Help Please... New and Seeking information ..

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

Help Please... New and Seeking information ..

Postby kmeredith78 » Mon Jun 10, 2013 5:02 pm

Hi Gang .....

I have been on a scavenger hunt online for as much information as I can find since my doctor's appointment this morning..... I've been having some lil issues over the past 2 years {just so y'all know, I do NOT go to the doctor... Yea, I'm one of THOSE} .... but I finally went today and after a pretty lengthy conversation my doc dropped those two lil letters.... MS .. Ugh!?

I am a very healthy, active 35 year old female... but I've been noticing my fingers going numb, cold, white periodically...Well after about a year I went to my doctor, purely convinced he was gonna give me the same diagnosis as my brother... diabetes. But to my surprise.. NOPE! So he just sent me on my way thinking maybe just a circulatory issue, plus it was winter and I kept putting it off to extreme coldness..?.. Anyways... So that came and went but for the past 6 months I have a few more issues to add to the mix... My stinkin' feet are now going numb.... completely going to sleep feeling! And now, it's both of my legs! I told him that it's an everyday occurrance now... Along with blurred vision, foggy thinking, headaches..... I have not had ANY testing done yet... I don't have health insurance at the moment so we agreed I'd wait until I get insurance and then he wants to refer me to a Neurologist for further testing ....

Do these symptoms sound familiar to y'all?

Also... I have been reading and would LOVE to hear more from others... Some say your life isn't really changed all that much, while I've read some say it's turned their lives upside down..??.. I am a single mother of 4 kids, going through college... Keep thinking "I dont have time for this?!?!?!"

Thanks everyone for sharing your experiences....
Kelly
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Re: Help Please... New and Seeking information ..

Postby NHE » Mon Jun 10, 2013 5:11 pm

Welcome to ThisIsMS.

kmeredith78 wrote:I've been noticing my fingers going numb, cold, white periodically...Well after about a year I went to my doctor, purely convinced he was gonna give me the same diagnosis as my brother... diabetes. But to my surprise.. NOPE! So he just sent me on my way thinking maybe just a circulatory issue, plus it was winter and I kept putting it off to extreme coldness..?


That sounds like Raynaud's syndrome. I've had it myself.

Here's some more info...

http://www.mayoclinic.com/health/raynau ... se/DS00433

http://www.nhlbi.nih.gov/health/health- ... s/raynaud/

Some folks have found magnesium and zinc supplements to be helpful.


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Re: Help Please... New and Seeking information ..

Postby lyndacarol » Mon Jun 10, 2013 7:26 pm

Welcome to ThisIsMS, Kelly.

Your brother has type II diabetes? If so, his insulin level (NOT to be confused with the glucose level) is elevated. I suspect that your pancreas is also producing excess insulin. Excess insulin can damage the interior of your blood vessels (perhaps causing the sensations in your fingers, feet, and legs) – I suggest that you ask your GP for a "fasting blood insulin test." The optimal test result that you want will be 3 UU/ML or lower. I have the same cold extremities and my insulin test result has never been below 9 UU/ML.

There is no medication to lower elevated insulin levels; at this time, diet is the only way to accomplish this. There are many suggestions in the Diet forum on this site. I am currently reading a book that recommends all forms of wheat – even whole wheat as well as refined – should be eliminated from the diet. The author's arguments make sense to me. In addition, any food that raises the blood sugar (glucose) level should be avoided as much as possible. (When the blood sugar goes up, the insulin level goes up, too.)
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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Re: Help Please... New and Seeking information ..

Postby kmeredith78 » Mon Jun 10, 2013 7:39 pm

Thanks for the additional info!!

I've heard of Raynauds {a good friend of mine has this} and actually pushed this off as this, until my feet and legs started tingling and going numb... I brought this up with my Dr today and he doesn't THINK this is it....
Yes, my brother was recently diagnosed with type II..... I went in for testing last winter and he said all my levels was good ...?... He just left it as "Call me back if this persists" type of stance... And after about 6 months I was calling back.
My main concerns/complaints would be feet/legs tingling, fuzzy thinking.... Feeling slow, confused? If that makes sense..??..
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Re: Help Please... New and Seeking information ..

Postby lyndacarol » Tue Jun 11, 2013 7:50 am

kmeredith78 wrote:Yes, my brother was recently diagnosed with type II..... I went in for testing last winter and he said all my levels was good ...?... He just left it as "Call me back if this persists" type of stance... And after about 6 months I was calling back.
My main concerns/complaints would be feet/legs tingling, fuzzy thinking.... Feeling slow, confused? If that makes sense..??..

Since the "fasting blood insulin test" is not routinely done and is generally only done on a specific request, I doubt that your testing last winter included this insulin test.

Insulin can cross the blood-brain barrier. Therefore, I think excess insulin can be related to "fuzzy thinking…… Feeling slow, confused" – it does make sense.
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Re: Help Please... New and Seeking information ..

Postby Ladymac » Tue Jun 11, 2013 11:08 am

kmeredith78 wrote:Hi Gang .....

I have been on a scavenger hunt online for as much information as I can find since my doctor's appointment this morning..... I've been having some lil issues over the past 2 years {just so y'all know, do NOT go to the doctor... Yea, I'm one of THOSE} .... but I finally went today and after a pretty lengthy conversation my doc dropped those two lil letters.... MS .. Ugh!?


Sorry to hear what you are going through. There is so much that needs to be done (testing) before you can have it confirmed if it is MS. I know for me, it makes you think back in time wondering if something else wasn't what you thought it was and on and on. Please find an MS Center in your area and make an appointment (usually need a referral from your doctor).

I am a very healthy, active 35 year old female... but I've been noticing my fingers going numb, cold, white periodically...Well after about a year I went to my doctor, purely convinced he was gonna give me the same diagnosis as my brother... diabetes. But to my surprise.. NOPE! So he just sent me on my way thinking maybe just a circulatory issue, plus it was winter and I kept putting it off to extreme coldness..?.. Anyways... So that came and went but for the past 6 months I have a few more issues to add to the mix... My stinkin' feet are now going numb.... completely going to sleep feeling! And now, it's both of my legs! I told him that it's an everyday occurrance now... Along with blurred vision, foggy thinking, headaches..... I have not had ANY testing done yet... I don't have health insurance at the moment so we agreed I'd wait until I get insurance and then he wants to refer me to a Neurologist for further testing ....

Do these symptoms sound familiar to y'all?

Please know we all feel and emphasize with you. I wrote a piece on this website titled: Not Everything Is.... It was a humorous (or I will say my attempt of humor) look into parsing things out because by the time any of us got to the specialist (MS) our laundry list was so long of things that have been happening we felt like trying to connect all the dots on our own, some things may be and a lot of things weren't MS.

Also... I have been reading and would LOVE to hear more from others... Some say your life isn't really changed all that much, while I've read some say it's turned their lives upside down..??.. I am a single mother of 4 kids, going through college... Keep thinking "I dont have time for this?!?!?!"

Thanks everyone for sharing your experiences....
Kelly


Gosh Kelly, I was in my late 40's which is often considered "late" for diagnosis; my kids were at the same stage as yours are now, and I had the same feelings. Any challenge in our lives with the kids, job, illnesses, we can make things more manageable with taking things one step at a time and to not allow any diagnosis to crush our good times with our families, jobs, etc., and ask for their support as you start your journey to find out what can be managed and make the changes you need to do in order to continue moving ahead with your life. Please call the National MS Society and ask for help in finding resources and what can be done since you do not have insurance. The insurance issue is honestly a very important one right now, before you get a diagnosis of MS which since there is no single test for MS, you don't want that diagnosis on your paperwork (and now computer system with all the new health care laws) because it could make you not able to get affordable healthcare. You by law can get health care, but you know what I mean, it could cost more with a pre-existing condition. That would be the research I would do first (insurance), 2nd would be the evaluation at an MS Center with the MS Specialist Neurologist. They typically have their own MRI equipment in the office, or on site and they will make an appointment where you can ask for the MRI to be done with seeing the MS Specialist Neurologist to follow where he will read it with you and explain what he/she sees or doesn't see. But first you will need to have an appointment with them before they will order that, but between the MRI and the Neurologists who specialize in MS will do a spinal tap where they are looking for the presence of certain "bands" as one of the markers as well.

Hug your family, and Blessings to you,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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