"Possible MS"... Advice

[arob2013]

Hi friends, I have posted a few boards before but I had a follow up with my neuro yesterday, and REALLY need some guidance...

Some history, been seeing a neuro for three weeks, originally for back pain and vision problems. A week after seeing the neuro I woke up one morning with no feeling in BOTH arms down through hands. Went to ER and had a MRI done to rule out MS. MRI came back with a "few" lesions. Admitted for observation, blood draw, and a spinal tap. Discharged two days later after tests and told to follow up with neuro in two weeks.

Went to neuro yesterday and he had not even looked over my blood/csf results or MRI yet :/. We did this in the office together, quite rushed. The spinal tap was "negative" (no information further) as well as all the other bloods tests for Lyme, etc. I asked him point blank if he felt it was MS and he said no because I didn't meet the criteria. I asked him about the MRI intensity and apparently the wrong MRI was done in the hospital at a 1.5T vs 3T. After the is was mentioned he suggested me seeing an MS specialist, explaining he only has a few MS patients. I weft very well prepared for the appointment and educated about the scenarios ,whereas he did not. He arranged for many additional tests to rule out carpal tunnel, equilibrium disorders, nerve tests, and suggested I see a ophthalmologist (I just saw one in November, which I told him...), as well as a second opinion from the MS specialist. He explained that he was doing these tests to rule out all of my symptoms. I should also mention I failed the poking portion of the neuro exam (no sensitivity in hands and arms, as well as calves and lower legs), the weakness portion, and I had some trouble with the memory portion but recovered later in the exam.

My current abnormal symptoms are:
-Back and neck pain/stiffness
-Blurry vision/grey spot in left eye/tired left eye
-bilateral arm weakness
-bilateral hand numbness, deceased sensitivity, and vibration (all more on the right side
-frequent dizziness/disorientation/loss of balance (this can sometimes cause nausea when withs moderate, at its highest intensity I cannot stand)
-exhaustion. All the time.
-my speech is seemingly impaired as I have been slurring speech, forgetful, stuttering, however this has all caused me a lot of stress so I don't know if I a nan blame my speech solely on an abnormal symptoms or fatigue

My MRI on the 1.5T with and without contrast showed three peri ventricular lesions, one in the frontal lobe about 2mm and two in the back (forgot that lobe name..) about 2mm and the other about the size of a quarter. There are no advancing lesions shown from this MRI. I had a neuro radiologist look over the MRI and he said he saw some "optical Retrobular inflammation" and suggested a stronger MRI was needed to confirm this.


Sorry for the long explanation, but please understand I am otherwise a healthy, captive, 25 year old female, and this has significantly decreased my quality of life. I just finished a half marathon in November, was working out 5x a week, eat very healthy as I was diagnosed with Gastroparesis 2 years ago and follow a strict low fat diet.

-I am curious as to whether my pursuit of an MS diagnoses is warranted, as well as if I should see the specialist for a second opinion.
-Is it probable that my MRI would be different enough to change my original neuros opinion had I had a stronger MRI?
-Should I respect the negative CSF findings?
-Are there any other possible explanations for my symptoms, that all seemed to begin at one time?
-At what point do you stop feeling crazy?...

I left my apt yesterday was no clear direction and some Gabapention for? Pain? My husband practically begged for something in between all these tests and referrals to get me feeling kinda human again.

Thanks in advance for reading, and for all suggestions and advice. I just ready to get on the right track, whatever that may be...

[aj1964]

i have had MS for years, never optic neuritis always lower part of body, balance,FATIGUE,some cognitive issues and L'Hermitage syndrome, but I would go for second opinion it would be wonderful if it was not MS but something they could treat or get rid of

[arob2013]

I see one of the top MS specialists in my area April 10th. (we had multiple people call to pull string to get me in "so quickly"!) I am going to stick to seeing her vs. someone quicker, because she has phenomenal reviews and was my neuros #1 suggestion (not to mention her waitlist is 4+ months long...)

I got a call from the home health nurse and they are actually coming TONIGHT and treating through the weekend, se said the same thing in that I could have symptoms relief as soon as by the end of treatment, as well as some energy!! Best news I've heard in a while...

Since you have been so helpful, can I ask you one more set of questions? I have (for about a year), had these flare ups periodically where it feels like I cannot catch my breath/someone is sitting on my chest. It always makes my vision blurry and spotty, and makes me feel very light headed. I have mentioned it to drs before, but it's been brushed off at medical anxiety (i have gastroparesis that flares up regularly with it..) Today I noticed, when I was outside in the sun for for 30 mins, and for the first time in a while, that the "medical anxiety" feeling came on VERY strong, left me very short of breath, and weak. It lasted a whopping 30 minutes before I felt kind of normal again.

I have read somewhere about heat intolerance with MS, and I haven't noticed this so much before (besides the "normal"? dizzy feelings when I get out of a hot bath), as well as something called an MS hug. I am curious as to what these symptoms may feel like? It almost makes sense to say that my medical anxiety feels very much like a constricting hug, however.... it could just be anxiety (it's be a heck of a week!)  

Probably nothing, but just curious :).

[kwarendorf]

Well it sounds like the neuro is joining the opthamologist on the MS bandwagon : - )If I understand, the neuro asked if you had an appointment with Specialist # 1 yet and if not she was going to hook you up with # 2. This shows a degree of confidence on her part that you are dealing with MS.

ON is one of many symptoms of MS. It results when the demyelination takes place on the optic nerve, which is part of the central nervous system. It's the same as demyelination in any other place in the central nervous system.

The demyelination causes inflammation. It is the inflammation that the steroids relieve. Steroids do not treat the underlying cause of the inflammation.

It's good that you are getting the steroids. As I mentioned, there is no reason to continue to suffer while the final dx is pursued. I did not have ON, but I did have 5 days of IV steroids, also at home. The home part makes life much easier. I saw almost immediate signs of relief. I had no ill effects from the steroids and continued to go to work etc.

When are you seeing the specialist?

Kyle

[arob2013]

Thanks again for the response. I was feeling a little stressed when I wrote it.

My regular neuro just called back after receiving the opthamologist report and said they are starting my on 3 days of IV steroids in home, as this was their "Ms protocol." They wouldn't elaborate further, but asked if I had an appointment yet for  the specialist, and if not they needed to refer me to another to be seen.

It seems that's the deal with this process, constant ups and downs. Hoping we are maybe getting somewhere at this time!

Are you familiar with the ON IV treatment?

[kwarendorf]

Hi -

If you have lesions and symptoms (PN is a symptom) it sounds like Clinically Isolated Syndrome (CIS) at the very least. CIS is often a name they give to a first MS attack. If you do not have a second attack then it remains CIS. If you do have a subsequent attack it becomes MS. The second attack needs to be at least 30 days from the first. This satisfies the separation in time component of the McDonald criteria.

Was the neuro's office you just dealt with the MS specialist? Did the ophthalmologist start you on steroids to deal with the ON inflammation?

[arob2013]

:(...


I'm feeling a little lost right now.

My neuros office just called and said the VEP and BAER came back within normal limits. I was under the impression ON would should up on the VEP?

I am getting pretty bummed with the flip flopping in dr opinions, and my neuro is driving me crazy.

I'm starting to feel like maybe MS isn't the diagnoses, as the only thing they have found is a few lesions on my brain MRI and clinical ON... Everything else is coming back within normal limits...

Where am I at this point, in your opinions...

[kwarendorf]

It is up to individual docs to determine when 1+ 1 = MS. From what you describe it certainly sounds like a contender. Each doc will have their own criteria. I was diagnosed based on clinical exam, MRI's and LP. I did not have an EMG, VEP or any other nerve conduction tests.

THere is no reason for waiting to treat the ON. It can, and should be treated as soon as possible. I was started on IVSM before my diagnosis was official. Relief of current inflammation should not have any impact on the diagnostic process.

As to the McDOnald criteria, it does not get into symptom specifics. Your ON symptoms would be "an attack" in the clinical presentation column. More than one appearance, with more than 30 days in between, would be 2 attacks. Etc...

Kyle

[arob2013]

Thanks so much for the responses,

What should I expect from my follow up with my neuro. I won't be seeing a specialist for about 3 weeks, but the opthamologist said I should begin ON treatment now.

I had a nerve conduction study & EMG which came back normal (the neuro that did it said my PNS looked perfect..), and I had a VEP and BAER yesterday.

My neuro has openly expressed he's not well versed in MS, so for my own minds sake, is Optic Neuritis, 3 peri ventricular lesions, clinical attack of bilateral numbness & upper body tremors (lasting not 3 weeks...), and a possible abnormal VEP/BAER enough to clinch a diagnoses? I can't find anywhere in Mcdonals criteria where they include the optic nerves, however I have read in many med. journals that the optic nerves should be viewed as part of the CNS?

Thanks :) just trying to best understand this difficult process/diagnoses!

[supermum_ms]

Your only 'definite' dx would be Optic Neuritis and ON is more suggestive of MS than your MRI is but having ON on it's own it would not usually be enough to dx you with MS, because ON is a stand alone dx too, though it should add more weight towards MS and keep MS higher on your list of possible causation. (hope that made sense)

ON is a common first sx of MS, this is a good article to read regarding Optic Neuritis and the risk of developing MS in the future.....

http://www.ccjm.org/content/76/3/181.full

Hugs.................JJ

[kwarendorf]

Hi arob -

It sounds like you are making progress. You seem to have a definite diagnosis of Optic Neuritis. MS is not the only cause of optic neuritis, but it sure is a common first symptom. The steroid treatment, for many 3-5 days of IV steroids will reduce the inflammation. It will not address the cause of the inflammation.

Once the inflammation is under control working with your neurologist should move you towards a diagnosis.

Keep us posted.

Kyle

[arob2013]

Just an update.

Had an appointment with an Opthamologist today who specializes in potential MS cases. I was found to have a pretty bad case of Optic Neuritis. He said this was classic in MS, and he wanted me to begin ON steroid treatments immediately, because my inflammation was pretty severe. He explained he was going to contact my Neurologist and suggest steroid treatment for demylenating disease.

At this point, should I assume this is a definitive diagnoses? It's been hard to understand being juggled between drs, what page they are all on. If this the evidence my neuro needed?

[kwarendorf]

Hi arob - Welcome to out little chat fest!

I agree with Penina. It is nice to talk about "usually" and "normally", but we know that these are qualified by actual experiences. People with MS can and do present with bilateral symptoms. My first relapse was characterized by bilateral numbness in my feet.  

I would not be overly concerned with the strength of the MRI. Many, if not most, of us have been diagnosed with 1.5T images. Your Negative LP likely means that there were no oligoclonal bands found that were unique to your CSF. There is no reason to question the finding, unless you have reason not to trust the lab. As with all tests, including MRI, get a copy of the report.

I would absolutely see the MS specialist. You have many things going on and MS is a possible cause for some of them. I would caution against pursuing any specific diagnosis. Find doctors that you can trust and let the chips fall where they may.

Keep us posted.

Kyle

[HVAC]

Certain medications can make neurological symptoms worse at first. That was one way they knew my issues were Neurological.


Alex

[PeninaD]

I really hate seeing "bilateral is not MS".  
Well yes, it very well can be, if there is one lesion wrapping around the sides of the spinal cord, or a coincidence of two similar lesions on either side of any portion of the central nervous system (brain or cord.)

[doublevision1]

Bilateral presentation may not be as common but it does occur. When I was dx'ed, both hands were numb and tingly. Over time and subsequent relapses, it's now much worse on my left side but still mildly present on my right. My second big relapse involved both feet going numbish and felt like I was walking on marbles and shards of glass....both feet equally affected. That remitted but when I'm really tired both feet start feeling really strange again.

[arob2013]

Alex,

Thank you for the response. I thought the bilateral symptoms were uncharacteristic as well... I have read that in early MS, presentation can be bilateral, however I am uncertain of this validity. I feel like a lot of my numbness is mainly right sided (at least that's where it begins..), but in the neuro exam I failed strength in my left, as well as my eye problems seem to be all left sided.

I just started the medicine last night and woke up today with obnoxiously more severe symptoms (ie, right hand pain, hand vibration, majorrrrr balance problems and foggy head feeling...) I'm sure it takes a while for the meds to kick in.

3 years of waiting sounds unbearable. Any suggestions for limbo?

[HVAC]

I would see a MS specialist. He said he was not that versed in MS. The bilateral symptoms are weird for MS. Most Neurologists even MS specialist do not diagnose quickly they follow you over time. Usually every six months. All my tests and symptoms were classic for MS but it took years before the Neurologist would diagnose me. I went to several because my first one left town, then the next Neurologist fired me when I brought up MS. The third guy thought it was MS but followed me over a year before diagnosing MS.

At least they gave you something for pain that is good. For me they waited 3 years until I was diagnosed to treat symptoms.


Alex