joined: Fri Oct 25, 2013 5:21 pm

Advertisement

Re: Nonspecific white matter and other issues - any advice <

Postby jimmylegs » Sat Oct 26, 2013 10:19 am

hey sorry to hear. any chance you can private message or share the various vit levels? did they test any mineral levels?
jimmylegs
Volunteer Moderator
 
Posts: 9109
Joined: Sat Mar 11, 2006 3:00 pm

Re: Nonspecific white matter and other issues - any advice <

Postby lyndacarol » Sat Oct 26, 2013 1:08 pm

shenanniganz wrote:Do these symptoms sound familiar to you?

I have had issues for about 2 years:
1. Brief and long term (2 minutes to 3 days) moments of extreme vertigo
2. brief lapses of confusion to the point i don't know where i am or what I am doing (really fun when driving)
3. Can't remember dates, what year it is
4. Constant pins/needles in shifting parts of the body
5. Limbs going numb easily
6. Intermittent *Extreme* levels of lower back pain, and all over pain in joints, flaring down my legs at random times
7. Periods of exhaustion so extreme its like being anesthetized. There is nothing to do but fall over and sleep.
8. Difficulty moving legs at points, sometimes this is due to extreme pain, sometimes its just cause the leg(s) don't work
9. Massive brief cluster head aches (lasts 1-3 seconds, feels like someone is drilling into your head)
10. Blood tests now show elevated HGB, AST and ALS (i think thats what they are). Elevated Sed Rate. Extremely low Vit D (9.2) and everything else is great. No Lymes Disease. No Lupus.

Have discussed symptoms with doctors for years and was at PT, holistic accupuncture people, etc. They threw muscle relaxers at me, pain pills ( I hate pills, I don't take them unless I am dying). Finally got an MRi, and it showed "Nonspecific white matter" regions present. I don't know what that means, the dr says it doesn't rule it out nor does it definitively mean I have MS. I am going to a neurologist in two weeks.

Additionally, I'm a 41 year old female. i have gained almost 50 pounds in this past 2.5 years. I have one absolutely amazing 15 year old daughter. There is no history of MS in my family. My blood pressure is great, my vitamin levels are all perfect, except vitamin D is super low, and am taking supplements for. I have PCOS, had cervical cancer in my early 30s and had a vag hysterectomy. Other than those things I've been perfectly healthy all my life.

Any advice is greatly appreciated, I am flying alone and blind.

Welcome to ThisIsMS, shenanniganz.

We are a group of many experiences and opinions with MS. Although you are undiagnosed with MS, we are happy to share with you. Since you have said that "Any advice is greatly appreciated," I feel free to offer mine.

It is a good habit to keep a list of symptoms, as you have done. Your symptoms are familiar to one or more of us with MS; the problem is the symptoms of MS are common to MANY conditions. You are wise to keep your own file of test results, especially for blood tests. You and your doctor seem to have a good plan of action going. Before you see the neurologist in two weeks, it might be helpful to see what the University of Chicago describes as an initial neuro exam (You have started on much of it.): http://peripheralneuropathycenter.uchic ... #bloodtest

In my opinion, this section on blood tests is especially important:

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 this is VERY important, as well as a mannitol-lactulose test for Intestinal Permeability.)
Lyme disease (You say this has been checked.)
HIV/AIDS
Hepatitis C and B

I have no medical background, but these are my thoughts based on my situation: I suspect that you may have Intestinal Permeability (IP), that too much insulin is leaking from small intestine into the bloodstream (Insulin is necessary for weight gain… Your recent 50-pound gain. Excess insulin is also part of PCOS.) I suggest that you ask your GP to test for Insulin Permeability; I suggest that you also ask him to order a "fasting blood insulin test" – this is NOT the same as the glucose test done to diagnose diabetes. (The ideal insulin test result is 3 UU/ML or lower; mine has never been below 9.)

By the way, I had a hysterectomy at age 32, due to endometriosis.

We are glad that you have found us. We welcome your questions.
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?"
User avatar
lyndacarol
Family Elder
 
Posts: 2351
Joined: Thu Dec 22, 2005 3:00 pm

Re: Nonspecific white matter and other issues - any advice <

Postby jimmylegs » Sat Oct 26, 2013 5:00 pm

(Jimmylegs, here at TIMS, recommends magnesium, zinc, and copper also.)


tip of the iceberg
jimmylegs
Volunteer Moderator
 
Posts: 9109
Joined: Sat Mar 11, 2006 3:00 pm


Return to Undiagnosed

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service