It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Brain Tumors Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 09-09-2009, 06:44 PM   #1
Newbie
(female)
 
Join Date: Feb 2009
Posts: 6
JRock123 HB User
Exclamation Please take time to read this, I need some guidance! LONG!

Hey all,

I posted a thread for the 1st time after lurking forever about some symptoms I have been having. Long list short:

Headaches over right eye only
Eye pain/pressure
Vertigo with R eye movement
Nausea
Tripping on flat surfaces
Stuturring at at times
Corset like band around waist
Shocking pains
Really heavy feeling limbs

My PCP sent me to neuro and wrote R/O MS on my referral sheet. My appt was supposed to be tomorrow but Monday when I went to work I was not feeling well, I am a EMT at a county jail, I leaned over to put my lunch in fridge and got instantly dizzy, and fell over to the left against a concrete wall. I was clammy, dizzy, bad headache, blurred vision. My coworker did some vitals on my and my BP was 98/64 and HR 144. The doctor I work with said for them to do a EKG which they did and was abnormal showing a block. They sent me to ER, a coworker carried me over there. When I told the ER nurse and ER doctor they were very rude and stated that the ER is not a place for a neuro consult????? Since when is the above symptoms not place for the ER? They told my my vital signs were like this because I was in pain. Treated me with some pain meds. Told me I was "hysterical". I will never take my dog to this ER let alone myself. Low and behold shift change in comes new doc and the new doc admits me, the EKG they ran showed the same block so they did full cardiac workup which I was told was normal, even though the nurse showed me the ABNORMAL ekg. Then did MRI with and without contrast and a CT said it showed nothing. They just let me go today with a order to follow up with neuro that saw me for a PCG test I think it is called in 2 weeks.

While I was in the hospital a nurse came in while I was half asleep proceeded to lift up my gown and go to give me a shot in the belly, I said hold on what is that, and she told me a blood thinner, I asked her why she was giving me that, she replied she did not know the doc had ordered it.

I was "diagnosed" with migraines, and was told I need to see an opthamologist for a possibility of a pseuso tumor. All of this makes no sense to me, the doctor was so vague. Why the blood thinner if no problem, why the EKG was abnormal that I saw and the one at my office. Why all these neuro symptoms and because MRI showed nothing per doctor, it is not neuro related?

What do you all think of this, I want a 2nd opinion, after I get all the medical records from this visit. Does anyone know a good neuro or one that specializes in MS around Atlanta GA? My mother had MS and it started with all these symptoms!

Sorry so long as I guess this was a rant as well....Please your thoughts?

EMT Jenn

 
Sponsors Lightbulb
   
Old 09-09-2009, 07:45 PM   #2
Newbie
(female)
 
Join Date: Sep 2009
Location: Ninety
Posts: 1
ketty53 HB User
Re: Please take time to read this, I need some guidance! LONG!

Why hasn't anybody tried to help this lady? I think you can go online and a MS specialist around Atlanta. It would be worth a try. Good luck and God Bless.

 
Old 09-09-2009, 07:54 PM   #3
Newbie
(female)
 
Join Date: Feb 2009
Posts: 6
JRock123 HB User
Re: Please take time to read this, I need some guidance! LONG!

Thanks for a point in the right direction, I need it. I am confused, scared and hurting

I appreciate your time in answering...


Hugs.
EMT Jenn

 
Old 09-10-2009, 07:20 AM   #4
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,892
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Please take time to read this, I need some guidance! LONG!

Im going to throw in my two cents here and take a guess at why no one posted sooner.
First of all, if no one knew anyone in Atlanta area, then they wouldnt have responded with that answer. Secondly, if you still havent found a doctor in the area (and I would think you would be able to get a name, being that you are an EMT in the area) then you can talk to your primary care doctor and ask for a referral...
And most importantly, having read your post several times, there is much info that isnt making sense. And, as an EMT you SHOULD be questioning it.

THe symptoms you are describing do NOT sound like MS symtoms. Sorry, I know you said your mother had MS, but again, its not contagious, its not inherited and that doesnt mean you are going to get it too. THe dizziness, and eye issues are the only thing that remotely sounds like it could be MS related..the symtoms of optical Neuritis, inflammation of the optic nerve, can do what you describe. This can be, but isnt always, a symptom of MS. My brother has ON and does not have MS. I have had ON three times, but I also have 50 lesions on my brain and all the other symtoms which accompany MS.

The fact that your MRI and CT scan showed nothing- rules out MS at the moment, but they can change month to month and having them repeated in a few months is probably a good idea.

The fact that you were given a blood thinner and do not know why- makes no sense at all, and you should have refused it until someone explained to you why they were giving it to you. The fact that you state the workup was normal, but you also state the EKG wasnt....also, doesnt make sense. A nurse cant tell you if its normal or not. You cant make that distinction. Its a shame, but even those of us in healthcare, arent capable of reading our own reports or diagnosing ourselves. At this point, if you trust your primary doctor, Id ask him or her, to get copies of the results from the hospital (and yes, legally, you can request copies of your chart) and have him read it, interpret it and explain it to you.

Im not clear if you went to that Neuro or not to rule out MS...but whether you did, or didnt- without having any of the mcDonald criteria at the moment (the MRIs, the lesions) I can pretty much guess that no one is leaning towards a MS diagnosis at this time.

A good opthamologist would be a good place to start. A Neuro-Opthamologist is hard to come by, but they do exist, and they are excellent sources for ON info as well as being able to do tests that a regular Opthamologist cant perform right in their offices. Tumors, Migranes, Optical Neuritis, things of that nature, are usually found by a Neuro-Opthamologist. Since you seem to think your EKG wasnt right...a follow up with a cardiologist might be ideal..and of course, having a primary care doc who can coordinate all of this, would be beneficial.

You had a bad experience, and for that Im really sorry. There is nothing worse then feeling "dismissed" when you are scared or in pain. But as you know, your vitals werent that terrible...and both anxiety and pain would have raised your HR. Your bp was actually where mine is every day of my life, and its considered low and healthy. But the end result of this, is that you have to be your own advocate for health care. I dont see that this hospital did anythign wrong- allot of tests were done, including neurological ones, and nothing came back showing anything...stess, and anxiety seemed to have played a huge part in this day for you...now, its time to find someone to re-read those tests, suggest additional ones and start following up with you. It can take years and years to get a MS diagnosis, but a whole lot less time to rule out ON, or other neuological diseases...a good blood panel is necessary, possibly a LP- to rule out infections...but right now, Id say RELAX and try NOT to think about this every minute of every day because its not going to help....find a good primary doc, who can help you and best of luck to you.
Nikki
__________________
RRMS- dx 05

 
Old 09-10-2009, 07:23 AM   #5
Junior Member
(female)
 
Join Date: Aug 2009
Location: Massachusetts
Posts: 19
vwick77 HB User
Re: Please take time to read this, I need some guidance! LONG!

Make sure you get all your records and bring them with you to a Neurologist! You were treated so wrong and that is not right. I am sorry you are going through such a hard time. I have been going through 3 years with the possibility of MS and had paralasis happen in my leg last month and looked up a MS specialist in or around my area. Found a wonderful place in Boston and I recommend you do the same. Become your own advocate and get yourself the best care. Only you know what is going on and don't stop until you get answers! Take care of yourself Val

 
Old 09-10-2009, 04:52 PM   #6
Newbie
(female)
 
Join Date: Feb 2009
Posts: 6
JRock123 HB User
Re: Please take time to read this, I need some guidance! LONG!

Wow MS Nik-

You were very rude, I hope this is not what this board is about...truly. I was shown my EKG in the ER and what it said in the top right corner, didn't know if you knew they read out the problem. 2nd I came here for a referral as there are all types of neuro's ones that specialize in MS are hard to find. Me being an EMT doesn't mean I have all the answers and DO NOT think I can diagnose myself. My PCP is the one that referred me to a neuro and wrote R/O MS I did not come up with that on my own. In fact he says several of my symptoms are MS symptoms...Tripping, suttering, corset like pain, rapid jerky movements, shocking pains...I am sure since you are an expert you know this. I took the shot the nurse brought in because I was trusting of MD's and if they thought I needed that then I wasn't going to refuse at 2am.

Your post is very condesending and rude and I hope your disease hasn't made you such a cynical person. I only came here looking for help and to those who gave me such good advice and uplifting words I appreciate it.....You however need to learn how to talk to people!

BTW-I am sure you already knew this but you can have MS with a negative MRI, just FYI

 
Old 09-10-2009, 05:39 PM   #7
Newbie
(female)
 
Join Date: Sep 2009
Location: Pittsburgh, PA
Posts: 9
katsie2 HB User
Re: Please take time to read this, I need some guidance! LONG!

I just began reading this post. My dad had MS, and died sixteen years later, when his head began to bend backwards,...it was sad, and he was unusual because he lived so long.

I just discovered that MS can be inherited!!!!!!!!!! All the time, during my dad's illness, and afterwards, I would ask my doctors if MS was inherited? They all said no. Today,..now, I found out that it can be inherited. SEE A SPECIALIST!!!!

 
Old 09-10-2009, 05:43 PM   #8
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,892
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Please take time to read this, I need some guidance! LONG!

JRock,
First, I apologize to you. I have posted thousands of times on message boards and used the same type of language and have been thanked so many times for my advice. I obviously offended you and for that, I am deeply sorry.

I am not cynical by nature and in fact am working in Hospice. Id rather not go into the particulars of my position, but I assure you, compassion is my middle name! I deal with worse case scenarios every day of my life- see both patients and families in crisis and the only thing which I have learned is EXPLORE EVERY AVENUE and ALWAYS ASK FOR CLARIFICATION WHEN ITS NEEDED.
That, is advice I give everyone. Doctors these days, will prescribe or do- whatever it is they think they have to do, both without explaining why, or giving reason. Thats why I said to you, why didnt you refuse the medication? You are the one who questioned it, didnt get a straight answer and then made it a point to post it. I felt (wrongly and I again apologize) that you were venting- and simply pointed out that you could have refused the shot if you werent satisfied with the answer you got.

I do apologize to you. I have found this board to be wonderful and hope that you have just as great an experinece on it as I, and many others have had. Please forgive my tone, as it was most obviously misunderstood. I only wanted to respond to your need for information. You should also read up on the updated (2008) McDonald criteria for more on the required facts in order for a neuro to diagnos MS. It will help you to better understand why I said that without any indictation on the MRI, the dx wont stick..Lesions are a very important part of the criteria. However, Ill be the first to admit, what doesnt appear today, might very well appear tomorrow. Not having them "that time" doesnt rule out the fact that they may be there, but too tiny to see at this time.

Again, my apologies to you. I am quite upset that you felt the way you did when you read my post back. It was not my intent to upset you.
Nikki
__________________
RRMS- dx 05

Last edited by MSNik; 09-10-2009 at 05:44 PM.

 
Old 09-10-2009, 05:55 PM   #9
Newbie
(female)
 
Join Date: Sep 2009
Location: Pittsburgh, PA
Posts: 9
katsie2 HB User
Thumbs up Re: Please take time to read this, I need some guidance! LONG!

As I said, my dad had MS. The effects began showing when I was 15,...he was 42 yrs. old.

What we could all see was that he was dizzy. He complained about it all the time, plus he had tingling in his right hand. He was exhausted too,..never before the symptoms started. He could not walk without holding onto something.

Back then, almost thirty years ago, the doctors did not know how to treat him, they weren't even sure it was MS. One specialist said he had a brain tumor, and did 'exploratory' surgery to find it. After the surgery, on his neck and lower portion of his head, he could not move. He was only able to turn his head for the remainder of his life! We tried to sue, but that is another story, that did not turn out well.

Anyway, he was finally diagnosed with MS, but they had nothing to give him then, except to treat the pain, which was not the greatest stuff. Today, they have better drugs, and doctors who recognize MS.

I have a myriad of health problems, and was always concerned about getting MS. I had horrible migraines for twenty years, which got worse, and culminated in a migraine a day for five years. I was working then, and could hardly get through a day. Then, I started to get dizzy. You can say I was scared! I remembered what happened to my dad.

My arthritis doctor told me, five years ago, that MS can be inherited. I almost fainted! Believe me, up until then, all of the doctors I asked, told me no way it could be inherited,..well, now they changed their minds.

It turned out that I have fibromyalgia, Sjogren's syndrome (connective tissue disorder), Raynauds, chronic fatigue,...and the dizziness, and migraines were hormonally related, because I developed breast (hormonally driven) twice.

I went to an arthritis doctor for confirmation of the above, but I also saw a neurologist, and others, and they found nothing, until I asked my general physician to test me for lupus. It came back positive, and the arthritis doctor confirmed the above conditions.

It is sad when we have to diagnosis ourselves!

I now go to a pain clinic, for the duragesic patch, and a med for break-through pain, but the migraines have stopped because I am past menopause.

Have your blood tested for lupus, have your hormone levels tested via blood tests, not saliva tests, and go to a big city hospital. I live in the suburbs, and none of the doctors even guessed that I should be tested for lupus, even though I was the right age, and was presenting with all of the symptoms!!!!!

Don't give up! Go to the specialists, go to the large clinics like the Mayo, Johns Hopkins, etc., do what you have to do, but do not give up! If you are like me, you cannot live the way you are living, and it is NOT in your head! I actually had a doctor (g.p.) tell me that I was menopausal, and it was all in my head!!!!! NOT! I called him, after I got my diagnosis, and rubbed his nose in it!

Good luck!

 
Old 09-10-2009, 08:53 PM   #10
Senior Veteran
(female)
 
Join Date: Mar 2007
Location: USA
Posts: 968
goldyfm HB Usergoldyfm HB Usergoldyfm HB User
Re: Please take time to read this, I need some guidance! LONG!

Katise, I agree wholeheartedly that a lupus check is warranted. I began my long Journey for answers witha request for a MS workup. * Disallowed subject removed by hb-mod, moderator *
Luckily, that was negative, but I was diagnosed with Fibromyalgia. One can follow my long quest for a diagnosis and treatment on this board. I later saw a new Rheumie who actually discovered the lupus. I also have valve issues now, which I suspect is a result of the untreated lupus. I am on meds for lupus now and even the FMS symptoms are much better overall. I know that in finding my Rheumatologist, I called and asked what the doctors in that practice specialized in, until I found one that I thought could help.

Many of the neuro like symptoms are seen both in Fibromyalgia and lupus. Also 60-70% of those with FMS also have lupus.

Last edited by hb-mod; 09-12-2009 at 08:31 PM.

 
Old 09-10-2009, 09:12 PM   #11
Newbie
(female)
 
Join Date: Feb 2009
Posts: 6
JRock123 HB User
Re: Please take time to read this, I need some guidance! LONG!

I have been diagnosed with Fibro since last year, so I know that is some of my problems I have. I appreciate the compassion and good advice. I do not have to go back to work until MOnday so I am going to research a good doctor in Atlanta, I would like to find a good website for reviews of doctors. MS Nik, apology accepted, I am glad you work in hospice, when my father was dying those people were my lifeline to sanity, God bless you for that!

Hugs,
EMT Jenn

 
Old 09-11-2009, 04:53 AM   #12
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,892
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Please take time to read this, I need some guidance! LONG!

Thanks Jenn. Appreciate you accepting my apology. I hope you feel better soon and find the right doctor for you. Atlanta, being as large a metro area as it is, should have some sort of help available thru the dept of health- maybe? Give them a look into....
again, sorry. and thanks.
Nikki
__________________
RRMS- dx 05

 
Old 09-11-2009, 02:32 PM   #13
Newbie
(female)
 
Join Date: Sep 2009
Location: Pittsburgh, PA
Posts: 9
katsie2 HB User
Re: Please take time to read this, I need some guidance! LONG!

Thanks for your reply goldyfm!

You know, it has always bothered me that my lupus test came back positive, yet the Rhumy doctor told me that it was fibro, not lupus.

When I had my son, 28 yrs. ago, I remembered this about a month ago,...my brain cells are dying,..hehe. Anyway, when I delivered him, by c-section, first child,...I had this horrible patchy rash all over my body, except not on face, hands, or feet. I had to wear a long robe so nobody could see how gross it was, and the hospital was so freaked out by it, because they did not know what it was, they moved me to Isolation!

How weird I just remembered that. I now wonder, if I had told the Rhumy doctor that, if he would have diagnosed, and treated me for lupus??? I think I should try to find a Rhumy doctor, and let him know about this.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Arthroscopy procedure PLEASE HELP! yoga gal TMJ Disorder -TemporoMandibular Joint 75 02-25-2011 05:18 AM
Help please.... deb53 Chronic Pain 11 09-20-2009 04:07 PM
Please Read and Help...Thanks sue405 Bipolar Disorder 4 08-17-2007 11:01 PM
Omega 3 guidance please.... rugratzmommy ADD / ADHD 9 02-18-2006 02:03 AM
I'm in love with my married high school guidance counselor...advice PLEASE. frozeninside Relationship Health 7 06-09-2005 04:29 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 06:14 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!