Just looking for feedback

[cola1016]

Hello all,

I'm in what I think is called "limbo land?"

August 3rd I got an MRI with/without contrast done which was ordered by my PCP. I was suffering from a wide spectrum of symptoms that I was worried could be thyroid issues. My PCP insisted my thyroid was fine and when I mentioned my breasts leaking in addition to my constant headaches, he insisted on getting the MRI done. He was suspicious of pituitary adenoma.

I get the MRI done, results come back that I indeed have a microadenoma, but in addition there were lesions of concern.

High T2 and FLAIR signal intensity foci in the white matter, 2 of which occupy periventricular location, one of which (the right temporal lobe lesion) enhances on postinfusion sequences concerning for MS. Neurological consultation and additional MRI brain surveillance are recommended.

So, I see the neurologist, he tells me that my lesions aren't typical of an MS patient so he wanted to do a LP to check for obands. He stated at that appointment if I had obands that I would likely be diagnosed with MS.

Fast forward to September 2nd. I get the LP done. Results come back as follows;

Isoelectric focusing/immunofixation reveals two or more
unique bands in the CSF with no corresponding bands in the
serum. There are also identical bands present in both the
CSF and the serum. This is consistent with intrathecal
synthesis of immunoglobulin and is considered to be a
positive result for oligoclonal bands.

The other results;
IGG CSF 1.2 mg/dL
ALBUMIN CSF 9 mg/dL
IGG SERUM 1170 mg/dL

ALBUMIN SERUM 3830
ALBUMIN INDEX 2.3
IGG SYNTHESIS RATE CSF <0.0 mg/d
IGG/ALB RATIO CSF 0.13
IgG Index 0.44

So today was my followup and he tells me that although I was positive for 1 test (I assume he was talking about the obands) he can't diagnose me with MS or anything else for that matter. So I have to follow up in 3 months to get another MRI and see if there has been any progression.

Is this the typical story for most people? Of course I do not want MS, but I also don't want to be the mystery case. Tired of having symptoms on and off, feeling good for a little while and going back to feeling crappy. It's so frustrating, I just want answers :(

[supermum_ms]

Hi and welcome to our little MS community,

IF i am understanding what you've written, your primary care physician ordered your one and only brain MRI but he was looking for evidence of an unrelated condition (pituitary adenoma) and unexpectedly, you're now looking at the possibility of MS being the cause of your symptoms...

The MRI could of been just a standard brain MRI, and run without MS protocol because your PCP wasn't looking specifically for evidence of MS and it was probably done on the more common 1.5T strength MRI too. A 3T MRI, run with MS protocol, with and without contrast is usually recommended when MS is suspected.....basically a 3T will show up to 25% more than a 1.5T and MS protocol has 3mm slices instead of the standard 5mm, which all helps to show up more lesions (if there are more to find) and potentially find enough to meet the MS Mcdonald diagnostic criteria...

Your MRI still found some evidence suggestive enough to put MS high up on your potential causation list, location is very important when you haven't as yet been diagnosed. The MS Mcdonald diagnostic criteria mentions 4 specific locations (periventricular, infratentorial, juxtacortical, spinal cord) which you need lesions in at least 2 out of the 4 but it also mentions evidence of at least 2 attacks.....you've mentioned having some older established lesions and newly enhancing lesion(s), and you have 2 periventricular which is definitely one of the specified locations, but it is completely illogical to discount the right temporal lobe lesion when it enhanced with contrast which is what demyelinating lesions do!    

The LP is no longer necessary, it's very useful when there isn't enough evidence on the MRI and clinical (abnormal neurological assessments) but again it's completely illogical to discount an LP that is suggestive/consistent with MS, when 2+ unique obands is what 80-90% of MSers actually have.  

I honestly can't say if you already have enough diagnostic evidence or not, MS is diagnosed on the totality of your diagnostic evidence and whilst i understand that 3 months may seem like a long time to wait, but in general that's quick, it;s not uncommon to have 6 or 12monthly follow ups and diagnosis can unfortunately take years.

I would definitely recommend you double check on if the  neurologist your seeing is an MS specialist or just a general neuro, and if he is only a general neurologist, then it would be in your best interest to seek the opinion of a neurologist who does specialise in MS!

Hope that helps.....JJ

ps if you have any questions please feel free to ask anything and we'll do our best :D

[cola1016]

Thank you for your response! The most thoughtful one that I've ever received about this!! LOL. Unfortunately I'm on a low-income insurance plan with the state so I'm not allowed to look for my own specialists and this neuro was the one referred to me.