This Is MS Multiple Sclerosis Knowledge & Support Community

Hello everyone,

For the past few years, I've been going through bouts of extreme fatigue. My legs are very, very sore (specifically my calves) and can ache regardless of what i'm doing. The ache feels right alongside the shin bone, and is deep and is accompanied by tingling in my feet and lower legs.

I feel like the muscles in my legs are so tight that I can't move them and walk properly as they won't allow it, so I walk more side to side. This gets worse especially after I've had a hot shower. I'm very sensitive to cold or heat. Going up stairs sometimes can make me out of breath, and make my muscles burn. Going down stairs a lot of the time is difficult as I feel my muscles won't allow free movement so I hobble down them or at a weird angle.

I experience sharp, shooting, electric, tingling pains that can originate anywhere in my body and are quite painful. I've also been experiencing numbness in my arm and leg of my right side. I also feel a dull ache behind my right eye sometimes, and will twitch.

RA, Lupus, infection, Lyme Disease, bone cancer, inflammation, b12 deficiency have all been ruled out.

Last week at the Dr.'s he got me to do some balance tests, as well as to check my gait, and some of my reflexes. He did not like my gait (it was wide), nor my balance, and said that my lower legs were somewhat weakened as well. He is now referring me to a neurologist, and I have a CT scan this Thursday to rule out tumor, mild stroke, degeneration of the cerebellum.

Are these symptoms in accordance with MS symptoms?

Thank you so much for your time and any reply is greatly appreciated!

Please get your magnesium level in blood checked also. I suggest start taking LDN immediately and get yourself checked for CCSVI. Best of luck.

Sounds a lot like MS. Do what you can now to try to slow this down! Go to the nutrition board and start Vit D3, magnesium, zinc, calcium, malic acid, various antioxidants, etc. See if you can get a script for Naltrexone, either as LDN or as a full dose that you can dilute down. (There are lots of threads on all of these things.) And get on a good MS diet.

Checking into CCSVI would be good. If you have the funds, stem cell treatment may be an option is MS is confirmed.

The thing is to try to take some control of this disease.

To me this sounds nothing like MS and everything like Bartonella. Do you know what Shin Bone Fever is? Look it up. And if you have Bartonella, than you probably also have babesia and borrelia. MS mimics these infections aka Chronic Lyme Disease. FYI. MY cousin diagnosed with MS in 1995, only to discover in 2009 positive for the three infections above + mycoplasma pn and chlamydia pn. Since taking minocycline, some ivig and being on the wheldon protocol he has improved greatly. From near death to able to live, still not totally healthy but able to function. No relapses since starting minocycline. It's along road but the antibiotics work...find an LLMD. Go over to a Lyme disease forum and they will lead you to help.

Thank you all so much for your advice and posts. Waiting in limbo land is never fun.

welcome this,

a lot of different diseases cause a lot of similar problems. while the docs are figuring out your case, you might want to look at your magnesium levels to deal with fatigue and pain. review your current diet and lifestyle for magnesium inputs and outputs, see if there are any changes that need to be made. maybe ask the doc for a serum magnesium test - if you do, ensure your level is at least 0.90 mmol/L ('normal' range is 0.70-1.10). if you decide a supplement is needed, be very sure to choose a soluble, organic form such as magnesium glycinate.

read more re magnesium: http://whfoods.org/genpage.php?tname=nutrient&dbid=75

may i ask what the b12 level was, including units? glad to see they ran that test at least, not sure testing b12 is as routine as it should be.

your description of the ache behind your eye is one i had too. do you happen to notice it more when you're moving at speed? when i had that going on, i was learning about zinc. when i had my levels tested, i was deficient. when i optimized my zinc status, the ache resolved and has never returned. at the same time my cognitive function improved dramatically. zinc is fundamentally important to a wide range of processes in the body. along with selenium, it's very important in the antifungal, antibacterial, and antiviral department. correcting my zinc status also improved my uric acid status, and tripled my absorption of vitamin d3. so a serum zinc test may be telling for you too. aim for 18 umol/L ('normal' range 11.5-18.5).

more info on zinc and selenium:

http://whfoods.org/genpage.php?tname=nutrient&dbid=115

http://www.whfoods.com/genpage.php?dbid ... e=nutrient

If there is a possibility that you have ms get your affairs in order. No one seems to talk about this much but with hindsight being 20/20 I wish I had signed up for long term care insurance. This is not long term disability. It is another insurance policy that will help pay for the need of an in home nurse or other help in the future if your condition leads to it. If you have a dx like ms or something akin to it it's very hard to get this insurance. When this was offered to me I was at the peak of fitness - running 5 miles a day. I had the ekg of a marathon runner. The possibility of ms or any other disorder never even crossed my mind. None of us are invincible but I hope that you don't have ms.

jimmylegs- My first bloodwork showed a very low b12 reading (140) but after taking b12 orally for two weeks, I went back for more bloodwork and my b12 levels shot right back up into the 300's, so b12 deficiency was ruled out by my Dr.

Went for the CT today, and hoping to get the results from that within the next week or so. I'm thinking that it will just rule out tumor, stroke, etc. I don't believe that those issues are what is affecting me. I will look into my magnesium levels, and CCSVI now.

Thanks for the advice re medical insurance ssmme, I was actually looking into that this past week.

hi there, oh my gosh are you kidding??? a chronic b12 issue is not going to magically evaporate by supplementing for a couple of weeks! if you were that low as your status quo prior to your first test, you could have classic b12 deficiency spinal cord issues. b12 deficiency subacute combined degeneration of the spinal cord is notoriously slow to resolve, if it ever does.

read this and ask me any questions if you need something clarified. i'm a poster child for b12 deficiency.
http://neuromuscular.wustl.edu/nother/vitamin.htm#B12

Excerpts:

"Clinical features
CNS
Spinal cord: Earliest locus of involvement
Major cause of sensory & motor disability
Posterior column fiber loss
Spasticity in legs
Similar clinical features to N2O toxicity
...
Testing
Serum
Low B12
Clinically significant: < 100 pg/ml
Suspicious: < 200 pg/ml
MRI
Hyperintense T2 lesions in posterior columns (50%)
Lesions resolve after 8 to 12 months of therapy
...
Prognosis: Stabilization, or Some improvement
Paresthesias
Resolve within weeks
Rarely transient exacerbation after treatment
Myelopathy changes slowly if at all"

the good news is that you responded easily to supplementation, so your system is readily able to absorb it. and by the way 300 just isn't good enough. if you send me the units i can tell you if that level is bad or worse, but in pmol/L i personally aim for minimum 500. any lower and you can show cognitive deficits. deficiency is only assessed on visible hematological criteria - pretty bad.

here's a list of healthy b12 rich foods, how is your dietary intake of these typically?
http://www.whfoods.com/genpage.php?tnam ... t&dbid=107
"Excellent sources of vitamin B12 are .... limited to animal foods. These foods include snapper and calf's liver. Very good sources of vitamin B12 include venison, shrimp, scallops, and salmon."

good to hear you'll look into magnesium. please don't pass over a serum zinc test, it's really an important one.
zinc rich foods: http://whfoods.org/genpage.php?tname=nutrient&dbid=115
please note that the amount of gluten grains in your diet will strongly influence your zinc levels. dietary gluten draws on your body's zinc resources.

do you know why your b12 levels would have gotten that low? there is a long list of possible causes if you read through that neuromuscular uwstl.edu link above. one or more of them might ring a bell.

Sorry that it has taken me so long to reply.

At this point in time, I've had MRI's of my head, and my spine w/o contrast on a 1.5 MRI machine that came back normal. My neurological exam (which I've had more than a couple of times at this point) continues to come back with positive Romberg, positive pronator drift, intention tremor, loss of proprioception etc.

My neuro was thinking along the lines of b12 and degeneration of the dorsal columns, but with more b12 testing (my levels were above 500 w/o any supplementation) and homocysteine, and MMA coming back normal, my GP has ruled out that it has nothing to do with b12. I'm awaiting my neuro appointment next visit as I haven't seen him since getting those bloodwork results back.

The neuro sent me for nerve conduction study tests- which all came back normal a few weeks ago as well.

Unfortunately, my symptoms have not subsided. My legs are feeling ridiculously tight (especially my right one), I find it difficult to walk up and down stairs due to the tightness, my tremor in my right arm has gotten worse, and my hips/lower back are constantly so sore (I think it's due to my abnormal gait). I feel muscle spasms in my legs, and all the way into my buttocks, and thigh. The other day my vision in my left eye went blurry, and at at times I am dropping things, and can't grip anything as pain in my two outside fingers in my right hand.

It's frustrating as the doc's really haven't been able to find anything...I just feel like giving up.

This is my opportunity to welcome you to ThisIsMS, thisperson. MS shares symptoms with so many other conditions – has your GP ruled out a thyroid problem?

I think that excess insulin is responsible for many of my MS symptoms. I think this imbalance of the hormone insulin causes other hormone imbalances – possibly thyroid hormones in your case. These are common symptoms of an underactive thyroid; might you have any besides fatigue and sensitivity to cold? Brittle or thinning hair is one of the signs of a problem in the thyroid gland (underactive thyroid a.k.a. hypothyroidism). Other symptoms can include feeling tired (unrelenting fatigue), cold all the time, hair and memory loss, brittle nails, leg swelling, constipation, loss of the outer third of eyebrows, weight gain and difficulty losing weight (Weight gain is also connected to insulin.). A simple home test can also indicate underactive thyroid: if you take your basal body temperature (in the morning before getting out of bed) every morning for a week and it is consistently below 98°, you may have an underactive thyroid. Recently, I came across the following information: "Many medications also slow down the thyroid and also cause iodine deficiency. Lithium and corticosteroids are thyroid-slowing and should be used sparingly if at all."

Thyroid problems can also be caused by iodine deficiency, as discussed on The Dr. Oz Show with Dr. Andrew Weil: http://www.doctoroz.com/episode/andrew- ... ideo=15632 "Puffy eyes" as pictured in video are another symptom of a thyroid problem. Perhaps your doctor could test your iodine level?

In addition, I urge you to request a "fasting blood insulin test" and a series of thyroid hormone tests (TSH, Free T4 , Free T3 , Total T3, Reverse T3, and antithyroid antibodies). If your doctor says your blood tests are fine, please realize that most thyroid tests aren't articulate enough always to catch the problems – watch your symptoms closely; they can be a better gauge. The optimal insulin test result should be 3 UU/ML or lower.

From this day forward, I encourage you to eat a healthy diet (a good idea for everyone – with MS or not). Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar and trigger insulin production), removing all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), removing all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. I think that excess insulin plays a great part in MS and suspect that Fatty Liver Disease is also involved (Has your doctor checked your liver?). Diet is important. You may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).

All the best to you.

Thank you for the welcome, and the response.

Yes thyroid has been ruled out as well as b12, folate deficiency, lupus, lyme disease, RA, fibromyalgia, homocysteine, vitamin D, magnesium, etc. I've had every blood test you can imagine run on me, and it's all come back normal.

I didn't see a "fasting blood insulin test"in your list:

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.


Insulin resistance in your skeletal muscles could explain your muscle symptoms – spasms and tightness. Maybe a good topic of discussion with your GP or internist? Keep searching; DON'T give up!

good news re the b12 being up there. do you have the actual numbers for vit d3 and magnesium? ms patients often have results that are 'normal' but it just means they match all the other sick people who went to the same lab. if your serum mag level was below 0.9 mmol/L the test would still come back 'normal' but it could still be a problem.