[Pixie Perfect]

I was in the hospital last week for a myriad of symptoms (mostly right-sided, but occasional left side involvement). An MRI on the brain revealed a plaque in my left frontal lobe in the subcortical white matter, suspected to be demyelinating. Spine MRI tested negative. My IgG levels have all cme back in the normal range, but they seemed to decline with time while I was there from a borderline high reading. They told me that it's Clinically Isolated Syndrome, but are kind of holding out to rule everything out.

Lyme disease was ruled out. B12 cellular was ruled out. Magnesium sits around 2.0. Vit D was deficient, but they drew it after I'd been sitting in a hospital bed for 5 days straight. On top of that, my symptoms were getting better as I was in the hospital (they were giving me no supplements whatsoever, IV was only saline). No signs of dehydration upon intake (I asked). My LP came back normal in every category, zero OCB. IgG CSF index was at .5 (normal is .66). LDH was normal (14). EEG and EMG negative. They did find Thornwaldt cysts in the lumbar, thoracic, cervical, and brain MRIs.

I know I'm not crazy, my reflexes were noted as irregular. Positive Babinski on right side (which they were frustrated from because they had to try a dozen times just to get a reflex), positive Hoffman's, turns negative, then turns positive, all within a minute. Reflexes of right ankle didn't work, neither did the right wrist. This just can't be in my head. A couple more tests are pending (Acetylcholine receptor, binding, Angiotensin converting enzyme, CSF, Myasthenia Gravis, NMO). I have a Visual Evoked Potential test that needs to be scheduled.

I'm just so at a loss...

[Debbie D]

Welcome to that wonderful journey of diagnosis...a long, frustrating trail...

keep a symptom journal of dates of onset and diminishment...also a list of questions for when you see your doc.

most importantly, live your life! Eat well, exercise when you can (even if it's a walk around the block), and try to find something to be grateful for each day. Many of us (me included) become obsessed with what is going on, which is understandable!! But then we miss out on what opportunities each day brings for joy.

Easy for me to say, after being dxd after several years of being told it's fibro, no it's migraines (never had one)...finally getting a dx of "benign MS" (uh, right...). I have been told by my neuro to quit counting on my fingers all of my sxs. He's right! I deal with them as they intrude upon my day; but I no longer think about it with each breath (unless I have the hug).

Just keep an eye on the sxs, but go on with your life. You will get an answer. Your MRI is a base line for later MRIs to compare and contrast whether or not there is progression on some level. Make sure you have a neuro that takes the team approach; mine tells me that loved ones as well as and his nurses are my team, supporting me, watching me, and cheering me on. I love that-he is not an autocrat, but a kind, knowledgable doctor.

Keep us up to date, and check in for info, support, hugs and some laughs. It's a great group here, and they have helped me tremendously on my journey.

[Starznight]

Sorry to hear of your myriad of symptoms, but your doctors might be as lost as you are for the moment. Trouble is, you can have MS with a negative spinal tap (only works sussing out about 80-90% of the population). And you can have lesions in the brain and spine without having MS. Unfortunately it's not one of those: if it looks like a duck and quacks like a duck... Disorders. And short of passing/failing tests with flying colors so to speak, it's not a quick dx, and realistically even if you do show signs, have positive tests, it could still take them a bit to make the call.

I hope they find answers for you soon,but I also hope you don't get to discouraged if it takes them a bit. But this is also a great site, everyone has been great to me while I was waiting for confirmation. So please don't hesitate to join in the fun and vent if you need to, we'll be here.

[Pixie Perfect]

Thanks y'all. I was in the hospital for 5 days, and it seemed like a bunch of doctors were into my case. I just don't know what to make of it all. It's like they come in and do a neurological exam and just scratch their heads and walk out. Then an MRI comes back and they're like "CIS!!!" I just don't know what to think. I wrote down 4 or 5 questions I have for my neurologist. If she doesn't call me to tell me my MS results on Monday, I'll give her a call.

[Debbie D]

I might get a doc who specializes in MS if symptoms keep pointing in that direction...CIS is being treated more promptly by MS neuros nowadays.

[Pixie Perfect]

Originally Posted by Debbie D

I might get a doc who specializes in MS if symptoms keep pointing in that direction...CIS is being treated more promptly by MS neuros nowadays.

I'd love to, but I'm on Medicaid at the moment. I was actually fired for my symptoms (not on paper, but my loss of cognitive ability and memory contributed) in March. No neurologists except the LSU / Tulane system accept Medicaid here, and I need a referral to any doctors in their system. My current doctor is a resident with a impressive background (undergrad: Berkeley, Med school Emory School of Medicine).

She does listen to my concerns and tested me for things that I have asked about. I trust her, but I agree about an MS specialist, or at least a specialist that deals with plaques on the brain. She did the LP very low (probably the L4/L5 area), and I wonder if, since it was in the subcortical area and not in the cortical or periventricular area, would any bands show up that far down when a lesion is active?

[SallyC]

Hang in there Pixie. We have all be through this,
in one way or another and are here for you...

[TheSleeper]

Originally Posted by Pixie Perfect

I'd love to, but I'm on Medicaid at the moment. I was actually fired for my symptoms (not on paper, but my loss of cognitive ability and memory contributed) in March. No neurologists except the LSU / Tulane system accept Medicaid here, and I need a referral to any doctors in their system. My current doctor is a resident with a impressive background (undergrad: Berkeley, Med school Emory School of Medicine).

She does listen to my concerns and tested me for things that I have asked about. I trust her, but I agree about an MS specialist, or at least a specialist that deals with plaques on the brain. She did the LP very low (probably the L4/L5 area), and I wonder if, since it was in the subcortical area and not in the cortical or periventricular area, would any bands show up that far down when a lesion is active?

As I understand it the L4/L5 area is the normal area for an L/P?

I also had negative results on mine, but that didn't alter the fact that I had MS, there was no better answer.

[Debbie D]

I agree with the idea that the lumbar area is the area they pull fluid out of the spinal canal-thus the term "lumbar puncture," the correct term for spinal tap.

I hope that you at least get some concrete answers sooner than later...

[Pixie Perfect]

Originally Posted by TheSleeper

As I understand it the L4/L5 area is the normal area for an L/P?

I also had negative results on mine, but that didn't alter the fact that I had MS, there was no better answer.

I know it's a dx of exclusion. And they did find a lesion "suspicious" of being demyelinating. They've ruled out everything except NMO and MG at this point. Hopefully since I was negative on the spinal tap, my chances of developing MS in the next 5 years drops from 50% considerably.

Has MS progressed any in your case? Have you developed any new lesions since? Has your disability increased?