undiagnosed....walk for a living and legs declining rapidly

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

undiagnosed....walk for a living and legs declining rapidly

Postby cmfender » Mon May 05, 2014 10:36 pm

I am a mail carrier. Have mri of brain indicative of ms. Ins wont pay for cervical thoracic mri. Rheumatoligist rules out everything and says its ms. On gabapentin, zanaflez and provigil now. But no diagnosis. Meanwhile...2 episodes to er and steroid injections. My legs have such spasticity i can hardly bend them. I walk through yards and rough terrain all day. Doctor put me to 5 days a week 6 hours a day. Now my knee is swollen from not being able to walk right. My legs are worthless. I cry as i try to walk. Mornings i have to hace help to get out of bed. All symptoms of ms are getting me. Cognitive..like i am drunk, bowel bladder spasticity like barbie legs....numbness heat intolerance. Etc. Vitamin d low. Spinal tap normal so neuroligist pretty much sent me on my way. Family doc got a second for me....he was not prepared for appt. Looked at no records before hand..he had all. Anyway. Now i am depressed and have no life after work as i cant move and fitigue is like coming out of anesthesia. Honestly...suicidal...i cant go on like this anymore. If not for my child...i would be done. How do you get throuvh this without losing your mind.
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Re: undiagnosed....walk for a living and legs declining rapi

Postby ElliotB » Tue May 06, 2014 3:17 am

Knowing that you will feel better soon helps. And you will feel better at some point. You just have to be patient. There are a lot of things you can do for yourself now to feel better sooner. Read the the various topics on this site.

Can you take time off of work until your sort things out/improve?
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Re: undiagnosed....walk for a living and legs declining rapi

Postby lyndacarol » Tue May 06, 2014 9:26 am

cmfender wrote:I am a mail carrier. Have mri of brain indicative of ms. Ins wont pay for cervical thoracic mri. Rheumatoligist rules out everything and says its ms. On gabapentin, zanaflez and provigil now. But no diagnosis. Meanwhile...2 episodes to er and steroid injections. My legs have such spasticity i can hardly bend them. I walk through yards and rough terrain all day. Doctor put me to 5 days a week 6 hours a day. Now my knee is swollen from not being able to walk right. My legs are worthless. I cry as i try to walk. Mornings i have to hace help to get out of bed. All symptoms of ms are getting me. Cognitive..like i am drunk, bowel bladder spasticity like barbie legs....numbness heat intolerance. Etc. Vitamin d low. Spinal tap normal so neuroligist pretty much sent me on my way. Family doc got a second for me....he was not prepared for appt. Looked at no records before hand..he had all. Anyway. Now i am depressed and have no life after work as i cant move and fatigue is like coming out of anesthesia. Honestly...suicidal...i cant go on like this anymore. If not for my child...i would be done. How do you get throuvh this without losing your mind.

Welcome to ThisIsMS, cmfender.

You may not have MS. The rheumatologist rules out "everything?" I assume, then, that he ordered all the following blood tests suggested by the University of Chicago: http://peripheralneuropathycenter.uchic ... #bloodtest

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
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

Be sure to ask for copies of all test results and keep your own file of them at home. (Don't settle for a nurse telling you everything is "fine.")

Starting with the first tests to rule out a vitamin B12 deficiency (serum B12 test, serum folic acid test, serum homocysteine test, urinary methylmalonic acid test) is very important because a B12 deficiency can cause many symptoms like yours.

http://www.youtube.com/watch?v=BvEizypoyO0

I highly recommend this 50-minute documentary, featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait ("not able to walk right")
Mental Impairment ("cognitive")
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema (This is swelling.)
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide


Testing for a gluten intolerance (or even celiac disease) is also important because gluten (found in wheat, rye, or barley) can damage the intestines in some people and interfere with the absorption of nutrients in the food. (Although vitamin D is also absorbed through the skin and your outdoor work should prevent your low vitamin D level.)

Even whole wheat is not the wonderful food for everyone – for some it raises blood sugar (a.k.a. glucose) causing the insulin level to spike. For any of several other reasons, your pancreas might be producing excess insulin, too. I think a "fasting blood insulin test" is also a good idea (This insulin test is NOT the same as a glucose test.).

If your rheumatologist or neurologists did not order these tests, your family doctor can order them.

We are here to share our experiences and answer your questions as best we can. We are good listeners. We are glad you found us.
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Re: undiagnosed....walk for a living and legs declining rapi

Postby HarryZ » Wed May 07, 2014 11:31 am

Sounds like you are getting the run-around 2-step from the docs, especially the neuros!! How frustrating.

If possible, can your family doc refer you to the closest MS clinic? All neuros are not created equally and if they don't have a lot of experience in diagnosing MS, you end up getting the kind of treatment that you are experiencing. Simply giving you medications to treat your symptoms isn't going to help you in the long run. Best of luck.

Harry
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Re: undiagnosed....walk for a living and legs declining rapi

Postby jimmylegs » Wed May 07, 2014 3:12 pm

I am a mail carrier. Have mri of brain indicative of ms. Ins wont pay for cervical thoracic mri. Rheumatoligist rules out everything and says its ms. On gabapentin, zanaflez and provigil now. But no diagnosis. Meanwhile...2 episodes to er and steroid injections. My legs have such spasticity i can hardly bend them. I walk through yards and rough terrain all day. Doctor put me to 5 days a week 6 hours a day. Now my knee is swollen from not being able to walk right. My legs are worthless. I cry as i try to walk. Mornings i have to hace help to get out of bed. All symptoms of ms are getting me. Cognitive..like i am drunk, bowel bladder spasticity like barbie legs....numbness heat intolerance. Etc. Vitamin d low. Spinal tap normal so neuroligist pretty much sent me on my way. Family doc got a second for me....he was not prepared for appt. Looked at no records before hand..he had all. Anyway. Now i am depressed and have no life after work as i cant move and fitigue is like coming out of anesthesia. Honestly...suicidal...i cant go on like this anymore. If not for my child...i would be done. How do you get throuvh this without losing your mind.
hi cmf welcome to the forum.
my 2c: your high level of activity, combined with spasticity, fatigue, and low vit D status (apparently in spite of working out of doors) make me want to ask you if you are currently meeting daily requirements for magnesium intake?

it would be great if you could get a test (if not approved, the test is not terribly unreasonable depending where you live, eg less than 20 USD here: http://www.lef.org/Vitamins-Supplements ... -Test.html )

if you an improve your mag status you will may see an improvement in d3 status. under similar exposures to sunlight and dietary d3, people with higher mag have higher d3 status, and those with lower mag have as little as half the serum vit d3 by comparison.

an easy first step would be to assess your dietary routine for basic magnesium intake in milligrams per day, as well as lifestyle elements that may contribute to magnesium depletion.

here is a table of healthy magnesium sources with amounts per serving.
http://www.whfoods.com/genpage.php?tnam ... #foodchart

you can also search foods you eat that are NOT on that list, and review for magnesium content from other (potentially less healthy) sources.
http://nutritiondata.self.com/tools/nutrient-search
note that much of the daily mag intake in the US anyway, comes from coffee and beer (diuretic so you pee it out right away) and french fries (not a recommended contributor to meeting daily targets!)

easy next steps to consider: just tally up how much you're getting per day, and we can go from there :)

related studies:

activity:
New experimental and clinical data on the relationship between magnesium and sport.
http://europepmc.org/abstract/MED/21336 ... yfsX4X8.24
"Exercise under certain conditions appears to lead to Mg depletion and may worsen a state of deficiency when Mg intake is inadequate ... prolonged submaximal exercise is accompanied by hypomagnesaemia"

spasticity:
The effect of magnesium oral therapy on spasticity in a patient with multiple sclerosis
http://www.ncbi.nlm.nih.gov/pubmed/11136367

fatigue:
The relationship between serum trace element levels and clinical parameters in patients with fibromyalgia
http://link.springer.com/article/10.100 ... 008-0593-9
Association between ... fatigue and magnesium level (P = 0.003) was found as meaningful.

low vit d3:
Determinants of vitamin D status in patients with hip fracture and in elderly control subjects
http://ajcn.nutrition.org/content/46/6/1005.full.pdf
details and ongoing related TiMS discussion here:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic14805-765.html#p224934

caution:
The underestimated problem of using serum magnesium measurements to exclude magnesium deficiency in adults; a health warning is needed for "normal" results.
http://www.ncbi.nlm.nih.gov/pubmed/20170394

the takeaway point here is that if you have a serum test it will almost invariably come back 'normal' - high normal serum mag is required to ensure healthy status. deficiency conditions have been recorded at levels within the entire lower half of the normal range.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: undiagnosed....walk for a living and legs declining rapi

Postby bonzo » Tue Jun 03, 2014 12:23 pm

Get tests for Lyme Disease
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