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not being taken seriously
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not being taken seriously

Dear Dr.
For the last 15 months i have had symptoms, ( will outline below )
I am very pro-active and have had 3 brain mri's all with and without contrast,1 cervical,1 thorasic both with and without
baer,visual evoked potentials,emg's,and many different eye test
all test were normal exact brain mri's which shows white foci in various locations
i am 30 female no health issues,i have seen 4 different neuro's two of which are in comprehensive ms hospitals, you may even know from resisency at Jeff...
also have seen Sergott at Wills for eye
no diagnosis, no ms, or ON?
anyhoo I keep being brushed aside, why, because i look completely healthly and have been told i need to see a shrink!my symptoms are not anxiety related :
started with strange feeling in left eye, slight blurriness, i see colors different in different eyes, ( though i see reds fine, just brighter colors in right eye),was told i have a astigmatism?
I have never wore glasses and sometimes vision in left eye is fine other days its blurry, i know plently of people who wear glasses and their vision is always off, not at certain times?
I also have a sense of pressure in my left eye pretty much all the time , i really can't take it anymore
i slurry my words consistently or say the wrong word, feel like speech isn't fluid
tightness behind my left knee, in calf all the time
get tiny little muscle spasms, bfs? that only last for seconds, can be anywhere in body
have tightness in throat, Cricopharyngeal spasm? almost everyday
neuro's say spots in mri not consistent with ms, iam 30 don't have migraines no other problems shouldn't have spots on brain, coupled with the daily symptoms? It doesn't add up.
even my report from the radiologist says looks like early ms in his report the neuro's didn't take much stock in that
I have gone as far as to type all this up for neuro's but it doesn't help...
who do i go too now?
thanks
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669758_tn?1242334351
You have been to excellent physicians, who are very good at diagnosing MS and related diagnoses.

You may have visual problems, but they are not optic neuritis according to one of the best neuro-ophthalmologists in the world.

25% of people with migraines have white spots on the brain.
Have you considered seeing a headache specialist? I assume you are in Philadelphia amd Jefferson has an excellent Headache Center. Tel. (215)955-ACHE
18 Comments
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Avatar_n_tn
i stated i DO NOT have migraines......?
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152264_tn?1280358257
Do you have any family history of migraines?

Migraines do NOT have to involve a headache. They can cause a lot of weird symptoms even in the absence of a headache.

I had NO idea I was a migraineur until age 42, when I got an ocular migraine (flashing lights in the eye for half an hour). No headache associated with this.

I'm not saying you're a migraineur, only that it's POSSIBLE to be one without knowing it. If any of your relatives (parents, siblings, children) have migraines, there's a good chance you might be a migraineur too, because it runs VERY heavily in families.

Best of luck getting your symptoms figured out. Unfortunately, MANY people have a variety of odd symptoms that are never explained, and/or end up having some other explanation in the fullness of time. Since you've had repeated MRIs and neurological exams without anything significant being found, the best you can do is manage your symptoms (including the normal anxiety associated with having unexplained symptoms--anxiety that can, as I'm sure you know, cause a lot of symptoms itself) and just concentrate on your life. If ever anything happens that significantly disrupts your normal life and work, then you can go back to the doctor.

It seems that it's not uncommon for a radiologist to say something could be MS but the neurologist discounts this. It's the NEUROLOGIST who makes the diagnosis, based on all factors, including the office exam. Lots of people have unexplained "spots" on their MRI. The radiologist reported on my MRI that my "spots" changed over time, some disappearing and new ones appearing, making MS "likely," yet the neurologist did not think my MRI was significant. So, this discrepancy is not unusual.

Best of luck,
Nancy
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Avatar_n_tn
thanks for your feed black i had ocular migraines in my late teens for a couple months, i am well aware of them....quite frankly what is most frustrating is not the spots, i won't care if my mri looked like a snow globe if i felt normal...its the fact that every 20th word i say is slurred, pressure in eye etc etc is present with the combo of a irregular mri, its not normal and i feel i am having a terrible disservice but beening instincly viewed has a "typical young woman who reads too much on-line" sorry to curse but thats bull****, months ago i spoke normal and had no pressure in eye ...something is very wrong
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152264_tn?1280358257
Hi Renee. No one knows better than I do how strange it is to know (to feel concretely in your body) that something is wrong but doctors cannot tell you (for sure) why. And it's part of their job, whether we like it or not, to be suspicious that the patient is anxious, hypervigilant, etc. etc.

I know the frustration of being "pigeonholed" with the ASSUMPTION that one's symptoms are due to anxiety (even though I have--in addition to the "spotty" brain, which I accept can certainly be due to migraine activity and/or blood pressure or cholesterol--a severe hearing loss and highly abnormal auditory evoked potentials bilaterally, plus Lhermitte's and other stuff that they can't see).

Nothing hurts me more than people (doctors or otherwise) making WRONG assumptions about my reports, intentions, and motivations. I know the doctors have to do their jobs and that if you don't have objective findings or significant impairment in your life or work, they just can't do much. I just hate having them THINK I'm a hypochondriac.

However, they DID try, and partly succeed, in helping me find solutions for my worst problems (dizziness and hearing loss). This is really all you can hope for.

You cannot expect doctors to do endless investigations (and it sounds like you've had enough investigations to rule out getting a diagnosis of MS or anything else really bad--at least at this time, and they can't diagnose something that might possibly develop in the future, does that make sense?). BUT--you CAN and of course SHOULD expect them to help you with your worst symptoms.

Given that you are a known migraineur, it might be a really good idea to try a headache/migraine specialist. Maybe they can tell you if that's the cause of your eye pressure and speech slurring? I do know that migraines can affect speech. And the little "nose headaches" I used to have (pressure/pain in the front of my head) which I assumed must be "sinus" for no reason, well, I'm now sure those were migraines too!

Have your family, co-workers, etc. noticed your speech slurring?

Hang in there--try to get some relief for those worst symptoms (and don't rule out trying anti-anxiety solutions, which can really help some people--anyone in your situation would be anxious even if anxiety is not the underlying cause of your symptoms). And then turn your attention back primarily to your life, knowing that you have LOTS of company among people with undiagnosed symptoms.

Even where I work, with a small staff, there are at least two people with very mysterious things--an unexplainable numb patch, a painful growth in the groin--that the doctors just eventually threw their hands up at. It's not necessarily their fault. You've gotten second and third opinions if not more, so sometimes you just have to stop beating your head against the brick wall, or at least go in a different direction (i.e., migraine specialist?).

But--as you probably know, you do NOT have to have a diagnosis to expect treatment of some kind for your worst symptoms, the ones that are affecting your daily life. Just be open-minded, try what the doctors suggest (sometimes it will surprise you when something works!), tell the doctor in what ways your symptoms are affecting or impairing your daily life, and accept the reality that not everything can be diagnosed no matter how hard we, or the doctors, try.

Very best of luck to you!
Nancy
P.S. You may know this already, but migraine activity can change over time. A migraineur may have certain types of migraine activity at puberty, different at later times in their life. For example, I had small daily headaches in high school (which I never mentioned to anyone because I thought everyone had headaches), which I now believe were migraines. At another stage of life, it might be attacks of dizziness. At another stage, eye problems. Later in life, attacks of nausea and diarrhea. Etc. etc. Migraine is WEIRD stuff.
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669758_tn?1242334351
I trust that you are not implying that I said anything like this:

"typical young woman who reads too much on-line."


I am simply here to give some direction but obviously I do not know how you feel or your examination.

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556500_tn?1222342230
It does not sound like ms. be grateful it is not. take one day at a time stop, smell the flowers and thank god for good health. Everyone has little strange issues healthwise.  I have ms. I dont think about it often. it occasionally comes to my mind but i like to forget about it. (i dont dwell on it)  As long as i wake up and can enjoy my life and do whatever suits me.

Both of my daughters have migrains from time to time. once my youngest was called out from school because both of her pupils were dialated. we went to the opthamologist whom sent us to the er. she had a ct. they eventually told us she must of had a migrain (orbital) she had no pain
My older daughter had a strange migrain she actually saw a "color wheel"  or prism thats the best way i can describe it. eventually we went to a neuro whom sent us for a mri- which had white foci or matter. which is indictative of migrain syndrome. thank god it was only that.
good luck to you and your health,  one day at a time. fyi, ms symptoms do not come and go right away. if one were to have an ms exacerbation it can last several weeks to months (maybe permanent)    not have (ex;)  eye blurries on monday then gone by tuesday then  onto something else. (it varies thats why its called ms)
camille
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669758_tn?1242334351
The "light wheel" is probably an aura -- classical migraine
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Avatar_n_tn
no dr. did not imply you thought i was reading too much on-line but have been spoken to in that way by 2 neuro's in person. its very discouraging, i feel like unless i walk in blind in one eye they haven't the time, and i do feel though for some of the doc's i have seen its like waiting in line at the deli counter, very impersonnel, that cart you in and out quickly, check over reflexes and send you packing, they are so busy i think they forget who they are talking too some of the time, its a shame so many people are sick and dr's are so over run with appointments
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Avatar_n_tn
hi again thanks for all your insight

yes to the question regarding my speech,people do notice
( i am in sales and it is really effecting my employment)....besides just the slurring, its the saying of the wrong word, or wrong/strained word retrival, ( theses are tell-tale ms signs )
i can't find anything else out there that wound cause a 30yr old to slur words so badly....( also the weird tightness that comes when i speech alot, spasm?)
( no i haven't had a stroke).
also my typing is a mess, not one or two mistakes, every sentence has errors..I have to re-read email several times to correct,.these symptoms. have never faded and are increasing over the months,
i wanted to ask the DR. if he felt the cervic mri is more telling in speech related issues then brain?  all I know is its  so scarey when your words don't make sense and your told your fine!!....i went from being a talkitive person, to only speeching when required, everyone wants to know whats wrong with me , why am i being quite, how do you say...hmmm because i slur my speech, but don't worry neuro says im fine....

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669758_tn?1242334351
Continue the work-up but I am not sure what telltale signs of MS are.

Cervical lesions could lead to swallowing difficulty but not the speech problems you are describing.

Ask your neurologists to clarify what they do think is causing the symptoms.
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669758_tn?1242334351
Continue the work-up but I am not sure what telltale signs of MS are.

Cervical lesions could lead to swallowing difficulty but not the speech problems you are describing.

Ask your neurologists to clarify what they do think is causing the symptoms.
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669758_tn?1242334351
Continue the work-up but I am not sure what telltale signs of MS are.

Cervical lesions could lead to swallowing difficulty but not the speech problems you are describing.

Ask your neurologists to clarify what they do think is causing the symptoms.
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147426_tn?1317269232
I believe what Dr. Kantor was saying about the tell-tale signs of MS is that there are NOT any real tell-tale symptoms that a person has MS.  There are no symptoms that point directly to MS.  With only a few exceptions, the symptoms of MS can be seen in quite of few other diseases

When people with MS have cognitive difficulty they very often do have the word retrieval problems you mention, but that can also occur in other disorders.  You mention several things like mixing up words and language problems that indicate problems within the brain and not from a cervical lesion.

Quix
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338416_tn?1260996698
The after-effects of an ocular migraine include momentary confusion and dizziness, so it doesn't exclude migraines from possibility.
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Avatar_n_tn
i haven't had a ocular migraine in 8 years.....so i think i pretty much rule that out
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572651_tn?1333939396
Hi Renee,
We would welcome you over on the MS forum - either as a visitor or regular.  There is lots of information in our health pages that relate to the questions you have asked here.  

We're a mixed community of people with MS diagnosis, waiting in limboland for more symptoms to speak up, and actually several people who have been diagnosed with an MS mimic, such as Lymes, but like the company so much they just can't leave us!

There's almost always someone around to help out with questions or just general concerns.

The forum with all of us can be found at
http://www.medhelp.org/forums/show/41

I hope we'll see you around,
Lulu
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152264_tn?1280358257
Renee, even if you don't have an OCULAR migraine, you could still be having migraines. They can manifest with different symptoms at different times in your life.

It's a huge mistake to think that if you don't have a headache or the flashing-lights-in-the-eye, you cannot be having migraines. Migraines are a complex phenomenon--a cascade of neurological and vascular events in the brain that can affect various parts of your nervous system and your gut as well.

I'm not trying to say your symptoms are caused by migraines... only that you should not rule out migraine because you didn't have the typical ocular disturbance.

Migraineurs remain migraineurs for LIFE. Some of the symptoms may go away, but different ones may pop up years or decades later.

Best wishes,
Nancy
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