2 Neuros and an MS expert say it's MS test disagree

[Get2ndopinion]

Hello, I've had 2 MRIs done that show 2 small lesions. I'm told they are not in the "typical" spots for MS, but curious none the less. My first LP came back negative for MS signs. But the big however is my other symptoms. I have vertigo, right sided weakness, imbalance, slurred speach, head aches, among other things which the MS specialist said were indicative of rapidly progressing MS. The specialist told me if he had to put a diagnosis on me that day it would be primary progressive MS. But he needs the tests to back him up to start any treatment. And of course every member of my family and all my friends are saying get a second opinion! You don't have MS! I've had 2 neurologists, an MS specialist, and even a neurosurgeon tell me to follow the specialist's directions. I'm so frustrated and tired of feeling dizzy, stumbling into walls, and feeling sick. Could this really be something else? Or am I just stuck in limbo until the "smoking gun" appears so treatment can start? Please, and answers are appreciated. Thank you.

[supermum_ms]

Hi and welcome to our little MS community,

Yes......it can definitely be something other than MS, 'symptoms' can be caused by many different conditions and not necessarily from a neurological condition. Without any more information that is MS suggestive/consistent symptom specific details....

Basic examples:
Speech - dx with dysarthria (slurring), dysphonia (breathy, vocal tremor, hoarse, Jerky) etc,
Vertigo - dx with cerebellar/spinal cord lesions etc,
Imbalance - dx with ataxia (swaying and drunken type of gait) etc,
Right sided weakness - dx with unilateral sensory and or reflex abnormalities etc

.....the actual symptoms you've mention are not 'on there own' particularly suggestive of a neurological condition like MS, as they honestly could be caused by something else eg Migraine, viral, diabetes, Lupus, vitamin B12 deficiency, Lyme etc etc

'Symptoms' are not necessarily suggestive/consistent with a neurological condition like MS, which is one of the main reasons your 'abnormal neurological clinical signs' and your brain and spinal MRI evidence, LP's, VEP's etc etc are all very important diagnostically.

I don't actually understand why an MS specialising neurologist, would tell you these specific 'symptoms' a) "were indicative of rapidly progressing MS" or b) "if he had to put a diagnosis on me that day it would be primary progressive MS" which is contradictory as they are practically exact opposites.....

There has to be something significant that you haven't mentioned to us from your diagnostic history for either type to even be brought up!

PPMS is the rarest of the 4 main types of MS (approx 10%) but PPMS is a very slow developing course of MS, with symptoms slowly worsening over many years, it can often takes decades of gradual accumulations before anyone recognises some things neurologically wrong. PPMSers haven't ever experienced relapse remitting signs or become secondary progressive after initially being RRMS and usually not PPMSers are not diagnosed until they are in their 40-50's.

"The criteria for a diagnosis of PPMS are:

One year of disease progression (worsening of neurological function without remission), AND

Two of the following:

-A type of lesion in the brain that is recognized by experts in as being typical of MS
-Two or more lesions of a similar type in the spinal cord
-Evidence in the spinal fluid of oligoclonal band or an elevated IgG index, both of which are indicative of immune system activity in the central nervous system"
http://www.nationalmssociety.org/What-is-MS/Types-of-MS/Primary-progressive-MS/Diagnosing-Primary-Progressive-MS

Marburg's variant or also called Fulminant MS which is the only type i'm aware of that is 'rapidly progressive' but it's exceedingly rare. It's a type of MS characterized by frequent, severe relapses with a rapid increase in disability  and is associated with large inflammatory lesions on MRI that look like tumours.
  
You don't mention the location of the lesions but if they enhanced with contract they'd still be MS relevant........neurologically abnormal clinical signs, consistent LP evidence, abnormal VEP, 2+ brain and or spinal cord lesions in 2 out of the 4 MS specifically identified locations, without any other diagnosis that could also account for the diagnostic evidence......would put MS at the top of the list of 'likely' causes in someone in the 20-50 age group.

I'm not sure what evidence you actually have that would be putting MS at the top of your list by 3 neurologists and a neurosurgeon, something definitely would have to be but additionally to that if you have all those medical opinions saying it's MS, what makes you say your still in limbo?

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

[kwarendorf]

Hi GSO - Welcome to the group.

As ALex mentioned, there is no smoking gun test for MS. It is first and foremost a clinical diagnosis. You MS specialist has told you something no one wants to hear. I would get a second opinion.

PPMS is the rarest form of MS. To make that diagnosis on the basis of 2 small lesions seems pretty agressive. Before accepting your diagnosis, and with the understanding that there are no treatment options available for PPMS, I would want it confirmed.

Kyle

[aspen2]

I'm in the same boat.  How long have you been in limbo?  For me it's coming up to three years.  Also lesions, clinical, relapses (in my case).  Ms neurologist backpedalled to not ms when LP came back negative.

Is your right side your dominant side?  Mine is, and I wish neurologists would understand that this weakness really interferes with normal life :(.  Mine used to relapse but no more.  Other things still do.

My understanding is between 5-10% of those with ms can have negative LPs.  The NMSS site even mentions that some with ms will never have bands.

So I understand your frustration completely.

On the other hand, there are some really rare mimics I've seen, especially when symptoms aren't relapsing.  Things that aren't screened for in that initial wave of "rule everything out" bloodwork.

Sorry I'm no real help; continue to push for answers.

[armillariasolidipes]

Hi Get2ndopinion! There are various things that can mimic the symptoms of MS, so it's important that before your specialist start saying what his hunch is, that he actually back it up with results. Which other tests does the specialist think he needs to do in order to show conclusively that you have MS?

In the mean time, I highly recommend two things:
1. Doing as much self-care as you can. When I was waiting to be diagnosed (ended up being RRMS), I ended up having the worst exacerbation of my life as a result of the stress I was under. Try napping, going into nature, spending time with loved ones, speaking with a therapist--whatever it is that helps you to cope with stress.
2. Remove anything from your diet or your environment that can stress out your immune system. Get an allergy panel done if you haven't already. Get some help from your friends and clean out any dust, mildew, or mold in your home. Eat healthy, whole foods.

Much luck and strength to you! I hope you can find out soon whatever it is that is causing you these problems.

[HVAC]

I do not know how long you have been going through the diagnosis process. No test rules MS in or out. That said insurance companies want strong proof. It usually takes a couple of years of being followed by a neurologist to get a MS diagnosis. I was told for two years that I would be diagnosed with MS in the future. I was very confused. I said if you say I will have MS doesn't that mean I have it? No doctor would diagnose it even all the tests and symptoms pointed to MS. They have to rule out and other possibilities. You can always get a second opinion. The only problem with that is most doctors want to start at square one. I had to change neurologists because one moved and the second one fired me for asking questions (she did me a favor, she was an idiot). I had to start at the begining each time which meant it took two years for a diagnosis. If it is PPMS that can also take longer for a diagnosis since they usually want to diagnose you first and then follow you for at least a year to decide if it is PPMS. PPMS does not act like RRMS. You do not have attacks so it is harder to diagnose. Since I never had what they call an attack it took me years to be diagnosed. I had the abnormal MRIS, LP and everything else. I had neurological symptoms documented since 1965. I just never had attacks. All my symptoms stayed. They just gradually got worse. My symptoms changed so gradually I just thought they were normal. They were normal for me. If it is PPMS it will not hurt to be diagnosed slower. With RRMS you want to be diagnosed andf put on a disease modifying drug as quickly as possible. It does not make a difference with PPMS. The drugs do not work as well on PPMS. It is still worth it to be on them. Research just says they do not respond as well as RRMS.

Alex