Anyone think my MRI Images are MS? MS Specialist says no.

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oddity
Regular Member


Date Joined Dec 2015
Total Posts : 59
   Posted 7/23/2016 2:25 PM (GMT -6)   
The MS Specialist says this is not MS. Current symptoms are mainly itchy bilateral pain in both legs, which is intermittent. The weirdest symptom is a cold pain in both calves. This is more pronounced in the afternoons. I live in a very hot climate and I am almost to the point that I cannot wear shorts anymore because of this. Another symptom is after I have been on my feet for sometime I get a thumping or pounding with some pain in my left shin. My teeth chatter when I am not cold.

The MS Specialist says I have Small Fiber Neuropathy and not MS. All MRI's of spine are negative. Lumbar Puncture - negative. All bloodwork is normal. My age: 46. I had another MRI 7 months prior to the images below and there was no change. This is one of the reasons the MS Specialist says not MS.

You may need to cut and paste this in your browser.
http://s1067.photobucket.com/user/oddity11/library/

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3491
   Posted 7/23/2016 4:58 PM (GMT -6)   
Hi Oddity,

Here you are saying your doctor doesn't think it's MS, but on the Lyme board you said your neurologist is going down the MS path. I'm confused.

Also, did you know that Lyme disease can cause brain lesions?
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

oddity
Regular Member


Date Joined Dec 2015
Total Posts : 59
   Posted 7/23/2016 8:34 PM (GMT -6)   
Hi Gretchen,
I have actually seen 3 neurologist over the past year. The second neurologist, who is not an MS Specialist hinted that my symptoms were most likely from Ms. She was also in another state that I do not live in. After I saw her I felt it best to seek out an MS Specialist in my state.
After I had gone in the Cleveland Clinic's 3T machine ordered by the MS Specialist I was mentally prepared to receive an official MS Diagnosis. When she told me I did not have ms but rather small fiber neuropathy I was baffled. I know about SFN. This diagnosis was a shock especially when no biopsy had been performed to confirm the diagnosis.
I know I don't meet the McDonald criteria, but my continuous symptoms are disheartening.
I have been tested a few times for Lymes. As soon as I received the diagnosis of Sfn I went right to my naturopath who recommended a top infectious disease doctor who is also LLMD. He is doing a bunch of labs to look for confections etc.
I have my follow-up with him on Tuesday. So far I am a conundrum. :(

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3491
   Posted 7/23/2016 9:11 PM (GMT -6)   
Keep us posted.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Sue Story
New Member


Date Joined Sep 2015
Total Posts : 6
   Posted 12/28/2016 12:59 PM (GMT -6)   
I was diagnosed with MS back in 2003. Prior to that I had gong to see an optometrist who, after giving me new glasses, referred me to a neurologist.

Later, I found out that optometrists can see MS on our retinas (looks like lightning strikes). Went to a neurologist and the rest is history.

The only thing, other than weakness in my leg muscles, that I deal with is cold feet. My feet are so cold that I sleep with socks on my feet.

Sue Story
New Member


Date Joined Sep 2015
Total Posts : 6
   Posted 12/28/2016 1:08 PM (GMT -6)   
Would have helped if I had re-read the post before submitting.
ll
I was diagnosed with MS back in 2003. I probably had it since 1998. Back in 1998 I was having trouble walking and had to use a grocery cart (not for food, but to keep my balance).

A mri will be totally black. If it shows any white streaks going though the brain, that is MS strikes. No strikes, no MS.

oddity
Regular Member


Date Joined Dec 2015
Total Posts : 59
   Posted 12/28/2016 1:48 PM (GMT -6)   
I'm not sure what you mean by streaks? I have tiny spots all throughout my subcortical region bilaterally. I have recently received a small fiber neuropathy biopsy which confirmed non-length dependent small fiber neuropathy. The cause of this is unknown, although I strongly feel this is from a virus or bacterial infection. Unfortunately, I am only 47 so life has been a challenge for the past 2 years.

Sue Story
New Member


Date Joined Sep 2015
Total Posts : 6
   Posted 12/29/2016 5:49 AM (GMT -6)   
Our brain is normally totally black. Mine looks like lightening is striking throughout.

If you see a neurologist he/she will also give you a spinal tap to confirm MS.

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 183
   Posted 12/29/2016 7:24 AM (GMT -6)   
Sue Story,

There is no such thing as "lightening strikes" or "white streaks" going through the brain in the case of Multiple Sclerosis. A MRI is never totally black --- under no circumstance.

Multiple Sclerosis cannot be found on the Retina. An Ophthalmologist can see if the optic nerve has any sign of damage which MIGHT indicate a possibility of MS.

There is no single test, by it's self, that can give a definitive diagnosis of MS.

Oddity, I am sorry you have Small Fiber Neuropathy and I wish you all the best.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3491
   Posted 12/29/2016 1:32 PM (GMT -6)   
Snoopy,

You are so knowledgeable. Have you considered becoming a moderator? We benefit so much from your experience and wisdom.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 183
   Posted 12/31/2016 1:24 PM (GMT -6)   
Gretchen1 said...
Snoopy,

You are so knowledgeable. Have you considered becoming a moderator? We benefit so much from your experience and wisdom.


That's very kind of you Gretchen. I honestly have not currently given it any thought but I had been a Moderator on another forum quite some years ago.

Chris_1234
Regular Member


Date Joined Mar 2015
Total Posts : 85
   Posted 1/8/2017 11:27 AM (GMT -6)   
Interesting. I've had the same rash as you've had on my back as well. Whether it has anything to do directly with what's going on with you, your guess is as good as mine. Since I'm quite physically active, my primary care physician contributed my rash to sweat, heat, and irritation from my clothing. None the less, mine went away after I changed my diet.

Have you had a neuroradiologist interpret your scans?
Have you had a lumbar puncture?
Have you been tested for Lyme Disease?

https://radiopaedia.org/articles/multiple-sclerosis

http://pubs.rsna.org/doi/full/10.1148/radiol.2531081103

http://www.radiologyassistant.nl/en/p4556dea65db62/multiple-sclerosis.html
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