Hypochondriasis

[either/or]

I just want to vent... mainly because I have no one that will listen anymore.

This forum has been a lifesaver for me. So many people have offered wonderful advice and words of wisdom that stick with me daily-I'm beyond grateful.

If anyone remembers me, I posted last March for the first time. The words 'Multiple Sclerosis' were mentioned to me for the second time in four years and I lost it. Most of you handle it so much better than I did. I'm just a fool.

I had a beautiful baby girl 6 weeks ago. My third girl! She's amazing. She had health issues initially- what a nightmare. Everything is fine now thankfully.

I recently went to my post-partum appt. and my doc was typing something in my file and I saw under dx's 'anxiety, high blood pressure, depression, hypochondriasis...'

I've never heard of the word 'hypochondriasis' but I knew what it meant. It pisses me off. I am crazy- but so many people I meet are completely crazy in some way. It frustrates me that in my docs file it states that I'm a hypochondriac. Will I ever be taken seriously now?

Three weeks after I gave birth my lower left leg went numb. I can more easily stand alone on my right leg than my left. I'm not saying it's MS- I just don't know what it is. I sometimes feel like I'm going to fall.

I'm not going to go to the doctor. I know what will happen. My neuro will have a restrained smile on her face and tell me 'it's not MS- don't worry- go home and forget about MS.' She once told me that I act the way I do because MS was mentioned to me as a possible dx. Eventually I will forget about MS and resume life as normal.

4 1/2 years ago I had sever muscle weakness in my right limbs for about a week- ER doc dxed 'stroke or MS presentation.' Last March I had symptoms of Optic Neuritis (pain with eye movement for two weeks), but it couldn't be confirmed since there was no vision or color vision loss. Also MRI was normal. No other tests were performed.

In May I had Occipital Neuralgia that lasted 4 weeks & developed the L'hermitte's sign thereafter that I still deal with mildly.

During my pregnancy I had my B12 levels checked because I was anemic. My result was 237 I think. I took sublingual methyl B12 for 6 weeks (5000 mgs daily). I was retested and my new result after supplementation was 230. I now get injections at a local diet clinic since my docs tell me they won't prescribe injections because anything above 200 is a normal result. I've read otherwise.

Maybe I am a hypochondriac... but I have real symptoms and this frustrates me. I know many of you have gone through this. I don't know if I have MS- maybe it's just a B12 absorption issue. I don't care right now anyway. I'm nursing my daughter and am not interested in pursuing a dx which would lead to DMDs. I just think it's sad that my docs all treat me like sh*t because of the 'hypochondiasis' dx in my chart. If it's ever proven I have something definite, I wonder if they will remove the hypochondriasis dx. I wonder if they'll apologize.

I visited a friend yesterday who is 33 with obvious neuro issues. She's a single, super****y school teacher with her Master's degree in English. Her mom has Huntingtons disease. Her blood tests and MRI came back normal. She's still waiting for the Huntingtons result. She told me if she has it she'll be sad for a week and then move on. I'm not like her. That news would permanently destroy my happiness. I wish I could just be normal. I wish I could be happy.

No responses needed. I have such little time these days to 'dial-up' (cheap DH). Thanks for reading and for prior support.

I also want to mention that if I do have MS, it hasn't been awful to me. Facing a dx one will read such horrifying things. If I have it, it's been almost 5 years and everything is generally normal. I feel some numbness, but my motor skills are unaffected and I have no disability. I think for many, MS can be mild for many years (so I've read).

Good luck to you all.

[Jmak]

L'hermitte's sign was one of my first symptoms. I doubt a neurologist would not take that seriously. Neuros also know that many first attacks are after a pregnancy.

I would guess a doctor wouldn't prescribe anything for you until you stop breast feeding, if you are. I do know lots of weird things happen after you give birth. One of my legs was completely numb for about 9 months after my epidural. MS related? Maybe, but I didn't have it when they put that IV in.

I really don't want the details of my medical charts. Ack! I saw a few from my therapist and then realized I wasn't fooling anybody. Your new neuro wouldn't see those records for awhile anyway.

Just my two cents. Probably not worth much more...

[agate]

Hi either/or,

Congratulations on the birth of your third daughter! And it's good that she's turning out to be healthy.

You might be surprised at how little attention doctors give to your medical records. I'm guessing that this inattention is because doctors feel so pressed for time.

It sounds as if it was your OB/GYN doctor who entered "hypochondriasis" on your record--? Why don't you ask for a copy of the record and make sure that that word is still on there, then make an appointment with him and ask him why he put it in there. He just might agree to take it out, especially if you are reasonable but firm and not confrontational when you talk with him.

You said you just wanted to vent. I hope you won't mind this suggestion. And I can't imagine why you think you're crazy.:)

[newlyb12def]

You have a right to view your medical record, and to have corrections made- just in case you are interested in pursuing that option (HIPAA). They will not erase anything in your medical record, but will add an addendem. I doubt they will apologize.
I'd be angry, too. The doctor is invalidating your symptoms. You can always engage in a frank discussion with him.
You're symptoms are mainly sensory in nature, and I'm sure that the doctor is viewing them as subjective evidence rather than objective evidence (one's own view vs. strict and measurable reality) and dismissing you on that basis.
There are a couple of members here who have objective evidence of neurological disease (MS or otherwise), but are still being treated like hypochondriacs.
A fresh set of eyes or a measurable disease progression could help focus a diagnosis. Pursue another doctor, or wait for things to progress (although I hope it doesn't).
Sorry you have to go through this. If it makes you feel any better, I'm "neurotic" (I was startled to read that, but it's probably a legit diagnosis). I was diagnosed with MS after that, but I'm still neurotic. :D
Congratulations on the birth of you daughter! Glad to hear that she is doing well now.
-Kay

[mmcc53]

I recently went to my post-partum appt. and my doc was typing something in my file and I saw under dx's 'anxiety, high blood pressure, depression, hypochondriasis...'

I've never heard of the word 'hypochondriasis' but I knew what it meant. It pisses me off. I am crazy- but so many people I meet are completely crazy in some way. It frustrates me that in my docs file it states that I'm a hypochondriac. Will I ever be taken seriously now? That's a real problem. Request a copy of your medical records from the doc. Then when you get them ask why he wrote that in your record WITHOUT telling you.

Hypochondriasis is considered a mental disorder. Did he do anything about getting you treatment?????

In other words - put him on the spot and ask why he diagnosed you with that, then didn't tell you or recommend appropriate treatment. Make an appointment and do this face to face, CALMLY.

And tell him if he thought it was of such minor importance that he didn't mention it or recommend treatment, that you want it removed from your record.

During my pregnancy I had my B12 levels checked because I was anemic. My result was 237 I think. I took sublingual methyl B12 for 6 weeks (5000 mgs daily). I was retested and my new result after supplementation was 230. I now get injections at a local diet clinic since my docs tell me they won't prescribe injections because anything above 200 is a normal result. I've read otherwise. Why don't you get the diet clinic to give you a scrip and inject at home. Its easy and the stuff is extremely cheap. 200 is too low.

I just think it's sad that my docs all treat me like sh*t because of the 'hypochondiasis' dx in my chart. If it's ever proven I have something definite, I wonder if they will remove the hypochondriasis dx. I wonder if they'll apologize.
Apologize? Not in your lifetime.......

[MS Bites]

Your b12 is too low. Current theory is around 500 is considered the normal level for b12. Perhaps your doc is just not current with today's standards.

[Abby2006]

Hi I'll have to print that off and read it'

Abby

[either/or]

Thanks for the replies. This is the first chance I've had to log on and I am so grateful for all of the responses.

It's sad, I think about this day in and day out, but have no one to discuss it with but all of you. The details I think about... my husband won't listen... my docs won't listen... I am so grateful for this forum.

I want to confront my docs on the 'Hypochondraisis' in my chart-- I don't know which one put it in there, but I am afraid that if I bring it up, I won't be able to defend myself completely. I have a fantasy that maybe they'll find out what's wrong eventually and I will e-mail each and every one of them telling them, 'look- I know you won't lose any sleep over this but you made my life miserable for a very long time...' or something like that... like they'll even care.

I went to my PCP on Monday. I have a new symptom- if it's MS-related, who knows. I'm dizzy. Mildly dizzy- but it drives me crazy and makes me feel nauseous sometimes. It's been going on for over two weeks now. I thought maybe it was a post-partum iron-deficiency... but iron hasn't helped. I thought it could be my new blood pressure med- so I switched back to the old... that hasn't helped. I finally went to my PCP- who ordered a full blood panel and then some. Most of the results are back and are normal. I mentioned MS and he snapped at me. He said, 'look- you've seen two neuros and both have dismissed MS.' I replied, 'but I still feel symtpoms!' He said, 'hmm' and changed the subject. I made an appointment with yet a different neuro on December 2nd. God give me the guts to stand my ground and not let the new neuro treat me like sh*t. I wouldn't bother going to a neuro but this new dizziness thing scares me and is hard to ignore. I HATE THIS! How can they dismiss MS anyway? A normal MRI and that's it. Not even with contrast. Geez I like the idea of not having MS- but I would like it more if the symptoms would go away.

In the meantime, I have the cutest baby. She seems to have grown up over the past few days. She holds her head on her own all of a sudden and coos a lot. My other two children are blonde but this one came out with a ton of dark brown hair and a big birth mark on her eye (which should go away within the next several months). She really is cute though. I do count my blessings... and I have many.

[fahrmar]

It took me 12 years to get diagnosed. THE most common misdiagnosis for MS is "mood disorder" or some other mental disorder... as you have experienced. And as I experienced. What percentage is it of MS'ers present with normal brain MRIs? 5%???????

[newlyb12def]

either/or-
I'm glad to hear that you've made an appointment with another neurologist, and that you are focusing on the good things in life.
Some diagnoses take a while. The only things that you can do right now are to advocate for yourself and stay positive.
It may be necessary to vent outside your immediate family for right now if they are not able to be supportive. Try not to take it too personally- they love you and don't want anything serious to be wrong with you. In the meantime, you can vent here, find a local support group, or councilor.
Hang in there, and congratulations on that beautiful new baby!
-Kay

[mmcc53]

It sounds like you are convinced you have MS. The docs are convinced you don't.

I really recommend that YOU stop focusing on the idea that you have MS and more important, stop raising that particular disease with the docs. You have symptoms of something. If you keep telling them that you think you have MS, they are going to keep dismissing you.

Instead, insist that they find out WHAT is wrong with you. If they don't think it is MS, then push them/demand that they find out what is causing the problem. Put the ball in their court.

There are a whole lot of things which mimic MS. I actually think you should stop focussing on the idea that you have MS and start focussing on getting a diagnosis and/or relief from the problems you are having.

[either/or]

I completely agree with you MMCC53- you offer great advice. When I go to the doctor, I purposely tell myself, 'don't mention MS this visit,' and somehow, it often pops out of my mouth-- because I am truly an idiot who often can't control her mouth.

This stands for social situations as well (yikes!). The other day I was talking with a lady who met her husband in Guadalajara (she was from there as well). I told her how I went to Guadalajara 10 years ago and I didn't meet a man... thank God. I said 'thank God'- and I didn't mean it at all. I just said it because speak before I think- because I am crazy!

When I see the neuro the next time, I plan on addressing the dizziness alone if my PCP doesn't find a good reason why it's happening. I received my final blood results... my B12 went from 230 to >2000 with injections. My thyroid (TSH) was low (.53 and normal is .4 to 4.0)- but within normal range. We'll see what doc says.

I have a question... I am planning on getting a copper IUD. Does anyone know anything about having copper placed within the body... any side effects I mean??

[cricket52]

Hi either/or:

Congrats on the birth of your third daughter. Glad to hear she is doing well now.

You have received some good advice. Unfortunately you are not alone. This forum has been a lifeline to many of us. After a neurological episode in 2001 my hospital chart read hysteria as a differential dx. My last neuro apt. has me thinking I am being labelled with a conversion disorder.

I agree with the many who think you should quietly sit down with your doctor and ask him why he made the dx, what made him come to that conclusion, and what he intends to do about it. If you want it off your chart where I live you have to send a letter. I have done that in the past successfully because of a doctors mistake.

As for the copper IUD I don't know of anyone personally who has had problems. It's been on the market for many years.

Chin up - we may be crazy but we aren't stupid. :)

[BBS1951]

Your "real" problem is that your B12 level is way too low, not that you are hypochondriacal. Get thee to a doc who will let you inject B12. And find out why its too low. Often its due to pernicious anemia, in which case you will need B12 shots for a lifetime.

Low B12 can cause symptoms that are just like MS. If its not corrected, eventually, after a long time, it can kill you. Its the most missed diagnosis in the field of medicine
Go get yourself the book, Could it be B12? It will save your life and save your nervous system.

[daymoon]

It is good your seeing another neuro.....for ten years they said I was 'stressed' before it was final. I hope this neuro is more knowledgeable about MS. I would recommend you check with the National MS Society for a recommendation to a good neuro. I know there a lot of neuro's that don't have a clue or don;t want to deal with MS. You need to see one that has a clue. And make sure they have the MRI done with contrast!.
Good Luck...

[either/or]

My brain is all over the place tonight (and always)- forgive me! I really never seem to have time to log on with the new baby... I just put her down for a nap and I didn't want to let her go- but it's hard to type with one hand... and I shouldn't be on now- I'm throwing a party tomorrow for my almost four-year-old and there's a lot to do! I'm so grateful to have somewhere to go when haunted with sad thoughts.

My B12 level is now >2000 after injections... and yet I still feel funny. I'm dizzy- but it's getting better. I felt like I was on a boat for a few weeks...

The truth is I don't think I want to know I have MS. It scares me. I know that all can identify with this thought.

I saw my 3rd neurologist this week. She was quite nice... I never mentioned MS- I just told her I was dizzy & she asked me about the nature of the dizziness and gave me a full neuro exam. Exam normal.

She told me she read the other neuro's notes about my fear of MS. I told her I saw Hypochondriasis in my chart at my last Dr. visit. With a grin she asked, 'you saw that?'

I nodded and told her that I would much rather have that diagnosis than an MS dx but I am still having symptoms. She told me I had every right to pursue the nature of my symptoms and ordered VEP & repeat MRI. She also told me that she sometimes thinks she has some of the disorders she's dxed for others (trying to comfort me I guess).

My neuro also said sometimes people have neuro symptoms off and on that can't ever be explained. Hmmm.....

I went for the VEP today and I'm depressed. I'm afraid of the result. You see, the docs don't believe I ever had Optic Neuritis because I never developed blurry vision or color blindness. I just had the pain with movement. VEP should confirm whether or not I had it, right? What if it has remyelinated in the past 9 months since the episode?

How many of you have had normal neuro exams? It's been almost 5 years since my first symptom. I don't think MS would be so scary if it keeps doing what it is doing- I mean- each attack resolves itself within 4-6 weeks or less. If each attack didn't threaten to cause permanent damage, it wouldn't be as scary. The only strangeness I feel right now is a slightly numb left ankle- and a dizzy bout a few times a day.

I watched Young Frankenstein the other night with Terri Garr (an MSer) and Gene Wilder's character kept talking about the CNS and not in a good way and I wanted to throw up.

My friend who was just dxed with Huntington's disease is coming to my party tomorrow. She is doing great with her dx. She found out for sure two weeks ago. Sent me a text simply stating, 'It turns out I have hd.' She was sad for less than a week and now she's so over it. She's amazing. I suck.

I have been depressed for years. I am nursing my baby and can't take pills, so thank you for your support and responses. It helps tremendously with my depression to have faceless friends who can relate. I think of many of you and your stories often.

I'll let you know whether or not I'm a Hypochondriac as soon as the results are in. I'm going to postpone the MRI until I get VEP results. Does anyone know how long the contrast will affect my breastmilk? How many days after will I have to 'pump and dump'?

Thanks again for support...

[newlyb12def]

You don't suck!
People deal with things differently, and everyone has their own strengths and weaknesses.
Don't hang your sanity on one test! The results will not undo the symptoms you experienced.
It may take a while to figure out what's been going on. Try to stay positive, and focus on other things.
Hang in there,
-Kay

[Mariel]

I had that hypochondriac dx from l7-52. Then got MS dx through MRI, Visual Revoked Response, Visual Fields, clinical signs. Then got Porphyria dx (this is a congenital disease which I always had, even during hypochondriasis dx, but no doctor thought of it, or if one did, he used an inadequate testing method for my form of porphyria, that is, 24 hour urine only--he did not tell me what he was testing, but I think I know now). Now I have yet another dx, Essential Thrombocythemia, and no one knows for sure if that is congenital or a misfortune due to a cosmic ray hitting one stem cell, or pollution in the environment, or a hit by the Wicked Witch of the West. So you see you can have that dx the OB added on and it may not, probably does not, mean a thing.

Except that I believe, personally, that that dx should never be added on in a casual way.

[terric]

It has been hinted to me by my neuro that my symptoms might be psychological, although I had a positive VER and have 9 brain lesions. My L.P. was neg.

I only went to the neuro because I had symptoms, but I thought I might have Parkinson's. M.S. never crossed my mind.

To be honest I don't care what I have, but I want to feel better, so I wish the neuros would figure this out. I want to know if it's treatable as my cognition is going down the tubes fast, so fast that I wonder if I have alzheimer's along with something else.

I think many of us have been labled as having some psychological disorder. Lots of neuro stuff is very hard to diagnosis so it's easier to say that we are hypochondriacs.

Congratulations on your baby girl!

terric

[Nancy T]

I have been where you are for 9 years. Told MS, then told hypochondriac. Have not seen a neuro, nor asked any doctor for help with a diagnosis, since 2003, and all my experience since then confirms that this is the right course. Don't ask, don't tell. Don't say anything unless a symptom is intolerable. And don't mention your other symptoms, just the bad one.

In my experience, you can forget about doctors ever really taking you seriously again. No matter what happens to you--no matter what test results you have or what diagnosis you might eventually get--you will always be considered one, and no doctor will apologize or retract what they said. They will always be able to smugly justify what they wrote or said.

Lhermitte's and stuff, well, you know, "we're all getting older," "stop it, you don't have MS," "you gotta let it go," etc.

The reality is what one PCP said to me: "Sometimes these things are never diagnosed."

I am fine with that. I am NOT fine with being looked at as a hypochondriac. I will never understand why they consider it so much fun, so necessary, so unquestionably correct, to pin that label on people who aren't hypochondriacs. They have NO IDEA, not the slightest, about how devastating that is to a person, about the far-reaching harmful consequences of doing that to a person.

Sorry to be negative. Don't ever get your hopes up, no matter how much advice you get here about seeing another doctor, insisting on a change in your records, insisting on being taken seriously, etc.

Trying to tell them you're not a hypochondriac will merely strengthen their view of you as an anxious and unreasonable person. Sorry.

It sounds like you've learned this lesson already--don't ever get your hopes up. Expect to have negative test results despite symptoms. Expect to get that "restrained smile" and a kind but clear admonition to forget the whole thing. Because there's nothing wrong with you. Expect nothing, and you won't get hurt again, or at least not any worse than you've already been hurt.

If they think we're just hypochondriacs, then why the #### did they ever say "MS" in the first place!!!! They could have spared us all this if they just hadn't said it in the first place.

Nancy T.

[either/or]

I'm one-hand typing holding bb- so this'll be brief.

Kay- Thanks Kay... good advice.

Mariel- You have each of those conditions or do they keep changin your dx?

Terric- So you are undiagnosed? I'm sorry about your frustration. I agree with how u feel.

Nancy- I could have written your rant. I know that I am a bit crazy- but I am clearly aware of my craziness and the nature of it.

Okay- put baby down... :) I AM NOT being a hypochondriac about this... and I thank all of you for not thinking of me as one as well. I wish I were one... I'd prefer it over MS. Numbness, dizziness, pain, feelings of bugs crawling under my skin, electric shocks, muscle weakness- these are all normal bodily functions, right?

It could be something other than MS. My MRI was normal 9 months ago after 4 years since my first symptom. My neuro exam has been normal twice (last May and this month). I can just relate to MS symptoms so much. I am in my mid 30's... female...

I absolutely never feel fatigued. I always think of this as the most common MS symptom. This gives me a little hope that it's not MS.

I think my biggest MS fear is having it- and bringing it into my family's gene pool. I don't want to constantly fear my daughters getting it someday. My mom has had arthritis for years- but it doesn't stop her in the least. She just found out it's RA- so I guess autoimmune disease does run in my family. I hate that fact!

Did you hear that there will be an HIV vaccine in 5 years? I saw that on CNN this morning.

So many of the autoimmune diseases can be controlled and treated more easily than MS too. Why is MS so out of control?

On a different note- my friend with Huntington's came to my successful 4th bday party for my daughter yesterday. She looks thin and told me that Huntington's causes her to burn 5000 calories per day! I couldn't understand her explanation because sometimes she drops words and I hate asking her to repeat herself so I only do when necessary. She's so cute- she got my husband's hot brother's phone number! :)

[Mariel]

In answer to your question, I have at least two diseases of those I've been dx'd with. Maybe 3. Hard to know for sure. Several in my family had MS and several had Porphyria, so maybe I got both. For sure I have Essential Thrombocythemia, but only had symptoms of that the last four to six years.

I didn't claim all those diseases to win sympathy, just to show you how you can go for 35 years with a Hypochondriac label, and going to various psychologists and dream groups and mediation groups trying to fight it, and then they find you have a basketful of real things. It changes your whole life from what it might have been. You become fixated on fixing your mind and soul.

Everyone needs to fix their mind and soul, but not to an obsessive level where you think every pain or symptom you have is hypochondria. One can really never grow out of such a label. So don't accept it. It is not true, I'll wager.

[fahrmar]

I am fine with that. I am NOT fine with being looked at as a hypochondriac. I will never understand why they consider it so much fun, so necessary, so unquestionably correct, to pin that label on people who aren't hypochondriacs. They have NO IDEA, not the slightest, about how devastating that is to a person, about the far-reaching harmful consequences of doing that to a person.

Trying to tell them you're not a hypochondriac will merely strengthen their view of you as an anxious and unreasonable person. Sorry.


If they think we're just hypochondriacs, then why the #### did they ever say "MS" in the first place!!!!
Nancy T.

I had a doctor squeeze my head like a melon and tell me, "Nothing's going on in your brain!" I inisted on a referral to a rheumatologist, because I had seen one three years before, so there was precedent.

The rheumotologist referred my for my first MRI and to my neurologist. All tests were Cc'd to my PCP, (aka: melon head) who was actually quite humbled. I stayed with him because he did do a 180, and now addresses everything I bring up to him. It's nice to finally be taken serously, instead of being treated like a neurotic.

But why did it have to take 10 years of being dismissed and marginalized? I read somehwere that most (like 70% or more) of MSers are first diagnosed as neurotic, aka hypochondiracs. Lovely.

[Nancy T]

OMG, Mary--I should count myself lucky! The worst I got was a lecture! Your doctor needs some anger management courses or something. That's pretty bad. Glad to hear he turned around, though.

[lady_express_44]

I know that I am a bit crazy- but I am clearly aware of my craziness and the nature of it.

Okay- put baby down... :) I AM NOT being a hypochondriac about this... and I thank all of you for not thinking of me as one as well. I wish I were one... I'd prefer it over MS. Numbness, dizziness, pain, feelings of bugs crawling under my skin, electric shocks, muscle weakness- these are all normal bodily functions, right?

I know people who are hypochondriacs, or have a mental illness, PLUS MS. Unfortunately we don't get a "GET OUT OF OTHER DX FREE" card when we have MS. :(

Cherie

[either/or]

I wanted to give an update and get opinions...

I am STILL WAITING for my VER/ VEP results (whichever it's called). I had it performed December 5th. My dizziness is still present-- has gotten much better- but it still scares me.

On December 23rd my right eye started to hurt with movement. It still hurts a little, but yesterday I noticed the pain finally has lessened. It was my left eye last time (9 months ago)... but again, I did not lose my ability to see certain colors nor did I lose my vision... still 20/20 (I check it all the time).

Could this be Optic Neuritis? Hit with it twice & no loss of vision at all, but tons of pain with eye movement... no light sensitivity... not a migraine as far as I can tell... no headache really either.

I contacted my Ophthalmologist & neurologist the day the pain began. My neuro e-mailed me back and said that my VER official result is not in but preliminary result is 'normal.' She told me to schedule my MRI and she'll call me with the result. I can tell she feels she knows it will be normal.

My Ophthalmologist called me and told me if I don't lose my vision, I can wait til after the holidays to see him. I got a notice in the mail yesterday that he made the post-holiday appointment for me since I hadn't yet myself... I see him on the 12th. I thought that was strange... but I'm always freaked out and suspicious.

I feel crazy. What I am feeling is real! If I had Optic Neuritis, would the VER definitely pick up on it?

[pokeyleggs]

I had my first bout with MS symptoms right after the birth of my 3rd child. Vertigo, and it was not fun. It took approximately 10 years of crazy come and go symptoms, MRI's, several misdiagnosis, told I was a frustrated house wife and there was nothing neurologically wrong with me other than probably depression and many tests before I was finally diagnosed about 4 years ago.

I saw 4 different neurologists over the years before one who said I had MS and I needed to be treated. It was a long haul but I knew I knew my body better than anyone and that the problems I was having were real. I just was not a text book case right off the bat and the doctors were being very conservative in jumping on the diagnosis wagon, which I now understand because once you are diagnosed its an insurance nightmare. I was just turned down for long term care:(

All I can say is take one day at a time and enjoy every minute of that beautiful baby and if you can stay one of the undiagnosed no matter how frustrating it is not knowing what is really going on in your body you might be better off in the long run. I thought I was going crazy some times not knowing what was making my body go nuts but now I look back and wish I was back in the undiagnosed category I was doing much better then than I am now. Stay in the best shape you can and don't let those doctors bully you around, stay informed. There is lots of good advice here on this forum and it has helped me tremendously over the last several years. Good luck.

Barbara in Houston
AKA Pokeyleggs
RRMS, Brain, Spine, Baclofen
Should be taking more drugs( According to Neuro ) but I hate taking them!

[either/or]

Thanks for response Barbara.

I want very much to believe the docs when they say I don't have MS. I would rather be a frustrated house wife with strange unexplainable neuro symptoms. I am in such denial at times that I am sure that is what it is!

It's hard to stay in denial. I know there's something very wrong... I try to pretend there isn't & then I'll bend my head down and feel the vibration in my leg... or I'll take a long walk with the kids and notice a leg feels very numb... or I'll sit down to have dinner with friends and feel dizzy while looking at them- and my normal wit is gone- cuz all I am thinking of at that moment is MS and how afraid of it I am. This has destroyed my life as I once knew it.

I sometimes try to convince myself that MS might not be so bad. For many it isn't, right? So many times I hear from people, 'I have some friends with MS- they all seem fine!' Many people do okay for a long time I think. I need to believe this. I hope it's true!

It wasn't my intention to seek out a dx by seeing a neuro recently. I was dizzy after having a baby... I visited my PCP/GP first who did a full blood panel. I was hoping for post-partum anemia. No such luck. He told me to see the neuro- which I had already made the appt. for just in case. I knew better from the get go. Neuro thinks I'm nuts and I wish I can back out of it now, but she's ordered the MRI- which I have not scheduled. I'm going to have to go through with it eventually...

The only good that will come out of a diagnosis is that I will need it to receive DMDs eventually. I'm breastfeeding now thank God. No DMD's needed just yet... if they help anyway.

I do enjoy life one day at a time now. All the things that bothered me before seem so silly. I'm most happy when I feel symptom free- which is usually lying in the family bed playing with the kids and laughing with my husband. I treasure these moments! Before the threat of MS, I would probably have been cleaning the house or doing something meaningless instead of taking time out to enjoy life & my young family... that's the upside I guess.

[newlyb12def]

You may want to direct your conversations with doctors towards symptom management. There are medications out there to treat anxiety and paresthesias/dysthesias (abnormal, unpleasant sensations). Figuring out what works/doesn't work may help them reach a diagnosis, and will help you find some relief physically and emotionally.
Hope this helps,
Kay

[either/or]

Thanks for the advice Kay- I actually would love symptom management meds. If I can make my symptoms lessen, I would be able to relax a bit. I am nursing though- so my bottle of Xanax sits untouched for over a year now in my cubbard... and my Prozac... both of which I need and have needed for years. If it's not obvious, I am prone to anxiety, depression and tend to be a little (or a lot) obsessive/compulsive. I will look into this though- thanks Kay- you are always helpful!

On a different note, I just want to state that I'm sorry if I offend any of you with my MS fears. I come here for support because I have very real symptoms- I wish I could prove this. I'm sorry to offend any of you who find my fears irrational. I state this in response to a PM I received from a forum member.

I will only post if I have an urgent need to unless I get an official dx. I will post in the 'for those undxed' section instead (which I usually mean to anyway but always forget to!). It scares me to post with the thought of offending anyone- especially those with official dx's of MS.

[lady_express_44]

On a different note, I just want to state that I'm sorry if I offend any of you with my MS fears. I come here for support because I have very real symptoms- I wish I could prove this. I'm sorry to offend any of you who find my fears irrational. I state this in response to a PM I received from a forum member.

I will only post if I have an urgent need to unless I get an official dx. I will post in the 'for those undxed' section instead (which I usually mean to anyway but always forget to!). It scares me to post with the thought of offending anyone- especially those with official dx's of MS.

e/o,

EVERY MS forum has a number of people who are undx, sometimes for YEARS! There is no rule or expectation that a person be dx before they can "belong" to our club. :rolleyes:

I would have likely been dx much earlier, if I chose to . . . but I preferred denial. So long as I didn't have to put a "label" on it, it didn't exist (what you don't know, can't hurt you, right?). It took about 12 yrs before I let my doctor repeat the words "multiple sclerosis" to me, and another 2 before we could talk about it openly. He did a lot of side-stepping and :rolleyes: before he finally forced me into 'acceptance' . . . but that was MY way of coping.

I still researched constantly, and frequented some of the MS forums to gather information & ask questions. I probably upset a few people (no doubt I still do :p), but that's THEIR problem.

You will get responses from others that acknowledge your anxiety level, and that is probably to be expected since you are afraid of something that you don't know that you have for sure. For some of us who are living with the reality of having this disease (no bones about it), we might want to be where you are, where there is still a chance to have something much less debilitating. This can stir up some impatience (jealousy, envy, intolerance?) on our part . . . but don't take that personally.

Eventually you will either be dx, or not, and your anxiety level will drop . . . I've seen it happen dozens of times on the forums. In the meantime, post where-ever you want . . . and the people that want to respond will.

Cherie

[Nancy T]

I know there's something very wrong... I try to pretend there isn't & then I'll bend my head down and feel the vibration in my leg...

Exact same thing here. The Lhermitte's is the weirdest and the most undeniable thing. It happens and it just reminds you, over and over and over, that something is wrong.

Hopefully you'll get to a point (as I have) where that reminder means nothing and doesn't upset you. It's just the way it (always) is.

Cherie's post (ladyexpress) was great. Perfect.

Good luck in your further diagnostic adventures. You'll feel better when you give up! :)

[bertabobbie]

Your neuro should know that 5% of us have "normal" MRIs. That does not preclude a dx of MS.

Roberta

[terric]

My theory is if an MD can't easily figure out what's wrong with someone, and if one does not have 'classic' signs of an illness, the MD just gives the dx of hypochondriasis. It's so much easier for them. In the long run a patient has been given a very bad label. I would go somewhere else and not let the new MD know anything other doctor's have said. Explain your symptoms confidently, have him/her do a neuro exam and then start with the testing if needed. Don't even hint that an MD said this about you.

terric