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.
The MS Specialist says I have Small Fiber Neuropathy and not MS. I have stated this in prior posts. All MRI's of spine are negative. Lumbar Puncture - negative. All bloodwork is normal. My age: 46.
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http://s1067.photobucket.com/
MRI Images linked - looking for knowledgeable opinions.
Re: MRI Images linked - looking for knowledgeable opinions.
if you doubt the opinion of the medical specialist you are seeing, seek out another specialist. This is what I did.
Re: MRI Images linked - looking for knowledgeable opinions.
That's the funny thing. I went to a regular neurologist initially. She said it very well could be MS. Let's just say she made some mistakes such as allowing me to go into an open MRI with only .7 Tesla. This was my second MRI after my first, in a 1.5T machine, showed numerous non-specific lesions. After the neurologist looked at the .7 open MRI images (this low tesla machine only showed 1 or 2 lesions!) she said, well we can wait and see and have you do another MRI in a year. That's when I decided to push for a referral to the MS Specialist at the Cleveland Clinic.
Re: MRI Images linked - looking for knowledgeable opinions.
When is your appointment at the Cleveland Clinic? (that is where I was diagnosed.)
Re: MRI Images linked - looking for knowledgeable opinions.
The Cleveland Clinic is where the MS specialist I saw is at. I have had my initial assessment there where the specialist looked at the two previous MRI's I had. The specialist said the .7 open MRI images were worthless. She looked at the 1.5T results and said this did not look like MS to her, but she said I would need to go in their 3.0T machine. These are the images I have posted.
I had my followup at Cleveland Clinic 2 weeks ago where the specialist compared my 3.0 images with the 7 months prior 1.5T images and she concluded I did not have MS. That's when she gave me the dx of Small Fiber Neuropathy.
I had my followup at Cleveland Clinic 2 weeks ago where the specialist compared my 3.0 images with the 7 months prior 1.5T images and she concluded I did not have MS. That's when she gave me the dx of Small Fiber Neuropathy.
Re: MRI Images linked - looking for knowledgeable opinions.
This page might have some helpful info...
Is it small fiber neuropathy or MS?
http://www.healthcarejourney.com/q--a-f ... athy-or-ms
Is it small fiber neuropathy or MS?
http://www.healthcarejourney.com/q--a-f ... athy-or-ms
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LizardKing
- Family Member
- Posts: 34
- Joined: Thu Jun 23, 2016 8:01 am
Re: MRI Images linked - looking for knowledgeable opinions.
Isn't there a test for SFN that requires a skin sample?
Did you have some flesh taken from your leg?
Did you have some flesh taken from your leg?
Re: MRI Images linked - looking for knowledgeable opinions.
When the MS Specialist shocked me with that diagnosis, I was fully prepared to receive an MS diagnosis, I said to her then we should get a biopsy for that. She said her Cleveland Clinic location did not perform this test. She said the ones they had done in the past were contaminated so she does not have them done anymore. She said the test would not change her diagnosis either way. I pressed on the issue and she said she could give me a name of another neurologist that could perform the biopsy. At that point I was so dejected I passed on seeing another doctor. I do have the option to still get that referral, but my resources are limited at this point.
From what others have told me in this forum and other forums is that the SFN test is fairly easy. I am baffled how a provider can make that diagnosis without a clinical confirmation via test.
I'm seeing a regular neurologist in California at the end of this month. I kept this appointment just so I can discuss the MS Specialists 3T MRI and diagnosis.
From what others have told me in this forum and other forums is that the SFN test is fairly easy. I am baffled how a provider can make that diagnosis without a clinical confirmation via test.
I'm seeing a regular neurologist in California at the end of this month. I kept this appointment just so I can discuss the MS Specialists 3T MRI and diagnosis.
Re: MRI Images linked - looking for knowledgeable opinions.
You state you are looking for "knowledgeable opinions". Why do you doubt The Cleveland Clinic's diagnosis?
I am not familiar with SFN so I did a bit of research and found you can do the skin test yourself here:
https://www.therapath.com/tests/skin-te ... neuropathy
Although after looking at the video, this test should probably be done at a doctor's office by a doctor.
Good luck and hope you are feeling better soon!
I am not familiar with SFN so I did a bit of research and found you can do the skin test yourself here:
https://www.therapath.com/tests/skin-te ... neuropathy
Although after looking at the video, this test should probably be done at a doctor's office by a doctor.
Good luck and hope you are feeling better soon!
Re: MRI Images linked - looking for knowledgeable opinions.
I was under the impression that the C Clinic would have tested further to continue to rule out MS. Things like evoked potential tests, etc. I had also originally been to a well respected neurologist in California who had strongly hinted that my symptoms were due to MS. I then felt it appropriate to seek out an MS specialist in the state that I live in. The C Clinic appeared to be the only game in town that touted an MS Specialist.
My second meeting with the MS Specialist seemed to be rushed and the answer I received when I asked about doing the SFN biopsy seemed unprofessional. Everything I have read about SFN states a biopsy is an easy test to either rule in or rule out the diagnosis. If your facility can't perform it then you should probably have an agreement with an outside reputable lab or ASC where your patient's can be sent to confirm the diagnosis.
Here is a link to an interesting article on SFN along with a question and answer section. https://neuropathyjournal.org/small-fiber-neuropathy/
My second meeting with the MS Specialist seemed to be rushed and the answer I received when I asked about doing the SFN biopsy seemed unprofessional. Everything I have read about SFN states a biopsy is an easy test to either rule in or rule out the diagnosis. If your facility can't perform it then you should probably have an agreement with an outside reputable lab or ASC where your patient's can be sent to confirm the diagnosis.
Here is a link to an interesting article on SFN along with a question and answer section. https://neuropathyjournal.org/small-fiber-neuropathy/
Re: MRI Images linked - looking for knowledgeable opinions.
Hi
I have a question. Its about MRI reading.
I just had an MRI done two weeks ago. It was open MRI without contrast. When my GP got the result he told me he doesn't think that it's big deal. He was not agreeing with radiologist. But I insist to see a neurologist.so I saw one last week. He was an old guy puffed up with his 40 years of experience in the field. He checked on my reflexes then made me walk back and forth and told me no he also don't think that I have MS. Beacuse the images and symptoms should match.
He also told me that he'll take a look on my MRI and call me. After a day he called me to tell me to do another MRI with contrast this time. But still he told me people with headache can have white spots.
Here is my MRI result.
Findings:
Normal Configuration of the intracranial compartment and posterior fossa. There is no hydrocephalus, intracranial mass, hemorrhage, diffusion restriction or significant abnormality demonstrated extracranially. Several nonspecific punctuate FLAIR in distribution. In pationet of this age, these are atypical, and could be
inflammatory-infections, demyelinating, chronic migraine, vascular, and not completely excluding Vasculitis. Intracranial dominant flow-voids are identified in usual fashion.
Impression: Tiny scattered frontoparieatal FLAIR hyperintensities are distributed largely peripheral. In a pationet of this age, with this MRI appearance, it could be due to variety of etiologies. Further work up is therefore recommended clinically. Further work up is therefore recommended clinically. Further radiographic work up may include MRI using Gadavist, cervical MRI if indicate, and follow up MRI for stability advised The thing is that I had headache but I don't remember I had migraines.
So how and why i got third spots I don't understand and how they can be normal.
If they are nonspecific then why he asked for second MRI? I am 37 years old and based on my age both my dr and the nerou dismissed other possibilities that radiyologyst suggested.
My dr ran many tests for inflammation and ANA test. ESR, C-receptive and many others all came back negative.
But the MRI result got me anxious and worried specially in the part saying for my age is atypical. I kept googling all the terms on the findings and I keep getting scary results.
Thank you all
I have a question. Its about MRI reading.
I just had an MRI done two weeks ago. It was open MRI without contrast. When my GP got the result he told me he doesn't think that it's big deal. He was not agreeing with radiologist. But I insist to see a neurologist.so I saw one last week. He was an old guy puffed up with his 40 years of experience in the field. He checked on my reflexes then made me walk back and forth and told me no he also don't think that I have MS. Beacuse the images and symptoms should match.
He also told me that he'll take a look on my MRI and call me. After a day he called me to tell me to do another MRI with contrast this time. But still he told me people with headache can have white spots.
Here is my MRI result.
Findings:
Normal Configuration of the intracranial compartment and posterior fossa. There is no hydrocephalus, intracranial mass, hemorrhage, diffusion restriction or significant abnormality demonstrated extracranially. Several nonspecific punctuate FLAIR in distribution. In pationet of this age, these are atypical, and could be
inflammatory-infections, demyelinating, chronic migraine, vascular, and not completely excluding Vasculitis. Intracranial dominant flow-voids are identified in usual fashion.
Impression: Tiny scattered frontoparieatal FLAIR hyperintensities are distributed largely peripheral. In a pationet of this age, with this MRI appearance, it could be due to variety of etiologies. Further work up is therefore recommended clinically. Further work up is therefore recommended clinically. Further radiographic work up may include MRI using Gadavist, cervical MRI if indicate, and follow up MRI for stability advised The thing is that I had headache but I don't remember I had migraines.
So how and why i got third spots I don't understand and how they can be normal.
If they are nonspecific then why he asked for second MRI? I am 37 years old and based on my age both my dr and the nerou dismissed other possibilities that radiyologyst suggested.
My dr ran many tests for inflammation and ANA test. ESR, C-receptive and many others all came back negative.
But the MRI result got me anxious and worried specially in the part saying for my age is atypical. I kept googling all the terms on the findings and I keep getting scary results.
Thank you all
Re: MRI Images linked - looking for knowledgeable opinions.
Lesions come and go even for people who are completely asymptomatic.Kate2 wrote:But the MRI result got me anxious and worried specially in the part saying for my age is atypical. I kept googling all the terms on the findings and I keep getting scary results.
What are your symptoms? What other tests have you had?
Re: MRI Images linked - looking for knowledgeable opinions.
everything begins from last year in the classroom.
I was in the classroom with my sister. We had a same class together.
However, while I was listening to the teacher I kind of got bord and began playing with my hair.
I had a long hair that kept tangling. So I found a tangle and tried to open it. While trying to opening the tangle I accidentally pull few hair from the root. It may sound weird or bizzare to you but belive me it happened to me. The moment that those hair was pull out right away I felt warming, thingeling sensation going down from my head to my trunk then to my knees.
Again I could see, hear the teacher but I felt that was pasin gout or dying. I thought the sensation would go away but the moment that it reached my knees.
Again I cried out to my sister and tried to snap out of it.
So the moment that I tried to get up from my sit the feeling stopped on my knees. I think if I would sit and not to do anything it would cover up all my body.
Anyhow, I was freaked out and tried to get up form my chair. Which I did and I walked out out from the classroom I hit the door open.
And my sister running after me. She hold me and I was fine but panicked. So she took me to the Univercity health center. And I was checked up by the doctor over there. Thanks god I was ok like nothing ever happened to me. Again none of the doctors could tell me what was wrong with me. The next day I was in my dr office and he told me it might of been Vesl Vegal episode. After that day I went and I cut my hair short. Beacuse I was terrified to comb my hair and pull out some hair out.
I keep going to doctors paying co pays doing blood works. But getting no where. And if I push them to much then I am either crazy or worrying to much.
then the second episode was from March 21 of this year.
But the pain problems began from years ago I mean my left side pain. That always was triggered by anxiety and stress. At fist it begans from the left back shoulder. Then the pain would redieate to my neck then back of my head then my left eye, left upper side of my head, then upper left side of my jaw and teet, then inner side of my left ear, then in left are and goes down to my left leg. There is the painful spot or point on the back of my left shoulder that I have to message it constantly. Then the pain gets releve for a bet. I went to many doctors for all the symptomps that I had but none could help me. It's been years I think 8 years now. And The neck pain is kind of always special when I have to bend my neck and concentrate on drawing, cooking or anything else I get a neck pain specially my neck gets numb. I can not breath I have to lie in my back and I have to message my back. And neck to get some relieve. When I touch my neck i feel it's numbness. Then my head hurts so bad. On May I had a wierd incident that no dr could give me a reason for it.
the third incident happend in the May 16th of this year.
I woke up In that moring feeling ok. I was on my left side. I checked on my phone and then I turned my face facing the culling the moment I turned my face I felt and heard something burst in my face. It was like boom. I got so surprised that I blinked with both of my eyes.
Then I tried to sit up but I got in a slow motion mood.
I could see, hear and even talk only my head felt wired. It was like third action movies. I thought I was dying so I cried out to my sister and she ran to the room. But I was ok. It last for few seconds.
and that was it. But that feeling left me anxious to this day. I ran to my dr that same day I tried to explain what happened to me but he checked on my vital and nerologycal signs and he said you might had a vertigo. Beacuse everything looks good.
But I pushed him for MRI and he finally agreed.
All other of my blood tests came normal just my MRI was abnormal.
But both the nerolgyist and my dr balam everything on my anxiety.
It's like I am making up the story.
But believe me since that day I can not sleep well. Beacuse anytime I want to turn left or right I wake up try to sit slowly and trun left and right.
My neck pain mostly comes from being anxious and being over worked.
For example if I keep washing the dishes for more tha 10 minutes I have to lie down. And if I get bad news or get scared my neck and back begin hurting. Sometimes sounds and lights bothers me.
Sorry for the long story but I wanted you to have a image of what's going on and why I pushed for MRI.
I was in the classroom with my sister. We had a same class together.
However, while I was listening to the teacher I kind of got bord and began playing with my hair.
I had a long hair that kept tangling. So I found a tangle and tried to open it. While trying to opening the tangle I accidentally pull few hair from the root. It may sound weird or bizzare to you but belive me it happened to me. The moment that those hair was pull out right away I felt warming, thingeling sensation going down from my head to my trunk then to my knees.
Again I could see, hear the teacher but I felt that was pasin gout or dying. I thought the sensation would go away but the moment that it reached my knees.
Again I cried out to my sister and tried to snap out of it.
So the moment that I tried to get up from my sit the feeling stopped on my knees. I think if I would sit and not to do anything it would cover up all my body.
Anyhow, I was freaked out and tried to get up form my chair. Which I did and I walked out out from the classroom I hit the door open.
And my sister running after me. She hold me and I was fine but panicked. So she took me to the Univercity health center. And I was checked up by the doctor over there. Thanks god I was ok like nothing ever happened to me. Again none of the doctors could tell me what was wrong with me. The next day I was in my dr office and he told me it might of been Vesl Vegal episode. After that day I went and I cut my hair short. Beacuse I was terrified to comb my hair and pull out some hair out.
I keep going to doctors paying co pays doing blood works. But getting no where. And if I push them to much then I am either crazy or worrying to much.
then the second episode was from March 21 of this year.
But the pain problems began from years ago I mean my left side pain. That always was triggered by anxiety and stress. At fist it begans from the left back shoulder. Then the pain would redieate to my neck then back of my head then my left eye, left upper side of my head, then upper left side of my jaw and teet, then inner side of my left ear, then in left are and goes down to my left leg. There is the painful spot or point on the back of my left shoulder that I have to message it constantly. Then the pain gets releve for a bet. I went to many doctors for all the symptomps that I had but none could help me. It's been years I think 8 years now. And The neck pain is kind of always special when I have to bend my neck and concentrate on drawing, cooking or anything else I get a neck pain specially my neck gets numb. I can not breath I have to lie in my back and I have to message my back. And neck to get some relieve. When I touch my neck i feel it's numbness. Then my head hurts so bad. On May I had a wierd incident that no dr could give me a reason for it.
the third incident happend in the May 16th of this year.
I woke up In that moring feeling ok. I was on my left side. I checked on my phone and then I turned my face facing the culling the moment I turned my face I felt and heard something burst in my face. It was like boom. I got so surprised that I blinked with both of my eyes.
Then I tried to sit up but I got in a slow motion mood.
I could see, hear and even talk only my head felt wired. It was like third action movies. I thought I was dying so I cried out to my sister and she ran to the room. But I was ok. It last for few seconds.
and that was it. But that feeling left me anxious to this day. I ran to my dr that same day I tried to explain what happened to me but he checked on my vital and nerologycal signs and he said you might had a vertigo. Beacuse everything looks good.
But I pushed him for MRI and he finally agreed.
All other of my blood tests came normal just my MRI was abnormal.
But both the nerolgyist and my dr balam everything on my anxiety.
It's like I am making up the story.
But believe me since that day I can not sleep well. Beacuse anytime I want to turn left or right I wake up try to sit slowly and trun left and right.
My neck pain mostly comes from being anxious and being over worked.
For example if I keep washing the dishes for more tha 10 minutes I have to lie down. And if I get bad news or get scared my neck and back begin hurting. Sometimes sounds and lights bothers me.
Sorry for the long story but I wanted you to have a image of what's going on and why I pushed for MRI.