Aa
Aa
A
A
A
Close
Avatar universal

Helppppp! I do not have ms or anything else.

My name is David and I am in Kentucky.  About 10 years ago I had a short episode with pain in my eyes which seems almost constant where the vision went blurry for a few minutes.  Doctor diagnosed it as "optical migraine".  Over the years I have had episodes of what I now know to be vertigo and went to the hospital but because I suffer from panic disorder they just kind of all act like they think anything they cannot immediately see in preliminary tests is imagined.  I do have panic disorder.  I have never been accused of being a hypochondriac.  In the last 2 years I started waking up in the middle of the night very early in the night having to go pee but then pee'd very little and cannot go back to sleep.  I have had a bad increase in dizziness and confusion that does not seem to respond to my medication for panic disorder.  But I really thought it was just really bad panic attacks despite the other panic attack symptoms were not there.  And the doctor passed off the urinating at night because I am a 46 year old male.  I have had in the last several years an increase in clumsiness but just sort of passed it off, you know bumping in to doors, tripping on the steps, losing my balance and falling and I have had a weird sort of confusion that never seems to go away.  The confusion seems to be where I am talking or typing and suddenly words that I know very well just will not come to me....... like "toaster" or words that are related to my job that I see every day.  I have been forgetting over and over what my passwords are to get into my computer system at work, what my employee number is and all kinds of things.  My partner has to tell me words all the time cause I just cannot remember them, common words and I have to describe them in order to be told the word.  I am forgetting how to spell things that I know very well how to spell, my fingers are clumsy when typing, my typing speed is going way down and I find I spend half the time hitting backspace to correct errors and sometimes cannot remember a word at all and have to use another word instead.  In addition to these I also found out at the neurologists office when sent that I cannot stand for long with my eyes closed and cannot pass a field sobriety test.  So I was sitting on the couch one Saturday morning on the laptop very early in the morning before anybody else was awake and I noticed the computer screen going blurry.  Then I got up to go get a cup of coffee and suddenly it felt like the floor had dropped out from under me and my hand felt like I was going to drop the coffee cup and I attempted to sit it on the dining room table 3 times before my double vision did not trick me into almost dropping it.  I felt my way back along the wall to the sofa and laid down.  I felt sort of partially paralyzed or something.  I could not walk anywhere in the house to wake anybody else. I picked up the phone and the battery was dead.  I thought about trying to crawl to the antique telephone in the living room but decided if I made it there I could not dial it with putting my fingers in the number holes and turning it.   So I laid on the couch for 2 hours and when others woke up I talked like a drunk with speech slurring.  They called an ambulance and I could not even put on my own clothes.  But by the time the ambulance had me half way to the hospital I could talk better already.  I suffered from double vision and difficulty walking for about another 8 hours after this.  I was taken to the hospital and they checked me for stroke and heart attack and quickly released me.  I was released and spent the day in bed.  The next morning I felt fine.  On the following Monday I went to my family doctor and for some reason he decided I needed to be tested for some disease called MS.  I went through all the tests, evoked potentials, lumbar puncture, MRI with contrast and without and the Neurologist who was absolutely sure I had ms suddenly changed his mind and told me after he got all the tests back that I was tested for a variety of illnesses and I do not have any problems and I do not have MS and that maybe I should see a psychiatrist rather than my family doctor to treat my panic disorder and I might not be getting the proper care.  So I have had tests on everything from my arteries to my brain and spinal fluid and I have no other problems and I have not had a stroke and I do not have ms.  This jerk without even knowing me has just assumed all my symptoms are psychological when he has seen in his office that I cannot pass a field sobriety test?  And a lady on facebook I know with ms has said I should ask for my records from him and ask for the full reading of the mri not just the "impression" but the only thing in my records is the "impression" which tells me he has not even read the mri.  So tell me after I have written my entire story.  Am I suddenly a hypochondriac when I have never imagined illness in the past and my doctor is the one who brought it up to begin with?  I am walking so poorly when I stand for a while that I almost fell last weekend and stomped on a bunch of flowers at a museum tour of a historic home.  Yeah I guess I did that for show.  It embarrassed the living crap out of me.  I am getting extremely frustrated and do not know what to do next.  Do I just wait?  I don't know what to do.  HELPPPPPPPP.  
32 Responses
Sort by: Helpful Oldest Newest
Avatar universal
    hello i am new here as well, i noticed the suggestion of TIA and wonder if any suggestions were made to help test that theory from your doc? my father has TIA and while yes some of what you have going on reminds me of what he goes through. i had to skim alot of places due to DV. but i can give you a suggestion that may or may not help in the meantime. if you do try this though keep searching for an answer. i am not a dr.

    with dad we found his attacks were triggered by MSG that all too common food preservative. now you would have to look into all the names we have found it too be listed in at least 4 names, of which i forget the other 3 atm. eliminating this from his diet helped him tremendously, although i have no idea if there is any medical evidence to support this or where he got the suggestion to try it from.

     we can tell you for a fact that with him if he says oh just a smiggen will be fine when we tell him that contains MSG, it often, but not always triggers a mild TIA. of course as a result we make certain family gatherings are safe foods only for him, so he "smiggen" all he wants (i hear his chuckle).

     for him it reminds us of sugar to a diabetic.  just something i thought i would throw out there to perhaps try to hopefully make you a bit more comfortable till you get a more deff DX. and yes i realize what am saying...reading all those labels with DV...can be very frustrating.

       hope you feel better soon,
        hugs!!
Helpful - 0
3054080 tn?1358722856
I so understand about the stigma associated with a history of anxiety. Twelve years ago I went through a divorce, job change, moving twice, and problems with my then teenaged daughter, all in the same year. I saw a counselor and was put on an anti anxiety med.

Now it is in my history, even though everything other than my health issues is going well. Thankfully (strange to say) my current neurologist believes something is going on and I have test results to back it up, just not enough yet for an actual diagnosis.

Five years ago, I had severe pain in my neck and my pcp attributed it to stress. I knew something was wrong, and after finally getting a referral, it was discovered my neck was a hot mess. I followed my treatment plan religiously and was doing very well until a few months ago, when my symptoms become more neurological in nature.

I think sometimes doctors look at your history and not you as a person and come to a preconceived notion. It is very hard to get past that.

Best of luck, OP, and I do hope you are taken seriously and can at least get the road toward finding out what's wrong.

Hugs,
Minnie :)  
Helpful - 0
Avatar universal
I think I need YOUR family doctor :-)
Helpful - 0
Avatar universal
Comments and information are what I want.  And I know it is really crappy when somebody asks for advice and then refuses to do what is advised.  I just spent years seeing psychiatrists and hated every one of them and finally said to hell with it.

  I have the best family doctor in town, he understands my illness and told me he can treat it successfuly and explained to me what he would do differently before I fired the last shrink.  And I fired the shrink, let the family doc treat it and other than a manic break every spring and every fall that I have always had and are short lived he has treated it far better than any shrink ever has.  And I just an unwilling to see a psychiatrist now for my care.

I may see a therapist for counseling, but not a psychiatrist to replace my treating physician.    I might ask my doctor if he can write something in my file to determine if he thinks I do or do not have hypochondria but I just am not willing to play dice with my mental health care because that can cause huge problems that I do not want.  
Helpful - 0
Avatar universal
we didn't mean to hog your post, David!

it's just the way we are here, one big happy family and sometimes more information than you want!

I truly understand where you are coming from, having seen the "shady side" of health care professionals and listening to them in the ER
Helpful - 0
Avatar universal
JJ,
There was no offense taken I promise.  I was simply explaining that when I have seen shrinks in the past they seemed to totally have no regard for my  mental health and seemed to have other motives.  The last one took me off drugs that worked and put me on drugs that did not on my first visit.  I just do not trust them.  

I completely understand what you were making as a friendly helpful suggestion and I was not debating you.  I was simply explaining why those doctors scare me.  I do not want to go through a horrible depression or manic period just because some quack thinks I should be on some new expensive drug.  I promise I took no offense.  And I understood your reasons for making the suggestion.  Hugs.

David
Helpful - 0
Avatar universal
What an interesting conversation- I know it's incredibly frustrating to feel as though you are being dismissed by doctors and that your symptoms are somehow in your head. I know I have been there.

Of course, I will face the stigma too, having a dad with bipolar and being a person who has been on antidepressants over the years. Coincidentally, I did my work in therapy and beat an eating disorder and left an unhealthy marriage. I'm so freakin' emotionally well balanced it's just not even funny! :)   And I would give anything to have my body cooperate now, so I could just enjoy my life!

I think it's true that it's probably just the way it is that a person will be "required" to rule out emotional/psychological issues for a diagnosis.

It's so good to have each other here to "talk to" though. I think it helps a lot.
Helpful - 0
1710955 tn?1309446473
That's just it.  It's a stigma, that's all. I have experience with alcoholism and bipolar disorder too.  I'm not looking to get into an argument of any kind, or to upset David in any way since he's so strongly opposed, but for an alcoholic, whose bipolar and has a severe panic disorder whom now is facing the possibility of a chronic disease needs some sort of professional counselling period. I don't care if you're gay, straight, black or white it's an obvious direction.

JJ is so right too.  Anybody who has been to a doc and have been told sx's are all in their head need to get that ruled out.  The only way that can be done is by seeing a "shrink"!
Helpful - 0
Avatar universal
JJ
sometimes in the states, the mention of having gone to a shrink in your records is a kiss of death, a stigma that never goes away regardless of the outcome, its like having a wrong diagnosis and no one will remove it!

that and those d....g people are sooooo expensive and want to drag you on for YEARS before saying yea or nay.......

but you make a good point!

Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
I was NOT in any way shape or size saying, implying or even thinking you should see a psych because it was all in your head, hypochondria, psychosomatic or your already dxd mental health issues!

My point was simply, that by getting your mental health assessed for possible causation, you would probably end up having a little peice of paper (diagnostic evidence) stating you'd been fully assessed and in their professional opinion, the sx's you are experiencing are not psychological but physiological and require further investingation.

There is a high proportion of people who end up dx with MS, who have had to get their mental health assessed along the diagnostic journey and have gotten that peice of paper! I had to, not because i've ever had a mental health issue or sx's of but because of my mother and brother's mental health issues, logic not and it su_cked big time, though i do love my peice of paper :o)  

I am sorry for your experiences unfortunately its a common story! Look my mum has bipolar and my brother is still an alcoholic and has peripheral neuropathy from pickling his brain for 30 yrs and on top of that he also has Asperger's, seriously I GET IT! You and I could probably debate psychiatry and mental health drugs untill the cows come home, but that isn't the point. btw I am not a particular fan of either to be honest but an issue you still have regardless of your feelings, is that your mental health is being blamed for what you are experiencing now.

The recommedation on getting assessed was not to get medications or therapy, thats your choice to do or not do, it was as i said "to get that turkey off the table" To be perfectly frank, I dont understand why anyone would choose not to find out, to know for sure that mental health as the cause isn't the right dx, if its not, it gets that theory off the table and under the circumstances its pretty important diagnostic evidence!  

Your choice is to face it head on or continue to avoid it on prinicpal, and what ever the out come, be comfortable with all the desicions you make.

Cheers..........JJ

ps cheers in Australia is a friendly bye bye :D
Helpful - 0
Avatar universal
I thought they made them stop the big bribe thingy?

I know when I was still in ER nursing, they made them stop doing it for us (darn it, I liked the lunches! ha ha

I'm with you, David, never trust a psychiatrist!  Especially with MS
Helpful - 0
Avatar universal
So sorry I wrote with no paragraphs again.  I was trying not to do that.  Sorry if people had trouble reading.  
Helpful - 0
Avatar universal
Yeah, but you guys have to consider that I am a recovered alcoholic and I spend almost all my time and almost all the people who are my friends are Ibound and determined to help each other mentally and spiritually and I have found since I found this site I actually spend a good portion of my time actually answering those things for people who need help with questions about drugs I take and illnesses I have such as panic disorder.  I have an extreme case of panic disorder but I consider myself to rather well adjusted.                                                                                                                                                                                                                

I have been down that road of psychiatrist and counselors already and must agree most counselors and psychologist really do have your best interest at heart and really do want to help you.  And if I felt like I needed one I would find one in a minute.  But the psychiatrists?  Hell No.  I have seen them and the ones available for new patients in Lexington,KY are crap and that is why they are seeing new patients.  And I work in the insurance industry and you guys would not believe the amount of stuff that doctors give psychiatrist to push some new med, vacations, huge lunches for the whole office, dougnuts and coffee in the morning.  They bribe them and the doctors in turn write nothing but that one drug they are pushing.  I am dead set against it.  If I have a crisis I have an AA sponsor who also is a trained therapist who spent her life working with rape counseling and is my AA sponsor and has been since I joined AA when I was 24 and she was younger than I am now.  I am now 46 and she is 72.  I love the idea of counselors.  They are great.  But lets just break it down for you.   I am a 46 year old gay male who has been in AA for 22 years, I have extreme panic disorder yet function and hold down a job full time, I maintain a home and clean it and pay the bills and I have a mentally disabled brother who lives in my home that my parents cannot handle but I can.  I have seen psychiatrists long years before this who have the drug rep hiding around the corner.  I am well adjusted for my circumstances and degree of mental illness and the psychiatrist with the drug rep hiding around the corner with their free trip to Hawaii for the doctor can stay togethor.  I have one of the best family doctors you can find and he would always in full faith reccomend anything I need.  He is honest and he does not care if I like what he says.  He says what I need.  And frankly I will choose counseling if I feel like I need it at anytime I feel it might be needed and would never hesitate.  But my doctor says that psychiatrists are the ones who did bad in medical school that they had to put somewhere and for some reason I believe him.  Sorry so long winded. Oh I greatly appreciate the reccomendations but really all I want to know is this.  Do you guys think I may have ms or not and how should I pursue it?  Should I wait a while. Should I go immediately someplace like Cleveland clinic?  Should I just deal with the symptoms I have and wait a while to the doctor decides to test again?  That really is all.  I know my own state of mental health.  Even my doctor says I am very well for a bipolar person because I have a great deal of self knowledge and monitor my own symptoms well.  Anyway I really appreciate the mental health suggestions, but I guess in the end I have already decided against a psychiatrist.  I do not trust them.
Helpful - 0
1710955 tn?1309446473
I don't think JJ was saying go to a shrink, because you're a hypochondriac. I feel she was saying it so maybe they could help you sort through things.

Personally, I would see a psychologist. Psychologists can't actually prescribe meds, and aren't really on the med bandwagon like a psychritrist.

When you're dealing with a chronic disease, whether it's MS or something else, a lot of patients seek help through counselling.  It can help you deal with the up and down emotions you might have from your medical condition.

I'm not afraid to admit it, but I see a counsellor for that very reason.  And here I go again with promoting another medical establishment...if you change your mind, look into Paul Dalton Services.  I see a counsellor there that I love, and she has never pushed any meds on me.  I inquired to her about something for my anxiety.  She in turn recommended something and when I agreed, she contacted my pcp to write the script.

And I don't think it's just shrinks pushing cymbalta.  I've had my pcp and rheumy push that drug on me repeatedly, at almost every appt.  They both say, you should really try this. It's great for pain and it might help with your mood.  I have always, and will to continue to decline this med.  I almost feel like there's a hidden agenda for both of my docs to be so persistent with this one particular med...maybe they're getting cutbacks from the pharmaceutical company...idk

The whole point of my response was to say I didn't think JJ was calling you crazy.  Here I go again with the rambling! Sorry!
Helpful - 0
Avatar universal
Hey JJ,  thanks for the reccomendation about the shrink but I will pass.  I saw shrinks for years.  I have a diagnosis and every shrink I saw came up with the same diagnosis my family doctor has.  To be frank the shrinks are usually trying to push expensive name brand meds and I do not know why and the last one I saw was so demanding that I take a drug called cymbalta when it still was not working for me that he put me in the hospital with near liver failure.  Not doing that again.  My doc knows me, he treats me well, he listens to me and not gonna see another shrink.  The ones that are taking new patients here in my town are incompetent and that is the only reason they have opening is they keep losing patients who will never return.  I appreciate the reccomendation I really do, but my family doctor would tell me if he thought I was a hypochondriac, plus I know how to read their code numbers and I know what the numbers mean he writes on my chart and he has never even insinuated it.  In fact he agrees with me that we need to wait a while and do more ms tests.  Just not willing to go to a shrink who is a quack just to have somebody say I do not imagine illness. LOL
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
You are definitely showing signs of 'something' neurological going on so please make sure you do get a second opinion, preferably one who speciaises in MS. I'm not saying it is or it isn't but its possible.

Hmmmm it always makes me roll my eyes when a neuro's theory is mental health and the person has never had a mental health issue before OR they do have 'a' type of mental health issue, usually one thats totally unrelated to health anxiety. More mental when the dr's that know the person quite well (general dr, psychologist, psychiatrist etc) are the ones saying MS or what ever.

Having said that, you do have 'panic disorder' which is from the anxiety box so you really should get assessed by a psychiatrist, actually I usually recommend people do when ever the mental health theory gets put on the table. Assessment is the only way to get that turkey off it and if it is then you are already seeing the right professional anyway, cant hurt and it should be rather helpful!

Many mental health medications are CNS delivered so looking at your medication(s) is one idea you could explore, drugs.com is basic but good. Another idea already mentioned is TIA, and getting your heart health looked into might not be a bad idea either. At this stage try to keep an open mind, focus on putting one foot in front of the other because unfortunately sometimes getting it all sorted out can often take time.

Cheers..........JJ
Helpful - 0
Avatar universal
Hi Max

Yes TIA was mentioned.  The hospital checked it out first with a cat scan, and I guess blood work.  The hospital said I did not have one.  Then my family doctor said not all TIA's show up on a cat scan and not all cause a brain bleed.


The neurologist I was referred to at first said he thought most likely I had ms and then he said also before I completed the tests that he thought I could have had a TIA and then after all the tests were completed he just basically called me crazy.  Well we already know I am crazy.  That is besides the point.

But I have never had a history of being a hypochondriac.  Whether I am crazy or not LOL.  But what concerns me most is that I had been bumping into doors and losing my balance when walking in the house in the dark at night before I had the possible TIA episode.  Most of my symptoms were there before the incident.

So I really just do not know.  I can tell you this.  I really had not much of an idea about ms.  Nobody in my family had ms but I had a very poor great grandmother who was in a wheel chair and I never knew why.but that could be any number of reasons.

I basically thought MS was sort of like Huntington's Disease or something and I did not know much about it.  Since the doctor suggested I might have it and when I came home and looked up the symptoms of ms you could have knocked me out of my chair.

It was like as soon as I started reading about it I found that 19 symptoms were listed on that page and i had 17 of them.  The only thing really that I do not have is pain.  

Believe me I do not want MS.  I have investigated quite a bit of it and it seems awful.  The pain, the loss of mobility, the unbelievable cost of medications.

I work as a Prescription drug benefit administrator.  Basically I work for a company that helps enforce your insurance companies prescription drug rules and sends out mail order medication as well.  I had an organization call to help a woman pay for her ms drug the name of the drug I have forgotten.  Was it Gylenya?  I forget the name but it was 14,400 dollars for a 3 month supply.  That is more than people pay for HIV drugs or cancer drugs.

So no I sure don't want it.  But what I want even less is to put off treatment because somebody cannot see it.  If it appears the symptoms are there but nobody can see a lesion then I am stuck with this diagnosis for now that reads "unknown neurological syndrome"   LOL.    I just do not know what else to do.  I know my next neurologist will have to be an ms specialist but I do not know if I should go right away to one or if I should wait a while and let them run a new MRI.

Sorry to be so winded here and I thank all of you for you'r kindness in helping me.  I really am about at the end of my rope with this.

David
Lexington,KY
Helpful - 0
Avatar universal
Thank you for the help.  I will look into the Cleveland clinic.
Helpful - 0
2015036 tn?1332997788
Hi David,

Welcome.  It sure does sound suspicious. In addition to MS, it also sounds a lot like what happened to my husband.  Has anyone mentioned a T.I.A.(transient ischaemic attack) to you.  It wouldn't show up on an mri necessarily-my husband's didn't.  The neurological symptoms he experiened lasted a long time.  

If there are several things happening at the same time (optical migraines, T.I.A., possible neurological disorder, and panic disorder), it can be hard for them to figure out.  

Tammy

Helpful - 0
1710955 tn?1309446473
Hi, I'm from KY too!  I see a MS Specialist in Lexington. He's associated with Central Baptist Hospital. His office is separate from the hospital, but on Nichlolasville too.

I also see a MS specialist at the Cleveland Clinic's Mellen Center once a year.  The center specifically deals with MS, and they receive all the latest info before most neuros do.  If you're planning on looking out of state, I would definitely recommend there!

Good luck!
Laura
Helpful - 0
Avatar universal
Yes Sarah I take klonopin for panic attacks and I take tegretol for a mild case of bipolar disorder.  Both of those have already been investigated as a possible cause of symptoms and have been ruled out.  I live in Lexington,Ky and I have been thinking of going to Cincinnati Ohio because I hear there is a complete hospital unit there full of doctors who treat only ms and having them look at the disc they gave me.  It is not like I am trained to read it. LOL
Helpful - 0
Avatar universal
David
Do you take medication for your anxiety?  
Trust me, there are a lot of jerky neuro's out there, one of mine told me I had alzheimers......ha ha ha, I got the last laugh on him!
Helpful - 0
Avatar universal
thank you Sarah.  I think I am running out of patience but the fact that you

went from 1981 to a couple years back to get a diagnosis makes me feel a

little bit better.  Sarah I may have an anxiety disorder but I know I am not a

hypochondriac and I know I have not imagined these symptoms.  Hugs.

David
Helpful - 0
Avatar universal
Hi David
YES, get a copy of the MRI on disc and take it to another neuro for a 2nd opinion.

It is possible to have MS and not have lesions show.  Your lesions may happen later.  I was Dx last year and my neuro figures I had MS since 1981.  I had 4 crapy neuro's before this wonderful person and he found my leions on an MRI from 2005, so not all neuro's can read them, they just read the report the radiologists types.


It may require patience from you!  You might also contact a rheumatologist and get his take on your problems.  Remember that MS moves slowly and this may take some time and lots of patience.

Keep a journal by month of symptoms, it will help your 2nd opinion neuro.

At any rate, welcome to our corner, we are all here to learn from each other!
Sarah
Helpful - 0
2
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease