Spinal MS

[aladams80]

I have an issue where I live. There are few specialist in this field. I have some medical training and see lesions on my spinal chord which leads me to blieve I have ppms. My brain scan is normal. They are visible on axial and sagital views and in localizer mode they point right to what I'm looking at in all of my different weighted images. I would seek a second opinion elsewhere but my insurance isn't accepted at many places. I need an MS specialist. I have, over the last 6 years had worsening symtoms and just thought I had a bad neck and back which I do but the lesions no one else seems too concerned about have me worried. I have done my homework. I have every symptom associated with MS. Negative blood tests except for possitive inflammation. I have images but can't post them. That should be changed on this forum. I'm 35 and Caucasian male. If anyone knows what they're talking about please give me a hand.

Thank you!

[ElliotB]

You have answered your own question as far as what you need to do next " I need an MS specialist."

Keep in mind that some with MS present no lesions and that there are about 400 illnesses that mimic the symptoms of MS.

Regardless of what you have, you obviously have something and in addition to getting an accurate diagnosis so you can seek out appropriate treatment if so desired, you need to concentrate on your health especially with regard to diet and supplements, exercise, and lifestyle (eliminating all stress from your life).

[NHE]

I have images but can't post them. That should be changed on this forum. I'm 35 and Caucasian male.

It is possible to post images to the forum. Please see the following post in the Forums FAQ topic.
http://www.thisisms.com/forum/site-supp ... tml#p40760

By the way, diagnosing yourself with PPMS is not a good idea. PPMS is like getting slowly run over by a bulldozer. A person with PPMS can go from walking to needing a motorized scooter within 2 years give or take. There are several conditions which can mimic MS. One of these is B12 deficiency. If you're experiencing neurological symptoms, then it would be best to ask your regular doctor for B12 tests, i.e., serum B12, red blood cell (RBC) folate, homocysteine and methylmalonic acid (MMA). You can learn more about B12 from the following discussion topic. http://www.thisisms.com/forum/natural-a ... 24857.html

B12 deficiency can cause spinal cord lesions known as subacute combined degeneration. You can view examples of this damage at http://radiopaedia.org/articles/subacut ... the-cord-1

[aladams80]

http://s1098.photobucket.com/user/alrob ... d.jpg.html

[aladams80]

Thanks for the help. As I stated before all blood tests were negative. They were very thorough.

[NHE]

Thanks for the help. As I stated before all blood tests were negative. They were very thorough.

Do you have test results for B12, RBC folate, homocysteine and MMA?

[aladams80]

B12 is normal so no homocysteine or mma was needed. Folic acid is normal.

[lyndacarol]

B12 is normal so no homocysteine or mma was needed. Folic acid is normal.

There is a debate over what is normal. Experts consider the standard range for serum B12 set in most US labs to be too low. What is the standard range for "normal" in your lab?

In the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/ the authors write:

On page 11:

There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury.

Compare your B12 test numbers to those recommended by the authors.

[aladams80]

My range is [211-946] My count is 408. In any case, my concern is in the image I posted. Basically I would like to know If it something I should be concerned about. http://s1098.photobucket.com/user/alrob ... d.jpg.html

[aladams80]

Still, no one has commented on my Mri image.

[NHE]

Still, no one has commented on my Mri image.

Well, the MRI image you made available shows lesions in the C spine area. The question is what is the cause of those lesions. What is your doctor's interpretation of the MRI?

[aladams80]

Every doctor who has seen my mri has shrugged it off. My neurologist isn't a specialist in this area. He does however see what I'm pointing out to him. He has referred to a Dr. Krain in Cedar Rapids who is an MS specialist.

[lyndacarol]

Every doctor who has seen my mri has shrugged it off. My neurologist isn't a specialist in this area. He does however see what I'm pointing out to him. He has referred to a Dr. Krain in Cedar Rapids who is an MS specialist.

Please allow me a couple comments: I have no medical background, but I seem to recall hearing that lesions can come and go over time. Have you had more than one MRI over the six years of worsening symptoms?

If you have been referred to a specialist in Cedar Rapids, there must be one or more specialists in Iowa City as well. Have you considered any one of these?

Iowa City is the location of Dr. Terry Wahls. Her website (http://www.TerryWahls.com), her book, The Wahls Protocol, and The Wahls Diet Discussion in the Diet forum (http://www.thisisms.com/forum/diet-f9/topic17276.html) may interest you.

You will find videos and information about Dr. Wahls, her diagnosis with MS, and dramatic improvement with her own plan of diet and neuromuscular stimulation (NMES). She has and is conducting clinical trials of her regimen on MS patients. You might consider contacting her.

Dr. Terry Wahls is an internist:

Terry L. Wahls, MD, MBA
VA Iowa City VAMC
U of I Carver College of Medicine
601 Highway 6 West
Iowa City, IA 52246

[aladams80]

I started in Iowa City. 3 different neurosurgeons weren't even the least bit concerned about the lesions. Then after 6 months of back and forth having possitive eng test on my arm and legs they said there was nothing they could do about my back and neck. So I'm pretty much done going there.
Thank you for your input though. I just don't want to be anyone's guinea pig. I think I am on the right track to getting a correct diagnoses.

[NHE]

B12 deficiency can cause spinal cord lesions known as subacute combined degeneration. You can view examples of this damage at http://radiopaedia.org/articles/subacut ... the-cord-1

Did you look at the images on the Radiopaedia site? The lesions in the MRI you posted look more similar to SCD than MS (at least in my "2 ¢ worth"). MS spinal lesions tend to be more punctate. What did the radiologist's report have to say?

Medscape has a good article on MS diagnosis.
http://emedicine.medscape.com/article/1146199-overview

See the Differential Diagnosis section for other conditions which can mimic MS.
http://emedicine.medscape.com/article/1 ... fferential