Is this MS.

[idiocracy]

I have severe tingling throughout my legs and twitching in my calves after I do an intense 1 hr spin class or ride my rode bike.  The twitching makes it hard for me to sleep.  The tingling isn't very intense, but definitely noticeable.  I also occasionally get this in both my arms.  I post this in the MS forum because I just came back from my neurology appointment and the Dr. said my Brain MRI was abnormal with lesions found.  I look at the MRI and can only see a few white spots on maybe 2-3 of the images.  Could I have MS?  The Dr. has ordered a spinal tap.

[idiocracy]

Hi,

I just received my spinal tap results.  All the tests were normal, except my total CSF Protein number was 45.1 with a normal on this test being 0.0 - 44.0.  I have not spoken to the neurologist about the results.  I have researched this on the internet and it sounds like most neuros would blow this off as non significant.  Anyone have experience with this?  Could this point towards MS?

[idiocracy]

I just received my spinal tap results.  All the tests were normal, except my total CSF Protein number was 45.1 with a normal on this test being 0.0 - 44.0.  I have not spoken to the neurologist about the results.  I have researched this on the internet and it sounds like most neuros would blow this off as non significant.  Anyone have experience with this?  Could this point towards MS?

[Joiedecour]

let us know how your spinal tap results turn out. I have the same issue with tingling after exercise, but legwise it's unilateral, and otherwise a patch in my back below shoulder blade, and l'hermittes when I bend head forward. I have been in limbo for three years with a neuro following and treating sx. Your spinal may keep you without answers if it's negative, and I don't wish positive for you.

[idiocracy]

Hi, I don't know about evaluated for Lyme's disease, but I have been blood tested recently for Lyme's and it was negative.  I am having a spinal tap tomorrow afternoon regarding MS, etc.

[jensequitur]

All right, so there's lesion activity, but it's not a classic distribution for MS. This could mean many things, including MS. Have you been evaluated for Lyme disease?

[idiocracy]

I was able to get the actual brain MRI interpretation.  Here is what it states: The ventricles, cistern, and sulci are symmetric and age appropriate.  As best appreciate on the FLAIR sequence there are numerous foci of increased T2 signal in the white matter more peripheral and subcoritical than periventricular.  This may represent small vessel disease.  The patter is more prominent than typically seen in this age group.  Given the pt's young age demyelinating process should be considered, although the patter is not classic for MS.  Dominent lesion or significant mass effect is not seen.  There is no restricted diffusion to suggest acute ischemic event.  No abnormal enhancement is identified in any area.  
IMPRESSION: Nonspecific white matter lesions, numerous for age.  Consider small vessel disease and demyelinating process.

[idiocracy]

I was able to get the actual brain MRI interpretation.  Here is what it states: The ventricles, cistern, and sulci are symmetric and age appropriate.  As best appreciate on the FLAIR sequence there are numerous foci of increased T2 signal in the white matter more peripheral and subcoritical than periventricular.  This may represent small vessel disease.  The patter is more prominent than typically seen in this age group.  Given the pt's young age demyelinating process should be considered, although the patter is not classic for MS.  Dominent lesion or significant mass effect is not seen.  There is no restricted diffusion to suggest acute ischemic event.  No abnormal enhancement is identified in any area.  
IMPRESSION: Nonspecific white matter lesions, numerous for age.  Consider small vessel disease and demyelinating process.

[HVAC]

It probably is not in your head. There are many possibilities the doctors have to sort out.

Alex

[idiocracy]

Hi Super Mum,

I was able to get the actual brain MRI interpretation.  Here is what it states: The ventricles, cistern, and sulci are symmetric and age appropriate.  As best appreciate on the FLAIR sequence there are numerous foci of increased T2 signal in the white matter more peripheral and subcoritical than periventricular.  This may represent small vessel disease.  The patter is more prominent than typically seen in this age group.  Given the pt's young age demyelinating process should be considered, although the patter is not classic for MS.  Dominent lesion or significant mass effect is not seen.  There is no restricted diffusion to suggest acute ischemic event.  No abnormal enhancement is identified in any area.  
IMPRESSION: Nonspecific white matter lesions, numerous for age.  Consider small vessel disease and demyelinating process.

[idiocracy]

Hi Alex,

Thank you for your reply.  Wow you are a strong person!  Your trip to Europe sounds like it was a lot of fun.  I hope to get back there one day and enjoy an English Premier League soccer match.  Hopefully I can get through this, but you have provided some inspiration!

Today my legs felt great, but it seems to shift up into my shoulders and arms.  I have had twitching in my left back just below my shoulder for most of the day.  Maybe this is from some after spin push ups we did last night.  I have extreme tightness in my mid upper back that radiates down both arms and my arms shake if I pick something up.  Maybe this too is from the push ups and the lack of use of my arms over the last few months.

I'm very confused about what is going on.  Is this all in my head?  Anyhow, I have a followup appointment with an infectious disease doctor on Tuesday.  He will go over my blood tests for things such as EBV, Hep, Cytolomeg Virus, autoimmune stuff, etc.  I will then have my spinal tap on Friday.  I am also thinking about seeking a second opinion from a neuro my parents see back in CA once I have all my tests.

That's crazy about your nose.  I'm glad that all worked out without having to go through surgery.

[HVAC]

Sounds like you have a good doctor. You will just have to have tests and wait for the results. Sounds like you have over all good health if you are doing spin classes. MS is different for everyone. I feared I would be in a wheel chair because that is all I knew of MS. I have had MS a very long time and am very mobile. I just spent three weeks traveling through Europe. I did a lot of climbing. Sometimes 300 steps up to a castle. I do use arm crutches when I am tired. It did not slow me down. The crutches are like having four legs instead of two. I try to exercise. When I was diagnosed I asked myself what could I do. I decided staying healthy. I got hit with MS and then stage 4 ovarian cancer. The cancer diagnosis was 3 years ago. I live my life as best as I can.

The biggest part of MS is fear of the unknown. I have learned to stay away from the fear. I say to myself what is so scary at this moment. Sunday I broke my nose. On the way to the hospital I stayed away from thinking about having my nose set which is painful. It turned out my husband had put it back when I was on the side walk so I had nothing to worry about. The doctor just examined it and said it was in place. I can freak myself out with the unknowns.

Alex

[idiocracy]

The neurologist was very vague simply saying he didn't see much and we could redo the MRI in 6 months if I wanted to.  I think it might be time to find a new neuro.  He is having me get a spinal tap to see if there is anything there.  I think this all might just be from being dehydrated and anxiety.  This acyclovir can be nasty.

I appreciate your responses.  

Thank you.

[supermum_ms]

I did but it didn't really provide anything additional...

"MRI abnormal multiple lesions" would be very unusual wording to be written in an MRI report, it definitely sounds more like it could of been the PA or even your interpretation but with nothing else to go on, i'd be relying on your neurologists interpretation of your MRI and not on anything that was said by the PA.

IF i am understanding correctly, whilst your wording makes it appear to be a disagreement between the use of 'multiple vs few'......I think you 'could be'  meaning your neurologist doesn't agree with any of what the PA (physicians assistant) told you about your MRI and he's telling you your MRI is not actually abnormal.

Keep in mind a few non specific lesions in common locations wouldn't usually be classified as an abnormal MRI, and realistically there only needs to be 1 demyelinating lesion for an MRI to be abnormal.......it all comes back to lesion location etc, and if you don't have any abnormal clinical signs or any suggestive/consistent neurologically abnormal test results, it is quite likely your MRI is normal and what your dealing with is something other than a neurological condition like MS.

Cheers..........JJ

[idiocracy]

Hi Supermum_ms,

Did you have a chance to look at the additional information I have posted?

[supermum_ms]

oops cross posting lol you posted whilst i was writing my reply... i'll have a read and get back to you on any altered thoughts :D

[supermum_ms]

Hi and welcome,

Honestly, it's hard to have an opinion on whether you could have MS or not with the information provided........the symptoms you've described experiencing are basically situation specific ie whilst on a bike, which isn't actually unusual with cycling, so I wouldn't of expected a neurological condition like MS to be at the top of your list of possible causes.

I'm not impressed with your neuro if he only just told you your "Brain MRI was abnormal with lesions found" and nothing else.....Technically a few brain lesions wouldn't generally be classified as abnormal, so there would have to be something standing out for your neuro to state your MRI wasn't normal.  

Sorry but for me there needs to be more information, before i could comfortably comment on if the lesion(s) 'could be' suggestive/consistent with MS or not eg lesion locations, did some light up with contrast and others not, was demyelination identified, what did the MRI report say etc etc

The other important test evidence that also needs to be suggestive/consistent with MS, is actually your neurological assessment which should of found at least some neurologically abnormal clinical signs. With the symptom situation mentioned I would expect a full spinal MRI to look for cord lesions or an alternative structural explanation eg disc issues, arthritis, nerve compresion etc, did you have a spinal MRI?  

Cheers............JJ

ps sorry but there is no simple answer to your question

[idiocracy]

I forgot to mention, they only gave me the MRI images so I could show them to the ID dr. , they did not give me the actual interpretation.  The PA read them to me before the Dr. came in as MRI abnormal multiple lesions.  The Dr. came in and threw up the MRI on the lightboard and then said he only saw a few.  I then said that the PA said the report said multiple and he disagreed.

[idiocracy]

This all started about 5 months ago when I noticed leg weakness and a tingling sensation in the left side of my head.  I then started to get pain in my legs whenever I would do spin, yoga, go to the gym or ride my bike.  I thought I was having a cold sore outbreak on my face and that this might be part of that so I went to urgent care and was given a prescription to acyclovir.  I have since taken a blood test and was positive for both HSV1 and HSV2 (1.1, which could be a false positive so I am told).  Anyhow, my symptoms would wax and wane to the point that I have every other day extreme tingling in my arms and legs with twitching in my calves.  The head tingling has subsided.  I assumed this all might have something to do with HSV1 or HSV2 so I have continued to take acyclovir as suppresive therapy.  The neuro did an EMG on my legs which was negative along with xray's of my spine which were negative.  The only thing abnormal was the brain MRI.  All other bloodwork has been normal other than high Vit B6 levels which was 64 when the normal high was 48.  The neuro thinks this is from vitamin b supplements I was taking.  I started that when I first noticed these symptoms.  I am having a followup with and ID dr. tomorrow where I will get results for EBV, Cytolomegalovirus, hepatitis, etc.  HIV was negative.  My primary thinks this is anxiety and has nothing to do with HSV.  I will say, the leg weakness is much better and I no longer get the pain in my legs after I do a spin class.  The real issue now is the tingling and the twitching like my nerves are going haywire.

[ConfirmedRachel]

Hi there,

Do you have the MRI report that you could share with us? It might help us help you a little more.

While you were at your appointment what questions and/or assessments did you do with your Neuro?

Did the Report or Neuro indicate what they might think was going on for you at all?

As I say, any more info about the report and assessments you've had so far might help fill in some of the gaps.

Thanks
Nx