How can he say that?

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How can he say that?

Postby Shanberger » Sun Sep 29, 2013 6:05 pm

Had Brain MRI w/wo contrast last week. Neuro left message on phone saying I do not have MS. But everything I read here contradicts his hard stance and my feet and ankles are still symptomatic with burning and tingling. So confused.
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Re: How can he say that?

Postby lyndacarol » Sun Sep 29, 2013 7:10 pm

Shanberger wrote:Had Brain MRI w/wo contrast last week. Neuro left message on phone saying I do not have MS. But everything I read here contradicts his hard stance and my feet and ankles are still symptomatic with burning and tingling. So confused.

MS is an exclusionary diagnosis made by ruling out all other possibilities. It can be a lengthy process. There is no one definitive test used to diagnose MS. The MRI is only one piece of evidence. In my own case, my first three MRIs were "normal" – I was not diagnosed until lesions were seen on my fourth MRI. Some people received the MS diagnosis based on symptoms alone; one member here had 14 years of "normal" annual MRIs before being diagnosed.

I suggest you start over – even with a new neurologist for a second opinion. Take a look at the following neuro exam guidelines; take a written list of your symptoms to discuss with your doctor (by the way, burning/tingling in your feet and ankles qualifies as peripheral neuropathy) and request especially the blood tests:

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 (tests for magnesium, zinc, and copper levels are also recommended by some TIMS members)
Thyroid, liver and kidney functions
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
Lyme disease (highly encouraged by other TIMS members)
HIV/AIDS
Hepatitis C and B

Request copies of your test results and keep your own file of these. All the best to you.
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: How can he say that?

Postby CureOrBust » Mon Sep 30, 2013 12:46 am

lyndacarol wrote:
Shanberger wrote:...Neuro left message on phone saying I do not have MS.

MS is an exclusionary diagnosis made by ruling out all other possibilities.

Not sure that I agree with the above 100%, but, if he has run all the tests, and does not believe you to have MS, then the obvious question to ask him is "then what do I have?"

Also, have you had more than 1 relapse? if not, its not MS but CIS. Check out the mcdonald criteria, that is the most commonly accepted checklist for a neuro to use. You will notice that some will take a years observation before a diagnosis can be made.
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Re: How can he say that?

Postby Shanberger » Mon Sep 30, 2013 4:01 am

What is CIS?
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Re: How can he say that?

Postby BadKittyCat » Mon Sep 30, 2013 6:12 am

CIS = clinically isolated syndrome

That is ONE MS-like relapse
MS requires more than 1 documented relapse
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Re: How can he say that?

Postby Shanberger » Mon Sep 30, 2013 8:28 am

do MS symptoms present with burning in ankles and feet bilaterally?
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Re: How can he say that?

Postby euphoniaa » Mon Sep 30, 2013 9:41 am

Shanberger wrote:do MS symptoms present with burning in ankles and feet bilaterally?

Although every single one of us has a completely different presentation, symptoms, course of our MS, no, I've never heard of that symptom specifically. I get a gazillion different parasthesias (weird sensations), but almost all of mine are likely due to my HNPP -- a hereditary peripheral neuropathy. The peripheral nerves are every single one outside the Central Nervous System (brain/spinal cord/optic nerve).
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: How can he say that?

Postby Shanberger » Mon Sep 30, 2013 1:21 pm

Next on the agenda is blood work to check B12 and various other blood tests. And then I think an EMG is scheduled in the next couple of weeks.
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Re: How can he say that?

Postby NHE » Mon Sep 30, 2013 8:38 pm

Shanberger wrote:What is CIS?


Please see this post in the Forums FAQ thread for commonly used abbreviations.
site-support-f2/topic5284-15.html#p210825
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Re: How can he say that?

Postby Shanberger » Wed Oct 02, 2013 9:33 am

Why would an EMG be the next diagnostic test?
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Re: How can he say that?

Postby euphoniaa » Wed Oct 02, 2013 9:53 am

Shanberger wrote:Why would an EMG be the next diagnostic test?


Hi Shanberger,

EMGs are used to test the possibility of neurological conditions of the muscles & Peripheral Nervous System – not the Central Nervous System. According to the NIH site linked here: http://www.nlm.nih.gov/medlineplus/ency ... 003929.htm

EMG is most often used when people have symptoms of weakness, and examination shows impaired muscle strength. It can help to tell the difference between muscle weakness caused by injury of a nerve attached to a muscle and weakness due to neurologic disorders.


Also, the EMG is NOT used to test for MS at all, but can hint at the possibility of the following looong list of NON-MS neurological conditions. My EMGs showed carpal-tunnel like nerve blockage of both my wrists & both my elbows, which pretty much assured that I have HNPP like my dad – a hereditary peripheral neuropathy.

Here's a list of those conditions that they look for through EMGs. Notice that MS is not one of them:
What Abnormal Results Mean
An EMG can detect problems with your muscles during rest or activity. Disorders or conditions that cause abnormal results include the following:
• Alcoholic neuropathy
• Amyotrophic lateral sclerosis (ALS)
• Axillary nerve dysfunction
• Becker's muscular dystrophy
• Brachial plexopathy
• Carpal tunnel syndrome
• Cervical spondylosis
• Common peroneal nerve dysfunction
• Denervation (reduced nerve stimulation of a muscle)
• Dermatomyositis
• Distal median nerve dysfunction
• Duchenne muscular dystrophy
• Facioscapulohumeral muscular dystrophy (Landouzy-Dejerine)
• Familial periodic paralysis
• Femoral nerve dysfunction
• Friedreich's ataxia
• Guillain-Barre syndrome
• Lambert-Eaton syndrome
• Mononeuritis multiplex
• Mononeuropathy
• Myopathy (muscle degeneration caused by a number of disorders, including muscular dystrophy)
• Myasthenia gravis
• Peripheral neuropathy
• Polymyositis
• Radial nerve dysfunction
• Sciatic nerve dysfunction
• Sensorimotor polyneuropathy
• Shy-Drager syndrome
• Thyrotoxic periodic paralysis
• Tibial nerve dysfunction


Good luck and keep us posted on your results.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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