Second Opinion at MS Center

[Sftylady]

I am a 44 yo female who up until this past 2 years was healthy and served as a volunteer firefighter.  I would have occasional muscle twitches and spasms, but usually wrote them off.

But that changed in February.  I woke up unable to see out of my right eye.  I has weakness in both my right arm and leg.  My balance was off and experienced vertigo.  At that time, the MRI with contrast showed several lesions at various spots in the brain and spinal cord.

Things slowly went back to normal, or should I say new normal.  Vision would be occasional blurred and would have double vision.  Would have muscles that would twitch uncontrollably.  If I was to overdo it, they would spasm very hard.

Six months later, it was déjà vu.  Vision problems, muscle weakness, muscle twitches and spasms, balance problems, numbness and tingling. Felt like something was wrapped around my chest, but cardiac exam was normal.  I have problems making sure that I don't drop things because I think I have a grasp on something, but I actually don't..  I have to urinate every 20 minutes to make sure that I don't have an accident.  MRI should no new lesions, but the original ones were still there..

Lumbar Punture was normal, except really high opening pressure..  Evoked potentials were normal.  All blood tests are normal.  Ruled out lymes disease, lupus, etc.  

Neurologist is trying to say symptoms were caused by migraines, even though I do not have headaches (except for the one I got when the emergency room gave me narcotics.). Then he wants to call it fibromyalgia, even though I don't have painful joints or trigger points.

Been doing OT/PT to work on balance, maintaining a good grip, working on learning how far I can push the new circumstances that my body is throwing at me.  Trying to regain the strength in my lower extremities.

Neurologist suggested second opinion at our states MS center.  Can you have MS with normal spinal tap and normal evoked potentials? Should I make the appointment or stop wasting my time?  I just need to make sure what is causing my body to go hay wire.  I know I am not crazy!  But I don't think that this is a migraine or fibromyalgia.

Help please.  Has been a rough emotional year!  I just want to find out so I can go back to firefighting!

[HVAC]

I would get another opinion. Something is going on you know your body. There are over 30 diseases which mimic MS so it might not be MS. It took me over two years and a half dozen Neurologists to figure out what was wrong with me.

Alex

[kwarendorf]

I agree with those who say go get another opinion. As JJ mentioned all of the testing done in conjunction with an MS DX is used to support clinical findings. There is no smoking gun test for MS. The supporting tests are chosen at the doctor's discretion, and you don't need all of them. For example I have never had evoked potential tests of any kind.

Given that MS is largely a clinical diagnosis, I would go see an MS specialist as soon as possible.

Kyle

[supermum_ms]

Hi and welcome,

I don't think it would instill much confidence, if your neuro is basically throwing a dart at a diagnosis chart and seeing what he can squeeze your sx's into and when you don't easily fit, he pulls out old faithful......anxiety.  

Q: Can you have MS with normal spinal tap? - Yes, a positive LP is suppose to be used as supportive evidence adding weight towards MS but a negative or normal LP isn't suppose to be used as proof to rule out MS, because its not a definitive test.  

Q: Can you have MS with normal evoked potentials? - Yes, again its not a definitive MS test. According to the national MS society...

"Three types of evoked potential testing have been used in the past to help confirm a diagnosis of MS:

Visual Evoked Potentials (VEP): The patient sits before a screen on which an alternating checkerboard pattern is displayed.

Brainstem Auditory Evoked Potentials (BAEP): The patient hears a series of clicks in each ear.

Sensory Evoked Potentials (SEP): Short electrical impulses are administered to an arm or leg.

The current diagnostic criteria for MS consider only VEP findings because this particular EP study has been shown to be the most useful. The VEP is used to identify impaired transmission along the optic nerve pathways, which is a fairly common early finding in MS, even in someone who has never been aware of any visual symptoms. The results of VEP testing are interpreted by a neurologist or neurophysiologist with specialized training in the use of these tests.

Despite the fact that VEPs are used to help make a diagnosis of MS, other conditions can also produce abnormal results, so this test is not specific for MS."
http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/diagnosing-ms/evoked-potentials/index.aspx

I honestly think you should seek a second opinion with a neuro who specialises in MS, your first MRI found both spinal cord and brain lesions, and your sx's are associated with MS. MS makes a heck of a lot more sense, than fribro, migraine, or anxiety because none of them cause spinal cord lesions were as MS sure does, so its in your best interest to get that second opinion.

Let us know how you get on!

Cheers.........JJ

[Jw534]

Hi sftylady I am also a firefighter/EMT. Your experience sounds similar to mine. I've been out of work for 2 months. I'm new to all this and in limbo as to what is going on. I say definitely see a ms specialist! I am hoping to in the near future. Good luck to you. Hope you get back to work soon!

[Sftylady]

Thank you!  My neurologist is trying to label me with migraines, when I don't have headaches.  He says fibromyalgia, when I am not having joint pain and no tender points.  He even tried to call it anxiety, but I have never been anxious about anything.  It helps me to know that there is someone else who had negative results and maybe I can get some resolve or answers to what is going on.  Brings peace to me.  I will try to set up the appointment in the morning.

[Jude3677]

Dear one,

I also have normal spinal tap (no O-bands) and normal EP. I do have specific lesions in brain and spine and I received the MS dx in February 2013. My diagnosis fulfilled the MRI criteria and the medical history, there were no major neurological signs.

So, my personal opinion is to have a MS specialist visit.

Take care of you and keep on sharing with us your experience.