Hi Ladies, I just need to vent and I thought of you all because so many of the wonderful ladies on this board have been so supportive and I know I echo many, many women who feel saved by this board.

Here goes..back in August I started have these horrific migraines and face/neck pain. ( I also was in a car accident about 6 months previous to this that I took a blow to my neck) Long, long story, my doctor finally ordered an MRI. I did an open MRI because I am claustrophic even with drugs. Well, the MRI came back abnormal, it showed that I had a "suspected aneursym". Well, I don't think I need to say what that did to me. In a matter of days I was being rushed for a CAT along with an Angio CT scan to look at the arteries in my brain. So, during those few days, I waited. I cried, I thought there was a chance I was going to die. I have never felt my own mortality to this extent. ( No, I am not trying to be dramatic..it was truly a life changing experience) Also, during that time I was scheduled to see a top notch Neurosurgeon. So, after I had the test, I waited 24 hours and at 7:00 the following morning my family doctor phoned me and said there was no aneursym!!! He said it was probably a misread!! I cried, I was so happy, so relieved, so thankful. My family was crying..it was unbelievable. A few days later, I did go see a Neurologist and he was dismissive about most of it, but he zoned right in on something else..MS?! He said I had white spots on my brain and there were alot of them for my age..it also stated that on the MRI report ( but he did state it could also be from migraines). But here is the thing, I have had about 6 or 7 MRI's in the past 5 years because of migraines and dizziness and they all showed that. I even went to a Neurologist years ago when they first spotted them who dealt with MS and he said he was not concerned about the white spots, that on a scale of 1 to 10, they were a 1. So, I let it all go and moved on.

So, what now???? My family thinks the doctor is crazy since they have been there for years, I don't know what to think anymore.

I know in the past several months, I feel different. Is it hormonal, I just don't know. I go through bouts of balance problems, but I was diagnosed with a inner ear disorder 10 years ago. I get vertigo or feel "off balance" ( currently going through that right now), I get migraines, very tired, my legs at times will feel heavy, I jerk and twitch more and more during certain times of the month when relaxing, I am anxious and sometimes feel like my body is so wired I am just going to jump right out of my skin! Then I have periods where I am so tired I feel like I could fall asleep at my desk, mood swings, extremely forgetful, brain fog.

Is this really hormonal or could it be MS?? I just hate to think that after all the tests I have had over the years, nothing was ever found except for this..I guess I am just scared. I have to go back for my follow up in 2 weeks with the Neurologist and I am so anxious and nervous because I am terrified he is going to say something to scare the "you know what" out of me!!

Thank you for reading this post, I am so sorry it is so long but I just needed to get it out there.

Hi Sunny,
I've had the same report from a neurologist...white spots on my brain after I'd had a profound "dizzy" spell some years ago. He suspected that it "could" be MS but didn't really think it was. I was supposed to go back for another MRI w/ contrast 6 months later to see if it had changed/gotten worse. I never went back. Not because of anxiety but because 1) I had had no more problems and 2) the MRI was so long and I was in pain for several days due to back pain from laying on that darned hard table!. I figured as long as I wasn't having any problems I wasn't going to put myself through that again. Guess what? It's been several years now and no problems. If it was MS it would have very likely reared it's ugly head at least occasionally since then. In a nutshell, I'm trying to reassure you that if those white spots have been in your head for years and haven't changed, if you've had a history of migraines already, you've been diagnosed with an inner ear disorder years ago, chances are EXCELLENT that it's NOT MS. And that's not even taking into consideration PERI and all it does to us! Try to relax Sunny. You have migraines, an inner ear disorder (?Meniere's?) and white spots that are stable and peri. That's a lot for anyone to deal with but it doesn't sound MS to me at all! Hang in there, I'll say a prayer for you!
xoxo
Jan

the same thing happened to my sister
she went to the e.r got mri they said possiable clot
will operate in morning, all nite long she was in state of panic
come morning and the head guy comes by and says a new guy read the mri wrong.....
wtf, how many of them go un-noticed i wonder, their idiots....

my sis also had white spots, they said it comes from migrains

Thank you Jan and NC so, so much!! Just hearing those words of comfort, well, I know it has been said a thousand times before, thank you sincerely, I don't know what I would do without you all.

Thank you for taking time to reply and I hope you have a good "non Peri" day~

(Jan - Yes, they thought 10 years ago after many tests it was Meniere's. It can be dibilating at times)

Doctors never really realize how unsympathetic they are being. They don't have to be the ones to hear the "bad" news or their lives being turned upside down. They just come in, do what they are supposed to and go on about their day. Most of them are too rushed to go on about their day. I went through the whole possible diagnosis of MS a few years back. I had a brain MRI, electro-conduction nerves tests, blood work, etc. . My neuro still didn't have a definite answer for me, but said she was leaning toward it NOT being MS. WTF?! She wanted to do more MRI's but that's where I drew the line. I could barely go through the 2 that I did without freaking out. So I stopped going to her. She did find that I was B12 deficient and I have to take shots every 3 weeks for life. I figured if it's MS then more symptoms would rear their head..so far, nothing. I can't tell you how many women I know have been diagnosed with possible MS, went through the tests and no definite answers...I am beginning to think it's what they tell you when they just don't know!

Ohhhh, My Gosh Sunny,

I have a severe fear of doctors and a story like this only confirms those fears!!
I really don't know what to say? For me I would have to follow my gut feeling.
Is that the smart thing to do ..I don't know!! I can tell you I don't trust doctors!!!!
I can also say I don't think I would be comfortable accepting if "this" doctor did in fact come back with bad news!!
I would always question his opinion!!

You take care .. I hope this has not caused to your head to start hurting like crazy!!

Sending my hugs,
Vaylorie

Dear 'sunny98'
Sounds like you have had quite a hard time lately and been scared un-necessarily which Doctors are good at.
Everything you describe is typical of Menopausal symptoms so please just try to take it easy.
Many of us have had awful experiences with the Medical profession.Most of them are very unsympathetic and throw out their diagnosis without a care for the patient's feelings.Am fairly sure that all of us have some white spots or other harmless lesions on our brains that do not affect us in any way.
It is good you came here to your friends.We are all here to support and wish you the best.
Am sure all will turn out to be fine when you see the Neurologist again so please keep us informed!
Warm Hugs
Elizabeth

Thank you ladies, so very, very much.

I am sorry too for those of you that have had a bad experience/experiences like myself.

It is reassuring to know that this could be hormonal..major sigh..ever since that "health scare" I feel like I get worked up so easy now, like the slightest ping or pang..and I am thinking it is something major or I am going not going to wake up.

I will try and relax and I will let you all know what the Neurologist says..yikes. I asked my husband at lunch to go with me, so hopefully he can make it.

Jan - I think you are soo right..we all do have some white spots/legions on our brains..it is a part of aging. My husband said today that alot of people probably have more than me and just don't know it because they did not have an MRI to find out and don't have MS...made me feel a tad bit better

Thank you all again, can't say that enough!

Oppps... I meant to address "Elizabeth" not "Jan" regarding white spots on the brain!!

See what I mean, if my head was not attached, who knows where it would turn up??!!

I just went through this also. WEnt to neuro for sleep problems. For two years now I have been leaping up from sleep and I was scared it was seizures. Had eeg and sleep study and no seizures. So neuro also wanted Mri. I had some tingling in my head and face and leg pains at night. I got the report and it said bilateral lesions in posterior subcortical frontal lobe. I was so scared that I had a stroke but at my neuro appt. he got arrogant and impatient when I voiced my concern about the lesions being maybe lack of blood going to brain. He said it was just from probably an old bump on my head from childhood. Well I did have an mri back in 97 which was normal. The radiologist compared and said "new" lesions on the frontal lobe. So it would have been nice if the neuro would have even taken the time to look at the report that said "new" and not make me feel like a hypocondriac for asking questions and telling me it's from childhood bump. I was afraid to ask anything else but I managed to annoy him with my lower back and shaky, painful leg symptoms. So he told me to get a Mri of lumbar as well as upper back. So I'm waiting for those results. It's been a week and he hasn't called. Guess I have to wait to discuss this at my appt. in December. If this neuro just could have taken five minutes to explain what these lesions could mean and what they don't mean, it would have made such a difference. Instead I walk out still worried why I have white matter lesions at 51 on both sides of brain. I also just found out that I will need a steriotactic breast biopsy after abnormal mammo. My gyno eased my mind by telling me to come in and speak instead of on the phone. He explained everything and even said his wife just had one for the microcalcifications and it came back benign. It made such a difference in my fear by just simply him sitting down and explaining everything and answering my questions patiently.

Now I didn't use to fear the Dr.s but I was young and wasn't expecting any kind of dramatic news or results from tests. Those were the days, just "knowing" instinctively I was ok. But, being able to go and take care of any issues I may have been experiencing without obsessing over results.

Fast forward to now -- I will avoid the Dr. at all costs. Many have probably read my posts where I say I give everything 6 weeks to resolve before I even think of the Dr. office, so far that has served me well (that and xanax, lol). You go in for one thing and they throw all these anxiety provoking tests on you that you get to wait 2 weeks for results. They have no idea how many of us are. I even share my phobias and fears with them. The assistants seem to be more sympathetic, however, the Dr.s I have gone to are woefully inadequate in empathy. Last year showed me that. This year gotta work up to the pap smear at the very least. Other than that I'm staying away. I had blood work, mammogram less than a year ago, I'm taking a break if I can. I just hope that nothing untoward shows up that forces me back there. It has just been a difficult year and I need a little break ok a big break. Last year I thought I had MS or something neurological, my Dr. did say I didn't present as having MS but after that she proceeded to tell me "I was a grown woman and not a child" after I was shaking like a leaf and crying. This was my first experience with peri panic/anxiety, I was overwhelmed. Nice doc, NOT.... and not my Dr. anymore. Mich

Sunny, don't worry...this all sounds very peri to me! I am in total agreement with the other ladies here, just relax! Let me say this to you all ...... we'have many "dr." friends, they are in different fields, mostly specialists. You don't know how many times i've heard them say THEY DON'T KNOW what is wrong with a particular patient....so, they just tell them their best guess. Now , they don't tell YOU that, but that's what's happening. This is only a SMALL part of the things I could tell you we've talked about over the years, but I wanted to reassure you sunny, that most likely, this is nothing to fear! As you can tell from the other ladies, they have all had their share of nutsy dr. situations, or the tech reading the MRI wrong! STUPID! NO EXCUSE! I can also vouch for the insensitivity with which they operate .... most of our friends, are basically good people, BUT, when they "don" that white coat, they become the "dr.".... and you are "the patient"....that's not me, i could never treat another human being like that. I would ALWAYS consider them a PERSON! The "transformation" is amazing..lol... and at the end of the day, it's back home, to family and friends.......and dinner! The "bedside" manner with which they operate, depends GREATLY on their own personalities! We know some, who are WONDERFUL people, warm, friendly, smiley, and actually STAY that way, once the dreaded white coat is on! So.......it's also the personality. You do eventually become a number to them, unfortunately, because they see so many people all week. However, that is NO EXCUSE..... and Iv'e had plenty a conversation with our friends, reminding them of that ....lol.... they do have a tendency to just throw out their "thoughts" to the person, when they're really not sure ..... so.........if i were you,,,,i'd relax, don't take these dr.s to seriously...I know, there are prob. many here who would disagree with that, but, in all seriousness, it's quite true. You have to listen to your own heart. In fact, most of our friends, have agreed, that the best "patients" are the ones who KNOW THEMSELVES enough to work WITH them, because all they have to go by really, are tests, which aren't FOOL PROOF! They may ACT that way, but underneath, is just a human being, who many times, doesnt have the answers! You don't know how many times, either over drinks, or dinner, or whatever.... I've laid into some of my friends for this!.... lol ..... I believe, if they don't know what the heck is wrong with you,....DON'T JUST SAY WHAT YOU THINK it may be! geez! People get really scared, and rightly so!


Sunny......... you are ok. If this were MS, you'd have had more symptoms by now, just like the other ladies said to you. Most of what I read, sounded very peri.

We are all here for you ........ and believe me......i've had my panic moments too! There were many times, i thought for sure .... THIS IS IT! Yes, that definatley is life altering! How can it not be? You change after that.
But listen........you're ok....dont worry!!!!!

I too have white spots on the frontal lobe. Apparently there is some kind of pattern they should form conform to (the McDonald criteria) for diagnosis as MS. My MRIs were taken 6 mos. apart and there was no change, therefore, no MS diagnosis. I have a friend who had the same type of evaluation because she was having the tingling in her hands and legs. Her spots disappeared within six months.

I guess I'd just like to reassure you that others have the white spots and no MS. I'd be willing to bet that a good majority of women presenting with peri symptoms have gone through the good'ol MS workup. If you are not satisfied after speaking to the neurologist take your reports and images to another.

Just a side note since we are on the topic of MS. In a recent magazine from the Life Extension Foundation was an article regarding research that is being done using progesterone as a treatment for MS and brain injuries. Here is a link to the article:

http://www.lef.org/magazine/mag2009/nov200...n-Injury_01.htm

Thank you ladies, you are right I know you are...I think it is completely fear based for me right now. That, and knowing I have to go back for my follow up with the Neurologist. Also, I did not do what he asked of me to go to a MS Specialist. I am going to bring him all my MRI reports, all back to 2005 and show him that I have had these white spots or lesions since then and the largest one has not changed in since in 4 years..so that should account for something?!

My Darling - thank you for telling me about your dr. friends. I know there job is hard too, so I am understanding of that, but sometimes I think if the shoe was on their "foot"..they would remember we have feelings. Now, not all of them are like that, but I think more and more because of how insurance and such is going.

Thank you again Ladies, I am blessed to have you all.

Sunny