Hi from a "you might have MS" shell-shocked newbie

[Buela]

I just found out yesterday that my neurosurgeon (who I'm seeing for disks that are pressing into my spinal cord) thinks that I may have MS, and my primary doctor has been suspecting that but didn't say anything about it to me. I have been obsessively researching since then -- I am someone who copes best with a potentially difficult situation by learning absolutely everything I can about it.

I'm also someone who copes worst when I have something going on that the doctors can't really explain, which has been the story of my life for the past year -- well, the doctors (three orthopedic surgeons, three physical therapist's evaluations, a chiropractor, a pain management specialist, my primary doctor, a neurosurgeon, and a partridge in a pear tree) have done plenty of "explaining" but few of those explanations really fit what was going on with me, and none of the "solutions" they tossed at me have done any good so far. Knowing that even after I see a neurologist and have yet another round of tests, the answer may still simply be "you might have MS, let's see if things progress to the point where we can confirm that" is about the worst thing I can hear -- far worse to me than getting a definitive "you have MS" (or whatever other answer they might give me).

I'm looking for guidance and support from two directions.

First, how to get through the time between "you might have MS" until you're finally diagnosed, one way or the other? From everything I read, I recognize that for some people, this could take years, and the idea of spending any significant amount of time not knowing just flattens me.

Also, how do you deal with -- or find medical/therapeutic professionals to deal appropriately with -- symptoms that are not responding to standard treatments (for me, SI joint problems, sciatica, and low back pain, or at least pain that mimics those things)? I don't want to go in guns blazing and insist on (for example) getting set up with a PT who will address these problems as if they're MS symptoms even though I don't have that diagnosis, but it's clear that the traditional treatment's I've gotten have been ineffective, and my quality of life right now is seriously diminished as a result of the pain and weakness I'm experiencing. Do you push yourself as far as you can, even if it temporarily increases the pain or weakness or whatever? Or does really pushing yourself end up being bad in the long run? I"m used to pushing myself, but I've been reluctant to do that for a while for fear of exacerbating the physical problems that were supposedly at the root of all that's been ailing me, and now I'm scared to push myself for fear of exacerbating what could be MS symptoms.

FYI, I'm a 52 year old college professor and computer geek. My spouse and I are raising our two granddaughters, 5 and 15. I still habitually say that we're also really into working on fixing up our old house, but I've not been able to do much at all in the past year. My symptoms started last year when I started exercising regularly and trying to run. I started having a weak left leg - it just felt heavy and hard to move, and would get unstable if I tried to put my full weight on it for any period of time. They did a lumbar MRI, saw nothing of consequence, and just tossed me into PT for "low back pain" which I didn't have but I tried to be a "Good Patient" and went along. That progressed to SI-area pain, then later to sciatica-type pain, together with the weakness and a progressive amount of tingling - almost like my leg was "asleep" but is coming out of it but still feels thick and tingly. Through this I did 3 solid months of PT (plus some chiropractic) with no improvement. Then in May I started feeling that same weakness/tingling in my arm, which led to a cervical MRI that showed two bulging disks pressing against my spinal cord, along with a small amount of myelomalacia (according to the radiologist) and what the neurosurgeon interprets as a small MS-like lesion. No problems were found in the nerve tests done on my arm and leg, and I got only minimal relief from an SI joint injection done to help with the pain centered there. In the mean time, I also now find myself having that same thick/tingly feeling in my left torso (even the left side of my crotch, as if I just took a really long bike ride) and even up to the left side of my face. What I realize now likely adds to the neurosurgeon's guess of MS is that my symptoms are always far worse at night, and I totally can't deal with being too hot (I'm freezing my poor family and creating sky-high air conditioning bills) which I'd attributed just to being fairly newly in menopause, but which I now see could be an MS symptom. I'm also recognizing that some unexplained health problems in the past could also be connected, in particular a couple of extended periods (couple of months each) when I was just physically tired beyond anything I'd ever experienced.

I'm praying almost non-stop that the doctor is wrong and that I actually don't have MS. But what is even more important is to get answers and not be in this blasted limbo for any longer than I have to.

[lyndacarol]

Buela – The symptoms that you describe could very well be MS; they can also belong to MANY other conditions. In your list of doctors seen, I think your primary care physician would probably be the best one to work with. I hope he has established a baseline for you with a thorough physical exam and very thorough blood work, which would include tests for all thyroid hormones (disturbance can result in swings of body temperature), a test to establish your cortisol level, a vitamin D3 test (Jimmylegs's area of expertise, if you have questions), a "fasting blood insulin test" (this is NOT the same as a glucose or blood sugar test) – insulin is my particular focus because my insulin level is always on the elevated end of "normal" – I think hyperinsulinemia is involved in MS.

Check the Reading Nook for suggestions (especially Multiple Sclerosis: the History of a Disease by T Jock Murray).

Ask for copies of all your test results and start your own file at home.

Welcome to ThisIsMS; all the best to you.

[Buela]

Thanks for your response. I'm currently questioning whether I honestly trust my primary care to manage this for me (for several reasons) but I'm definitely going to keep him in the loop as much as I can, especially considering that he is the only one of all my current doctors who is local to me. My neurosurgeon (who is 90 miles away, but the doctor who I currently trust the most in this journey) did recommend a neurologist who has a one-day-a week-office within 20 miles, though most of my appointments will still likely be in their main office 90 miles away. What's difficult is that I've gone from being someone who thought nothing of driving 650 miles in a single day (with a teen and a toddler, no less), to someone who is physically a mess after just two hours in the car.

I digress...

I definitely want to read more on the possible connection with insulin. IF I do have MS, could this be the reason why my fasting blood sugar is typically just a little on the high side (though never over 110), even though my blood sugar levels otherwise give no sign of diabetes?

My thyroid was just checked, but I'll make a note to myself to ask doctor about bloodwork for lyme (which a few others have recommended - I'm in a high-risk area for lyme disease), cortisol, D3, and the fasting blood insulin test. Which of these are typically checked while researching for MS, and which are less common so that I might have to make a case for them -- and perhaps might have to verify that my insurance will cover them, since they've been known to balk at paying for tests that are not generally required for the symptoms presented.

I am definitely keeping all of the test results, MRI CDs, films and reports, and nerve test findings and reports.

[jimmylegs]

D3 is a good one to test for MS. as you may have read elsewhere by now, see if you can get a magnesium level too.

here you go sci-geek-gal ;)

http://www.nutritionalmagnesium.org/art ... iency.html

"The study found that those patients with lower fasting and after-meal blood glucose levels had higher blood magnesium levels while those patients with higher fasting glucose levels had lower blood magnesium levels and higher urine levels of magnesium. A full 82% of the diabetics studied showed that magnesium intake was insufficient with the lowest levels found in those with kidney complications. About 62% of the patients had low blood levels of magnesium."

also the 'normal' range for magnesium is 0.70-1.10 mmol/L but you need to be at least 0.90 in order not to show signs of suboptimal magnesium status.

i have full text access until Sep 15 if you want to see raw data

[jimmylegs]

arg, i couldn't help myself. they counted 'low' as </=0.75 mmol/L.

"low" patient group 0.66+/-0.06 (0.67) mmol/L serum Mg
"high" patient group 0.79+/-0.02 (0.79) mmol/L serum Mg

i wish they had had some healthy controls in there, so we could see all the ones in the .90 and up range :S

[lyndacarol]

Buela –
http://www.mercola.com/nutritionplan/index2.htm

Factor # 1 : Your Insulin Level
Insulin is absolutely essential to staying alive, but the sad fact is that most of you reading this have too much floating around, and it is pushing you towards chronic degenerative illness and increasing the rate at which you age.
Most adults have about one gallon of blood in their bodies and are quite surprised to learn that in that gallon, there is only one teaspoon of sugar! You only need one teaspoon of sugar at all times -- if that. If your blood sugar level were to rise to one tablespoon of sugar you would quickly go into a hyperglycemic coma and die.
Your body works very hard to prevent this by producing insulin to keep your blood sugar at the appropriate level. Any meal or snack high in grain and sugar carbohydrates typically generates a rapid rise in blood glucose. To compensate for this your pancreas secretes insulin into your bloodstream, which lowers your blood sugar to keep you from dying.
However, if you consume a diet consistently high in sugar and grains, over time your body becomes "sensitized" to insulin and requires more and more of it to get the job done. Eventually, you become insulin resistant, and then diabetic.
If you have high cholesterol, high blood pressure, type 2 diabetes, or are overweight, it is highly likely that you are eating too many grains -- yes, even unrefined whole grains -- as this is the most common culprit causing your insulin level to become abnormal.
Compounding the problem, when your insulin levels rise due to an excess of carbohydrates, they send your body a hormonal message telling it to store fat while holding on to the fat that is already there. So not only will excess carbohydrates make you overweight, they will effectively hamper your weight loss efforts too.
Your Fasting Blood Insulin Test
To find out your insulin levels, you need to get tested by your doctor. The test you need to ask for is a fasting blood insulin test, The test is done by just about every commercial laboratory and is relatively inexpensive.
Facts about Your Fasting Insulin Test:
• This test is profoundly useful. It's one of the least expensive tests in traditional medicine, yet it is one of the most powerful. A normal fasting blood insulin level is below 5, but ideally you'll want to be below 3.
• You can safely ignore the reference ranges from the lab as they are based on "normals" of a population that has highly-disturbed insulin levels.
• This is a great test to do BEFORE you start your program as you can use it to assess how well you are progressing in the program.
• If your level is above 5 you will want to consider significantly reducing most sugars and grains, even whole wheat grains, until you lower your level. Once you've normalized your insulin level you can reintroduce grains into your diet at a lower level to optimize your health.
• Exercise is of enormous benefit in improving the sensitivity of your insulin receptors, and help normalize your insulin level far more quickly.

To your question:

IF I do have MS, could this be the reason why my fasting blood sugar is typically just a little on the high side (though never over 110), even though my blood sugar levels otherwise give no sign of diabetes?

I think you are developing insulin resistance (the cells are becoming insensitive to insulin and do not allow it to open the door for your blood sugar to enter, i.e., allowing a higher sugar level to remain in your blood. In response to the continued high blood sugar, the pancreas secretes even more insulin – like shouting louder and longer to MAKE the cells listen.) In time, as the cells become more and more insulin resistant, your pancreas will pump out more and more insulin. I think this excess insulin causes the damage and symptoms of MS.

[karakiz]

Regarding magnesium, d3, and calcium test, its a good idea. Mine (mag and cal) was way down have been taking supplements for two weeks and cant tell you how much more energy I have and symptoms have decreased dramatically. JUST FOR YOUR İNFO, I TAKE R-ALPHA LIPOIC ACID, ACETYL L CARNITINE AND NIGELLA SATIVA OIL, I will let you know the results of my next mr.
Take care