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gonna leave site & 2nd neuro update
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gonna leave site & 2nd neuro update

I know many of you out there are very doubtful and get angry when dr's think it is stress or anxiety, but in my case i have had severe anx/panic ocd for years all before the last 2 months events

reasons why i should stay off site:
its making me crazy, ha but really

this is what all dr's said:

MS Sociey member neuro said through my mri was abnormal but no ms
one eye dr could not find a thing wrong with eye inlcuding oct scan, and very thorough exam
second neuro-optom Head Wills EYE hospital found nothing wrong with eye either including second oct scan
bear fine
ver fine
3 office exams with different neuro's fine
2nd app in MS department Thomas Jefferson hospital philly same findings: mri not constant with ms, not nearly enough evidence of even possible ms

on a side note i have made myself loss 10 pounds only weigh 100 to begin with, think i have werid body senations all the time, twitching when stresed, ( only starting twitching once i read about it and ms)
and other host of things but all seem somatic systoms that ONLY appeared after i had the abnormal mri and self diignosised myself with ms

I am not saying that things couldn't pop up later in life but i really scared myself to death and some of the post and comments were basically like, " you have it",  

do you guys ever believe you dr's?
i mean i have seen a lot and they all say the same thing and many are seriuos MS speclists...

I guess to those still waiting for a dignosis i believe it is possible to have an abormal mri, stress yourself out to the max develop syptoms (symptoms) ( I developed all my sympotme in 6 weeks time), and not have ms (atleast not today)

Happy Thanksgiving and you are all so amazingly strong it boggles my mind, you are an inspiration!
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25 Comments Post a Comment
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Rene,

You are one strong lady too and you can do it.  

I think you should trust your doctors and put MS out of your mind for now.  You have had detailed and comprehensive exam.  Give yourself at least 6 months of honestly not thinking about or researching MS.  Whatever happens in the future will happen, but you should be reassured for now.

Happy thanks giving!  Many Blessings.

Sally
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My brain MRI's never showed a whole lot but my spinal MRI did. I had an MS specialist tell me that everything was in my head and I should quit reading the Internet.  It upset me very bad because I know my body and I knew that my symptoms didn't start after I would read something.  

I think that most of the undiagnosed people here sorta resent what you said.  Most of the ones I have talked to know the difference of it being a head case or knowing their own bodies well enough to say "hey, this aint right".  

I sometimes read things and think wow, I have that or I do that but just because you have 1 or 2 symptoms doesn't mean it's MS.  It's a matter of process of elimination and we are all mature enough to realize this.  You can have ON and nothing else and still be diagnosed with MS.  

When we tell you that yes you have all the symptoms it could very well be MS.  How do we know that you don't develop your symptoms until after you have read about them somewhere else?  I may be taking your post personally, and if I am I'm sorry, but we don't know what's going on with anyone because we are not doctors.  (most of us)  All we can do is tell you weather or not your symptoms sounds like ours or don't sound like ours.

I truely hope I have not offended anyone and if I have please let me apologize now.  I love each and everyone of you and would never do anything to upset my dear friends.

I'll be praying,
Carol
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I agree with you, Carol.  There are so many bad neuros out there.  People have to get information and have a knowledge base before going to a neuro.  Don't you research a car before you hear the sales pitch?  Many people diagnosed with MS have been told everything is in their head at least by one doctor.  that doesn't mean you stop looking for doctors and information.

And besides,personally knowing some people who have gone to the MS center in Jefferson, have been told they do not have MS and then two years or more later are out on disability because of (surprise) MS, I would not ever let the MS center in Jefferson hospital have the last word.  

Craig
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I too hope I did not take your post wrong. If you really read the posts, when someone finds a good doctor - whether they say MS or not - everyone is genuinely thrilled for them. Of course there are good docs out there, but there are also a lot that are not good/responsve/whatever. Of course there are folks out there who have mental health diagnoses, and of course that can and does factor into their symptoms (I work in the field; I've seen it). However, there are lots of people here who have no mental health issues, who know that something is wrong. In many cases, my own included, the docs freely admit SOMETHING'S medically wrong; they just don't know yet what to call it. I do not care whether  it is MS or not, only that I eventually know what I am up against. Most people here feel the same way. Many people here have been found not to have MS, but hang around coz we're a fun group of people who support each other regardless what is or is not "wrong" with us.

MS, as well as many of the mimcs and related conditions take a LONG time to definitively diagnose. We know that. Do we occasionally get frustrated with the process? You betcha - only natural. Does it mean that we are all somaticizing what we've read? Heck no, most of us never read until the potential diagnosis was brought up to us. Please do not assume that because you self-diagnosed symptoms that only occurred after you read about them, that this is the case with everyone. Your situation is your own; it is unfair to project it onto others.

Again, if I mistook your meaning, I apologize. I probably am coming in too strong, but I really feel that the post is a slight to the undiagnosed members of the forum. Please remember that the members who have diagnoses were in the same boat as the rest of us at one time or another, some for years. If you personally feel you need to leave the forum, that is your choice. Be well and God bless you.

Penn

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Maybe a break is what ya need,we all need them now and then.

What puzzles me is that your brain MRI is abnormal,but not MS related.Okay thats understanding as many disorders can effect the brain and show lesions.

I realize you have been to a few top notch facilities that house MS specialist.I'll be honest with ya ,I wouldn't trade my neuro for a handful of top notch ms specialist

My neuro has stuck with me when abnormalities were occurring and these ms specialtist would shuffle me through there doors like a cow going to market.I was just a clinical number and a paycheck.With no answers!!!!!!

A vep and a baer are only as good as the tech doing them.These are actually subjective test and can be miss read.These test are not exclusive to ms.They can aide in ruling out neurological disorders.Not everyone with ms have abnormal veps and baers.

Have I beleived everything a DR has told me heck no,if I did I'd have every neurological deficit there was.Its finding a neurologist and sticking with them through out the process.it has to be one your confident in and one you trust.Theres many out there that are medically practicing quacks.

Having a neurological disorder can take time to properly DX.Its a process of elimination and symptoms can appear without clinical evidence,it doesn't mean that a disease process isn't occuring.

Its a frustrating process and when ya get the news that a brain mri is abnormal it sets a person into a stressful panic mode,thats a natural process.There isn't one of us here that hasn't felt anxiety,depression,or a panic mode at one time or another.

No one here is saying that anyone has MS,when ask about a symptom many reply and can relate,its a support group, a cyber family for the diagnosed,the ones in limbo and the ones that have mimicers of MS.We are a group with mixed disorders,but always here for each other.

Can symptoms be somatic,maybe,but twitching is common in many neurological disorders and it can remit and relapse.Stress is and can bring out symptoms that can be hidden.

After you had the abnormal mri,you stated that you  dx'd yourself with ms.There had to be something on the mri report to bring you to this conclusion.

It took me 2 years of different specialist to get a proper Dx.I just had new MRI's the optical nerves were okay according to the radiologist,but seen neuro-opthamologist and the optic nerves were pallor on the outer edges.Either past ON or the starting of new ON.

Renee you have to do what ya need to do,but keep checking on the abnormal MRI,take some time and reflect.

T



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You stated that your MRI was similar to mine, why did you get yours?  I had one due to my symptoms of my rt. leg being heavy,and uncordinated as well as my rt. arm. Also, had rt. eye discomfort and severe fatigue.  I am not saying that I do have MS, and pray that I don't, but I know what my body feels like- especially compared to two years ago.  I've had a Dr. that thought it was depression/anxiety or possibly that I took drugs.  My neuro. has spent a total of 15 min. with me between two visits.  I don't know what is causing my problems but I believe being aware of all the possibilities is better than waiting for a doctor who doesn't always understand, it isn't their lives.  If you really believe that researching your own health is what is making you ill, then by all means listen to your doctor and I'll pray that they are right, for your sake.  TERESA
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Good luck sweetheart.  I totally understand why all of what you have read in the forum, makes you feel like you need to get away from it.  It can be awfully scary.

I hope you know, that I pray that you NEVER develop MS.  I hope that your anxiety and panic will be something you will learn to handle, as I did.  I suffered from it for over 20 years.  I know how bad it feels.  There IS help out there.  There is a way to be free of it...it took alot of work on my part and alot of changes in my life and lifestyle to overcome it.  You can too.

Take care of yourself.  I pray that you will be well and happy, so that you are able to enjoy all the wonderful things there are in life.  There is a great big world out there just begging to be explored.  

Heather
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*Teresa:
reason for mri, one day my eye felt strange did not hurt or blurry just felt strange, i went online and started reading about eye problems, then saw info on ON, i was the right age, sex etc, then read about the connection to MS, at that point i self diagnosised , went to eye dr he said he couldnt find anything with eye did a lot of tests, then i asked him for the mri, he wasn't even considering it, thus that is why i had an mri, because i asked for it

*monotreme:
those are some harsh words about Jeff Hospital. Its amazing you know first many people with MS i don't knoweally  anyone, and that they all went to Jeff and know they are all on disabilty after 2 years. I would be marching out front if that were the case and screaming to ever message board, websites, hosptals etc. Honestly i think that is a heavy statment, and realy not very nicely worded, a bit extreme. So if you think Jeff is **** and untrust worthly who do you recommend in the greater Philly area?

*listen i don't think everything dr's say is the final word, but there has to be a point where you say maybe 3 4 5  dr's have soemthing here, i mean lets be honest a neuro isn't gonna lose any sleep if i have MS, why wouldnt they tell me, its not gonna cause them anything grief. Dr's do take a code and if they dedicate there lives to school and education why would they all be careless?

The Jeff appointment was very thorough first dr spend over 1 hour with second  big guy keep asking me more questions and didn't want to leave until i had all mine answered, i couldn't even think of anymore questions to ask him, he hugged me wipped my tears and said try to be happy i wouldn't tell you a story.

*grannyhotwheels
i don't think "head case" is really pc these days, but call me what you will i really am a head case though i know many folks on this site are not, I have spend 2 weeks of psych hosptial due to anxiety so i guess i qualify as head case but i refer to it as someone living with anxiety not a crazy person

*listen who knows what could happen in 6 months or 10 years but i can't be a martyr for a disease i may not even have, i mean when do you say enoughs enough how may more dr's can i see, i am sure i could see 10 more and someone could find something negative to say about that dr or that facility. I just want to be healthy and happy like everyone on this site and stop with the negitive thinking there really is something to be said for that.

*a customer of mine had me speak briefly to an assoicate of his who has ms, she has had it for 6 yrs, i asked her if she ever went to an ms forms or websites, she laughred and said why bother i have a great life take my meds, lifes to short to sit on a website and ponder what if...i thought she had a really healthy outlook  

maybe i can help someone else who has an abormal mri and jumps to the conclusion of ms, then you panic and start up all these bosy syptomes, if you guys ever popped over to the anxiety website you would see people just like here talking about numbness, tingling werid body systomes too do they all have ms too. maybe some do but you can see why it is hard to differenticate between the two

cheers
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You were really hard on my friends, in your above post.  You make alot of good points and points well taken in the way you feel about anxiety/panic and everything NOT being MS.  You are absolutely right.  But please do not go after my friends.

Everybody here has only been trying to help you Renee.  No one that posted to this post meant to say anything to hurt you, although they might feel that you were slamming some of them.

I still hope that you never develop anything like MS.  Of course, I wish no one had to go through it.  But we cannot, on ANY forum, attack each other.  Ever!

Heather
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Sorry i sell cars for a living rough business, and have lots of brothers and sisters and live in a urban city...that's not even close to attacking where i come from, that's just normal lingo, ( honetly though if that was the case i was pretty attacked as well being a nut case, and being so "native" "as to believe dr's" all but i think thats no big deal i roll with the punches, ,
i mainly wanted to get back to ( teresa) because we kind of seem to be in a similar boat ie same mri results, please let me know if you have anymore questions about what my experiences thus far have been and keep me posted on yours
( maybe being a litle pushy and alittle of a smart *** , helps with dr's/ and appointemnts i definitly get every test when i want it, get appointments in a week or two week others wait months, sometimes you have to assert yourself to get the answers and respect, unfortuntaly those that demand attention and respect i feel will get that in return in the medical world
be strong i seriuosly even though you guys may think i am alittle rough have a massive heart and ache for you all in pain and confusion, believe me my next mri maybe a mess but today its not so on I go ......
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If you look at my post, I did not say "many people".  I said "people".  I have a close family friend who is on long term disability with MS who was ignored by the MS center.  My wife is a graduate of Jeff and worked there.  It has some excellent physicians.  However, since they have proclaimed themselves to be the neuroscience center for the city of Phila they have become overwhelmed with patients and are a bit callous in their care of patients.  It is pretty amazing that you could get an appt at the MS center at Jeff so soon.  I called them four times, left four messages, and never received a call back.

I have addressed my concerns about their lack of quality patient care with their patient relations dept and have filed a formal complaint.  Believe me I am not the only person who has filed a complaint with them.  And you can go to a MS support group and find out more people who may have slipped through the cracks at any medical center in Phila.  It is a big city and the med centers shuffle through thousands of patients a year.

When I called the neuro dept for an appt after being unable to get through to the MS Jeff center, and said it was for severe leg weakness and inability to lift my legs, I was given an appt  in the movement disorders clinic.  I can't move my legs, I do not have Parkinson"s.  then when I got to the appt the neuro (who was  Parkinson's doc,) wanted me to file a complaint.  However,I was given an appt with movement disorders because that was the only dept open.  And it was a  three month wait for the appt.

I have always made my complaints and dissatisfaction noted with the appropriate depts at Jeff.  My only suggestion to you is that you not treat them as they are the "experts" and correct.  Things may change down the road.  Learn your own body and get knowledge to help yourself.  You cannot only rely on a harried doctor or a rushed medical director of a neurological center at a major medical institution.
Craig
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I do not think of you as crazy and I'm sorry that it sounded that away.  All I want to know is why did you even come to the MS forum to begin with?  Was it to slam others, or do you feel like you have MS?  Just curious.

I'll be praying,
Carol
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oh know believe me grannyhotwheels i still think i might have ms , ( i contacted local ms chapter, talked on the phone to group letters, got tons of info from ms websites etc local group didn't want much to do with me withour diagnosis) but i really got to chill out and hold my fire, so many different dr's from opt-neuro's to couple different neuro's 2 seperate friends whom are dr's basically every ave thus far doesn't take me to a ms result, ( i am not complaining either)
i do have ocd so it is really hard for me to determine what could be a real event or my thoughts getting the best of me, i also came here to help people like me that yet an abormal mri result back freak out want to die get so depressed, when i could be fine those people do visit the forum and i wanted them to have a reference that wasn't scary or always bad

yeah monotreme, i called jeff ms department said i had abnormal mri and wanted second opinion had app scheduled in less then 2 weeks, maybe they are trying to improve? but you do seem very knowledgable are there any places in philly you trust or approve of or had a experience you felt was thorough and accurate?
"Learn your own body and get knowledge to help yourself.  You cannot only rely on a harried doctor or a rushed medical director of a neurological center at a major medical institution"-then who do you seek guidence from where do you get knowledge that you trust, i don't what to become a conspiricacy theory person, im already looney enough, ha!


my question to you is others is why is everyone so resillent to take a "not ms diagnosis", if you didn't really have any systoms besides some tiny white foci in non-ms consist areas of the brain and saw like 3 dr's would you still keep at it? why ?
(of course i will still re-mri in 6-12 months)



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Hi!  Just jumping in here with my rendition of why alot of us are "resilient to take a "not MS" diagnosis".  I think I speak for quite a few here when I say we are absolutely not looking for a diagnosis of MS,  BUT we are having life changing symptoms that we cannot ignore and we need to understand what it is, if not MS.

For example:  Six months ago I could mow my lawn, trim the hedges and pull the weeds and feel good when I was done.  Now, I cannot do any of that without feeling extremely shakey (shaky), weak, my vision gets blurry and I need to lay down.  These are physical responses to something going on in my body and I need to understand why this is happening so I can find a remedy or just learn to live with it, either way I need to know.  Does that make sense?

Just like when the doctor said it may be anxiety for you causing your symptoms, a light went off in your head and you wanted to come here and help others maybe find out that this too could be their problem.  Most of us that have been here long enough have been this route and have tested the whole scenario of take time away, read nothing, talk to no one and see what happens, unfortunately the ones that come back still had symptoms or had relapses that caused them to start searching for answers again.  Anyways that is where I am, just looking for any answer that makes sense to me.

Take care!
Kristin  
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After reading everything this was real mind boogling at first.

Renee,if I could take the its not MS road yee-haa,I'd be on the first horse out of town throwing my rebif injects out on the way.

I seen 5 neuro's as my body was deteriating fast and with no answers.I had to have answers for my own sanity!!!!!!!

If it was as simple as anxiety or depression,that would of been alot easier then the shots and the 5 daily meds I take to start my morning.

Not everything is black and white,not everything shows up on a MRI,we all know our bodies and for the ones undiagnosed,they want and need answers.

If you choose take the wait and see approach thats great,many here have,I was one included,but many have reoccurring symptoms or symptoms they aren't getting and releif from.They, all us need answers.

As you stated you had an abnormal MRI and problems with an eye,something to keep an eye on,but others here are losing there ability to walk,suffering from balance disorders,the list can go on forever.
They need to find the medical etoligy and until then they(we) are finding great support and solitude from this forum.

Not ever medical facility is for everyone,one that works for me may not work for another.

For all that aren't diagnosed keep the fight alive.

T
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    Being someone who is new to this site and new to the "possible MS" catagory, as I am undiagnosed, I would like to explain to you how this site and the MS forums have helped me tremendously. I am the type of person who wants answers and wants them not not months from now, but YESTERDAY!!! or at the least TODAY!!! Being able to read the experiences of others has given me the patience to persue the answers I am looking for and to control the frustrations I feel when I don't get the answers immediately. I realize from reading everything on here that this is something that takes time, possibly years to diagnose.
     Also, with all my symptoms being "invisible" to others, I am dealing with family members and a fiance who can't see what I am going thru. They know something is wrong since I am not someone who complains or is sickly, but they still have a hard time "seeing" what is happening with me. On this forum I have found others who can relate to what I am experiencing and that helps me to deal with the most important people in my life.
     I may not have MS, and I hope and pray that I don't. But I also don't think its just coincidence that 4 different doctors have mentioned the possibility with no communication between them. Therefore, until I get a definant diagnoses, this is where I will remain. It's comforting to me to have people that can relate to what I am going thru, what I feel, and who I can talk with!!! Even though I can't give anyone else advise as I am not qualified to do so!!!
     The one thing that does NOT surprise me is that tempers flaired in this particular post. That some people would take what you said as "harsh words" and replied back with "harsh words". Maybe we can all keep in mind that we are individuals with individual symptoms and diagnosises, and as much alike as we all are....we are also very different. No matter what diagnosis you may have or I might eventually recieve, this forum is just here for information purposes!!!!

I wish you all the luck!!!!
          LIsa
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Jerry Springer's people just called and they want to know if we can all appear on an upcoming show entitled "Your MS really pisses me off!"  

Just kidding.  Just trying to break the tension here a little bit....

Chris
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Yes, I think most of us want answers.  LIke I know something happened to me 6 months ago and my drs thought I had a stroke.  I dont know what happend Im still having symptoms and feel the same.  We just want to know ok what is it then?????????????????  We are getting tired of some neuro who dont give a damn about you.  Or just a regular everyday doctor saying no, I dont think you have ms you are not peeing your pants. Sorry, venting, nette573
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Is he paying for air-fare and the hotel rooms----I need a vacation.

T
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Can I please be the special suprise guest - I have a tube top and some minishorts with stripper heels all picked out!!

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This post seems to get so many people upset.  Maybe it's time to let this post fall back to pages 2, 3, 4 and so on and let's go forward with our fight, regardless if others feel that we are wasting our time by pursuing our symptoms.  

Of course I am already diagnosed, but it wasn't an easy path getting there.  If it wasn't for my fighting for answers because of an idiot Neuro in my life, I never would have found the answers and the treatment that I needed.  I for one, am not going to wait, while my brain is destroyed by something I have 'some' control over.  MS medication therapy's.  So for those not diagnosed, I hope that you will continue your fight.  You know your bodies better than anyone.

For those who don't think we are right for fighting for the truth and answers, than I wish them well in their fight, for whatever that is.  But this is one post that needs to fall by the wayside as they say and disappear into history for now.

What do you think?

Heather
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I love these forums; everyone supports each other and I too came away upset that Renee attacked other wonderful members of the forum.  This is a safe place for sharing, not nit picking and stabbing back and forth.  We share our experiences, knowing that we are not dxing just sharing.

There is no easy rd to MS dx and even then I have had friends with definite MS walk away from docs in ER's after being told "its all in their head" when they are clutching MRI films in their hands.....so to Renee, even getting a dx will not guarantee you that every neuro or md will agree with it, leaving you crusading against everyone you encounter.

Follow your heart but don't lash out at people trying to befriend you....
I wish you the best as we all do
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Sarah thanks for caring this post is 4 years old.

Alex
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I know this is an oldie,and I really wasn't going to comment but felt that I have an obligation since all of us limbolanders seem to get a bad wrap from someone, somewhere, at some point in time. Breathe.....I had my own business and physically worked hard, after years of sx my employee suggested ms!  I had to go to a new dr (I just explained my symptoms) and he suggested ms or brain tumor.  I had to wait a month to get an mri, so of course I started looking it up and found this site.  That was when I started to see that I was experiencing more sx that I just passed off as strange etc.  I had the mri and it showed 4 lesions.  

I'm still not diagnosed, but I had these symptoms BEFORE visiting this site, and without the help and support of the members, I would have felt pretty alone while waiting.  To me it's not bad enough that our dr's, and maybe some friends and/or family doubt our illness, we then have to get it here?  Shame shame....you can blame yourself if you let the words on this site project a false diagnosis.  I still don't say that I have ms, I say it's a strong possibility but I'm open minded.

This is for all of the members who only try to help,  you are greatly appreciated!
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I appreciate your comment.

Limboland is hard I was there a long time mostly without any aid or understanding. I had my first Neurological attack in 1965 and was found to have damage to the brain stem. I saw Neurologists until 2009 when I was finally diagnosed with MS. I have Primary Progressive MS so I have never had a remission just a slow progression of added symptoms.


Unfortunately we are only human on the forum and the internet is a passive form of communication. Things get lost in translation many times. You can't look at them and ask a question right away or watch body language. People put out symptoms or questions or statements and may be present it in a way that may or may not sound like MS. People get their feeling hurt quickly in such situations.

Each post about any subject is interpreted differently by everyone who reads it because we have different experiences. We even feel differently on different days. Some of us also do not read well or have cognitive issues.

I for example years ago I presented my symptoms on the forum and was told I flat out did not have MS. I did not take it personally.

Think of it we know practically nothing about a person who comes on here.

We are not medical experts, we are experts in our own diseases and everyone is different.

Also so many people come and go it is hard to keep all the people straight.

Alex




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