No lesions on the brain = not MS?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

No lesions on the brain = not MS?

Postby bumblebee0513 » Mon Jul 21, 2014 5:20 am

Hello!

I am so glad I found this site. For years I have felt "crazy" because no one can figure out why I'm experiencing the symptoms I am. It looks like I'm definitely not alone, unfortunately.

At the end of high school (about 9-10 years ago) I started having debilitating migraines and had MRI and other scans done. In college I started getting the numbness/ tingling along with them. In my sophomore year I started having "spells" that went along with all the other symptoms. Sometimes I just tremor, other times it appears as though I'm having a grand mal seizure. I have had all kinds of testing done and everything comes back inconclusive or "normal". About three years ago I started getting severe nerve pain with all of the other symptoms. It often feels as though anything that touches my face or other areas of my skin are knives in my skin. These symptoms are not constant, however. I have learned my triggers, such as sitting in hard chairs, too much computer / tv time, flashing lights, etc. If I hurt my back - if something bumps into my spine or I fall and jolt my back I have spells for days. I get a sensation I can't describe in my back (since having my daughter it's now in my hips, too) before having a spell. Eventually, the spells and nerve pain subside and I go back to living normal life for a little while again.

The doctors (4 neurologists and many family and doctors at the hospital) cannot figure out what's causing these symptoms. All they say is they've never met anyone like me before. (Shouldn't that be a compliment?! ;) My daughter is 1 1/2 years old now, and it's getting very difficult to see her so effected by my spells. I need to find an answer. I have seen some similarities in my symptoms and MS, but the neurologist says I don't have lesions on my brain so it cannot be MS. I read that there could be lesions on my spine causing these. Has anyone heard of that or something like what I'm experiencing?

Thanks in advance for any ideas!
Brooke
bumblebee0513
Newbie
 
Posts: 1
Joined: Mon Jul 21, 2014 5:00 am

Advertisement

Re: No lesions on the brain = not MS?

Postby lyndacarol » Mon Jul 21, 2014 8:18 am

bumblebee0513 wrote:Hello!

I am so glad I found this site. For years I have felt "crazy" because no one can figure out why I'm experiencing the symptoms I am. It looks like I'm definitely not alone, unfortunately.

At the end of high school (about 9-10 years ago) I started having debilitating migraines and had MRI and other scans done. In college I started getting the numbness/ tingling along with them. In my sophomore year I started having "spells" that went along with all the other symptoms. Sometimes I just tremor, other times it appears as though I'm having a grand mal seizure. I have had all kinds of testing done and everything comes back inconclusive or "normal". About three years ago I started getting severe nerve pain with all of the other symptoms. It often feels as though anything that touches my face or other areas of my skin are knives in my skin. These symptoms are not constant, however. I have learned my triggers, such as sitting in hard chairs, too much computer / tv time, flashing lights, etc. If I hurt my back - if something bumps into my spine or I fall and jolt my back I have spells for days. I get a sensation I can't describe in my back (since having my daughter it's now in my hips, too) before having a spell. Eventually, the spells and nerve pain subside and I go back to living normal life for a little while again.

The doctors (4 neurologists and many family and doctors at the hospital) cannot figure out what's causing these symptoms. All they say is they've never met anyone like me before. (Shouldn't that be a compliment?! ;) My daughter is 1 1/2 years old now, and it's getting very difficult to see her so effected by my spells. I need to find an answer. I have seen some similarities in my symptoms and MS, but the neurologist says I don't have lesions on my brain so it cannot be MS. I read that there could be lesions on my spine causing these. Has anyone heard of that or something like what I'm experiencing?

Thanks in advance for any ideas!
Brooke

Welcome to ThisIsMS, Brooke (bumblebee0513). We are so glad that you found this site, too. And you are definitely NOT crazy!

You asked for "any ideas" so I offer you mine.

The symptoms you list are common to many conditions; MS is a differential diagnosis made by ruling out the more likely ones first. The "numbness/tingling" you have had is peripheral neuropathy; and the University of Chicago suggests the following for investigating peripheral neuropathy (Compare your "all kinds of testing done" to their guidelines.):

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

I think thorough testing (NOT just the B12 blood test alone) for the first condition listed (a B12 deficiency) is VERY important. In addition to the "oral glucose tolerance test," I think a "fasting serum insulin test" is also helpful (The optimal result for the insulin test is 3 UU/ML or lower, NOT the standard range of most labs.).

To your specific question about lesions being necessary for MS… My first three MRIs showed NO lesions. In my opinion, lesions are not the definitive symptom: people with MS-like symptoms can be found to have no lesions at all, while people with no symptoms have been found, upon autopsy, to have many. Like you, my other initial testing was "normal."

We wish you all the best.
User avatar
lyndacarol
Family Elder
 
Posts: 2351
Joined: Thu Dec 22, 2005 3:00 pm

Re: No lesions on the brain = not MS?

Postby euphoniaa » Mon Jul 21, 2014 10:48 am

bumblebee0513 wrote: I have seen some similarities in my symptoms and MS, but the neurologist says I don't have lesions on my brain so it cannot be MS.

I read that there could be lesions on my spine causing these. Has anyone heard of that or something like what I'm experiencing?


Hi bumblebee & welcome,

Your case sounds complicated and I wish you the best working with your team of doctors to figure it out. It's likely that you have more than one issue -- like many of the rest of us do -- so maybe you should be sent to a teaching hospital for a more thorough workup and opinions.

I have no real suggestions, except that, in my opinion:

1. I don't think your myriad symptoms - as troubling as they are - sound that much like MS symptoms.

2. MS lesions can turn up anywhere in the Central Nervous System (CNS) -- in either the brain or spinal cord or both. Many MS patients have ONLY spinal lesions.

I can't imagine why a neurologist wouldn't have checked that since you DO have some neurological -type symptoms. Generally, MRIs checking for MS include both brain and C-spine (cervical), although lesions can possibly end up in the lumbar and thoracic spinal area. That's why MY docs ordered MRIs of all 3 areas of my spine. No MS lesions, but I'm told that the other non-MS spinal issues that showed up on my spinal MRIs could be the cause of many of my symptoms.

Good luck!
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.)
User avatar
euphoniaa
Volunteer Moderator
 
Posts: 701
Joined: Sat Jul 15, 2006 2:00 pm
Location: midwest U.S.

Re: No lesions on the brain = not MS?

Postby lucediamore » Mon Jul 21, 2014 4:12 pm

Hi there,
I understand your frustrations and concerns. I have been battling the same issue since last Oct. It started with a lesion on optic nerve, followed by horrific migraines, numbness on the right side of my face, forgetfulness and issues with speech and pain in my neck.
They have done three dosages of steroids with no help along with Gapapentin and Topamax which was supposed to help with the headache.
My CP did show bands but it was also in my blood, all MRIs of the brain and spine are clear, just more lesion on both optic nerves.
The neuro that I am seeing will not diagnose me with MS because of the clear MRI and made it sound like it was absurd to have no lesions, but after reading many discussion boards, I find it's not. I am so frustrated and just want answers. My eye sight is awful and I am not able to work due the fact that the pain in the eye creates migraines beyond any help of a pill.
I am even wiling to travel to seek the opinion of another Neuro.
Any suggestions.
lucediamore
Newbie
 
Posts: 3
Joined: Mon Jul 21, 2014 4:03 pm

Re: No lesions on the brain = not MS?

Postby euphoniaa » Mon Jul 21, 2014 6:14 pm

lucediamore wrote:Hi there,

It started with a lesion on optic nerve, followed by horrific migraines, numbness on the right side of my face, forgetfulness and issues with speech and pain in my neck.

My CP did show bands but it was also in my blood, all MRIs of the brain and spine are clear, just more lesion on both optic nerves.

The neuro that I am seeing will not diagnose me with MS because of the clear MRI and made it sound like it was absurd to have no lesions,

Any suggestions.


Hi, lucediamore,

I hate to correct your doctor, but you DO have lesions in your Central Nervous System -- in your optic nerve!!! And you do NOT have a "clear MRI" and "no lesions" -- you have lesions in your CNS. MS attacks the CNS -- the brain, spinal cord, and optic nerve.

See the NMSS's definition here: http://www.nationalmssociety.org/What-i ... tion-of-MS

And I wish you well with your continuing issues -- and better doctors! It may be a good idea to travel to another neuro, like you suggested. Good luck!
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.)
User avatar
euphoniaa
Volunteer Moderator
 
Posts: 701
Joined: Sat Jul 15, 2006 2:00 pm
Location: midwest U.S.


Return to Undiagnosed

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service