[shortfusion]

Hi..new here. Wanted to introduce myself and give a little history and ask what yall thought. I am a mom to an almost 4 year old and wife to my high school sweetheart. I'm almost 28 years old, and I live in WV. Nice to meet you.

please if you are reading this, bear with me because this is hard to deal with as I am sure you know and probably a little wordy...

I had my first real 'attack; in Dec. and lasted about a month give or take, but it was paroxysmal. It had been creeping up on me bc i remember feeling very tired to like the point of almost feeling drunk for a while before this happened.

I was inthe store and I remember feeling very dizzy and lightheaded and hot. I started getting visual things like a dot in front of everyone face and the lights were weird. I chalked it up to being tired again, went home and rested and that was that. About a week later, I woke up and could not urinate. I went to ER bc I thought I had another stone. But no stone no infection and I was eventually able to urinate myself--- no cath. The next day I woke up and could not urinate again, I had to push it out. Then I laid back down and my whole feeling from waste down felt tingly... but like it wasn'tthere. Very odd. It lasted about 1/2 hr or maybe more but I went back to sleep. i woke up and my balance was very bad. That night I was urinating like every 10 minutes. My balance stayed bad for several weeks. My legs felt very heavy like walking in cement and I was very foggy tired. I could not and still cannot do heal toe with eyes closed, I almost fall over. My balance and coordination were terrible.

I also developed a twitch-like whole body for 3 days straight during this time.
I went to see my PCP and I had abnormal hyper reflexes and + romberg. She scheduled MRI, and I began to see this neuro.

My MRI from Dec reads
" there are focal regions of abnormal signal within the periventricular white matter. The largest lesion is adjacent to the posterior aspect of the body of the right lateral ventricle and is somewhat ill defined and measures 9 mm, ovoid in configuration. Within the right parietal corona radiata, there are 2 additional rounded foci of white matter signal abnormality measuring 2 mm and 3 mm respectively. There is a 2mm rounded focus of abnormal signal within left frontal white matter. There is one additional lesion seen within the parietal white matter within the left hemisphere measuring 7 mm just lateral to the atrium of the left lateral ventricle"

So my neuro tells me that I had a few pinpricks of dots that he thought was normal. I got the mri myself after that though--- and remember being shocked. I questioned him as to why he and the radiologist have such conflicting reports and he gets all cocky with me of course...

No O bands in spinal tap.
VEP was within normal range, but again I am confused bc neuro said 'there may have been some discrepancies and we may have to redo it' but didn't yet. He said they start to get concerned when there is a 10 ms delay, and mine was about 8 ms bw the 2 eyes, so the lab states it is 'still within the normal range'
I went to an opthomologist recently and the good news is he said my optic nerves look ok, but my vision is fine so no reason for the weird visual stuff. He said he is sending a report to the neuro about how my left eye (the one that periodically hurts and give me issues) has 'different retinal cells' from the other one.

B12 fine, thyroid fine. I do have a venous angioma that he never even mentioned to me. He also never mentioned my 4 cm ovarian cyst or my sinus problem and had I not gotten the report I might have not known. He said he thinks the radiologist made more out of the brain mri that what it was.

I had a follow up mri after 6 mths and the good news is there is no new lesions, the other news is that a different radiologist read it and sees the same things the first one was. So call me crazy but I don't think 9 mm lesion is normal for a 27 year old. The did not ever enhance.

I asked him about Lyme, he said it's not around here (I live in the northern panhandle of WV!) I asked about Lupus, he said it is very rare and to he doesn;t know much about so I should see a rheumatologist. THEN he said to me after I was asking him where I stand with ms, which he does not believe I have, that 'it's almost like you want ms'

I said EXCUSE ME? I was about to start balling. I said nobody wants ms, I don't want ms or anything wrong with me. but something happned to me and I want an answer and things don't make sense here with conflicting reports.

I'm so frustrated and scared and tired.

I get weird shooting pains or hot poker pains, my eye hurts just occasionaly but I don't think I had a full fledged bout of ON yet, I get dizzy, I have been getting headaches more frequently, I get muscle twitches, my balance goes a little loopy every now and then, but not like december...I just feel blah and tired.

I don't know what to do. Part of me needs and answer, part of me wants to just forget about it. I am afraid if I go to ms clinic that I am being dramatic bc my brain is not that bad according to neuro.

What do yall think? help is appreciated

Thanks...

[Blessings2You]

You asked what we think, and I think you should definitely NOT just "forget about it". You know that there is something wrong, and you need to find out what it is, or at least rule out everything you can possibly rule out. Specialists indeed would be in order.

The experience you had with dizziness and visual issues (dots in front of people's faces) sounds like migraine (I used to have them, and I could only see parts of people's faces). There is such a thing as ocular migraines, where you have those symptoms but without pain.

I understand that migraines can also cause lesions, BUT don't hear me wrong--I'm not saying that I think you "just" have migraines. My doctor suspected that at first with me, since I had a history of migraines back in the day. I was eventually diagnosed with MS (after a year and a half of tests).

Anyway, I say do continue to seek other opinions. If you have something that can be treated, you want to start addressing it as soon as possible.

Please keep us posted! And welcome to the community!!

[SallyC]

First, kick that Neuro where the sun don't shine and get a new one, preferably a MS specialist with a better bedside manner.

Feel better soon..

[Dejibo]

Find an MS center. Seek their help, and direction. they are very good at ruling out ALL other things before they slap you with an MS label.

PLEASE dont give up! Most of us have walked a fair mile or two in those shoes. NO ONE wants to be sick! NO ONE! What we want is answers to WHAT HAPPENED TO ME!?!

I have that flash bulb thing in my eyes. I suffered from Optic nueritis and that is one of the halmarks. Please, send this neuro packing, and seek higher ground. NO ONE in the medical field has the right to treat you that way. Even if you were faking or looking for attention, they have NO right to treat you that way.

Come back and tell us what you chose to do.

hang in there.

[tkrik]

Sorry to hear you are going through a rough time. I would definitely seek another opinion.

As B2Y mentioned, migraines can cause lesions as well as other neurological issues and not cause a headache like you typically hear about. Lesions can be caused by many other things as well not just MS. Even a virus can cause lesions, old head injuries, etc.

My concern would be the venous angioma combined with the neurological symptoms you are having. I certainly would push to get that looked in to more closely and/or get a 2nd opinion. Generally, although venous angiomas are rare, they don't do anything to treat them unless neurological symptoms start appearing (or so, that is my understanding), then they start investigating more.

Please do not hesitate to get another opinion and let us know how it goes. Many of us have been through the years of not knowing and can certainly relate to what you are going through right now. Additionally, many of us have seen different specialists including MS specialists. It can take some time to find that doctor that you click with and who will be your champion.

I am glad you found us and hope to see you post more. Let us know how you are doing and what you decide to do.

[Riverwild]

I agree, a new neuro is in order. You pay a doctor to find out WHAT is wrong with you. When a doctor you pay dismisses you and your symptoms and your concerns, he/she isn't worth the $$ you pay.

I have what has been interpreted as a venous hemangioma on my MRI of the brain too. It's always in the same place, doesn't change and I had the lesions and O-bands that trumped it.

I've always gotten copies of all my test results and MRI disks and summaries of my doctor appointments. It comes in handy if you have to change doctors for any reson and I wanted them for my own peace of mind. Tell everyone who does your tests that you want a copy. Tell every doc you want copies and summaries. Keep a running journal of everything strange that happens. If you are having symptoms, see a doctor when it is happening so it's documented.

Everyone who has posted before me has good suggestions. It could be something else. The problem is finding out WHAT it is. Don't give up. You know your body and you know what is normal and what isn't.

Good luck and let us know how it goes!

[Natalie8]

I second what others have said. Collect copies of your medical records and MRI's and seek out the opinion of an MS specialist. Regardless, you need a new neurologist that will listen to you and not dismiss your symptoms. This guy sounds like a real jerk!

I have a venous angioma too. I was just told it was a congenital abnormality that some people just have in their brains. It doesn't cause any problems except in RARE circumstances.
I don't know how accurate this site is but you might want to read this about the venous angioma.
http://www.brain-aneurysm.com/dva.html

On top of that I have the classic ovoid MS lesions and elevated IgG index and IgG synthesis in my spinal tap (no oligoclonal bands) so they diagnosed MS. The venous angioma, again, was just viewed as incidental and unrelated...kind of like having a birth mark in your brain!
Good luck and keep us posted.

[NurseNancy]

welcome to NT shorty (can i call you that?),

it sounds like you've done a masterful job of being your own best advocate.
all the above advice is sound.
i third the opinion to get another opinion, preferably from an MS specialist.
you can call your local MS society for referrals.

keeping a timeline journal of dates and sx's will help the dr with your H&P (history and physical).

and, always keep copies of mri results (cd's), reports and copies of office visit dictations. if you ever see other drs, or even apply for ssdi at some time, your own records will be invaluable. you're right. you do get the whole truth by reading for yourself.

good luck and please keep us updated.
if your vision gets worse try seeing the eye dr again to rule out ON.

[shortfusion]

Thank you yes, I definitely need a new one. Even from a common sense POV, say my lesion were just normal... or I was born with them or something...obviously they started 'firing' wrong for some reason and I don't understand why a good doctor wouldn't want to get to the bottom of that. And I have to bring lupus and lyme up to him? Seems like that would be pretty standard testing to me.

I am wondering about the migraine thing though but the funny thing is, I was never a headache person prior to December. I never really got them. Then I think I had a they call it a opthalmic migraine or something. But now I get headaches. I read about migraines and they don't come with neuro 'attacks' like the one I had in December aside from the visual/vertigo.

Do you think this mri sounds not very good. I dont think 2 mm foci is a big deal necessarily, but 9 mm just seems awful big to me to be not a concern.

I'm not sure whther to go tothe Cleveland Clinic or UPMC. Anyone know anything about either one of them?

[azoyizes]

Hi SF, and welcome to NeuroTalk!

It can be very frustrating trying to get answers and a diagnosis, and finding a good neurologist. I've heard the Cleveland Clinic is excellent, but have had no experience there myself.

Good luck, and keep us posted!