Can this really ALL be in my head?? I feel so lost now. Please help!
I'm fairly new to this forum, and I'm still a limbolander. Everybody here is so caring and loving towards each other, I had to come back. I've been dealing with many, many MS like symptoms off and on for 19 years. The scariest thing for me is that my legs just stop wotrking. They jsut quit. It doesn't last for more than 10 to 15 seconds each time, but it seems to be getting worse...like, happening more often these last 4 months. Even if I'm not doing anything strenuous. I've been to a few doctors now and I finally have an appointment with an actual neurologist on May 4, 2011. It's January 26th, 2011 right now. I have no health insurance of any kind, so I pay as I go. It's gonna be a slow process. Slower than usual even with insurance from what I read here.
My question or concern, is that the last PCP (a brand new one for me) talked to me for about 15 minutes and after getting a very brief history, had her big "A-HA!!" moment and said since I was abused by my ex-husband at age 26 and my legs quit working at age 26 (after I left him, by the way), that the mind can do some strange things to our bodies and that it was all in myn head. She didn't even read any of my 3 page "list" of symptoms i handed her in the beginning of the appointment. At the top of that list, was that after I left my ex and just after my 26th birthday, I had got Scarlet Fever from my 4 year old son (he got it at daycaure). It wasn't until just before my 27th birthday that my legs quit on me for the first time. I was really happy at that time too! I was getting my life back! In my brief histroy the "dr" got from me, I told her I suffer from depression, and that clinched it for her. It was definately all in my head. That's when I started crying, not bawling, but definately tears coming down while she stood there and told me this. After she zipped through my physical, she also said I had hyper reflexes but that it was nothing. It didn't mean anything. I looked up what hyper reflexes meant when I got home and guess what I found out? It's another possible symptom of MS! I also discovered that depression can be a symprom too. Go figure.
Has anyone else had this problem with drs? I feel completely lost now and i cant stop crying since that appointment (yes, I'm on zoloft and had been doing really well on 50mg a day for 7 years now...until now that is). I cant even trust my own intuition about anything anymore. What am i supposed to do now? When I discussed this issue with the nurse over the phone the day after my appointment, she sttood by her employer and tried to convince me that maybe i should get phsychological counseling as well as healing my body. Whgat nerve. Is that even legal on her behalf?
Please help me if you can. I just need reassurance that I'm taking the proper steps and not just blowuing money I don't have.
thanks for your valuable and much appreciated time
"Lost In Limboland"
Hi there. I too am stuck in a sort of limbo land. I have a clinical diagnosis of MS and will be seeing my neurologist on the 31st.
First of all, I know how horrible it is to be going through this and having people basically tell you that "You're crazy" or "It's all in your head". I had a PCP tell me that I AND I QUOTE "Exercise 6 days a week and go to counseling". She thought that since my husband was deployed that I was just depressed. Even though all these symptoms started 4 months before we even found out he was being deployed!
The first time I went to the neurologist he agreed that my symptoms look like MS...I failed 3 tests that he did on me during a neuro exam. All pointed to MS. Had a MRI that showed 1 lesion in my frontal lobe (at the time not enough to be diagnosed). So he told me to "wait and see". I was like WHAT???? Wait for another day when I can't get out of my bed because my feet are on fire? Wait till I injure myself again because one of my limbs go numb? Or wait till I'm driving again and my brain literally restarts and I have no idea where I am, what I'm doing in the car or where I am going?
Needless to say...I was frustrated too. But I waited...and surpirsingly and to my delight, my symptoms went away...for the most part. Still had some spasms once in a while and had trouble sleeping. But other than that I felt like a normal person again!!!!! Then in December everything came back with vengeance and I had new symptoms that effected my vision and thinking, speech...etc.
I went to a new doctor in December and talked to her for over 30 minutes! She looked at all my past reports, MRI and so on. dx'd me with MS (clinically).
I am so sorry that you are going through this without insurance...I can't even imagine how much added stress that is on top of what you are already going through. The only things I can suggest are to try and get on to Medicare or Medicade...and look for a new doctor. It's hard to find good ones out there who actually listen to you and look for the answers instead of saying "I dunno...must be all in your head, nothing I can do for you".
I wish you the best of luck and don't give up. This place is absolutely AMAZING!!! I have learned so much from this site and the wonderful people here. Most of all I've learned to trust myself, document everyday what is going on and to stand my ground. I'm not crazy....damn, I wish I was!!! At least there is a pill (or two) for that and I could feel like a person and a mother again.
Have you looked at the health pages yet (top right of your screen, yellow icon) there you'll find lots and lots of information. You might find the one on 'conversion disorder' rather informative, have a read and see if it rings any bells.
Mental health is a very common 'excuse' given out but unless your the type of person that makes a mountain out of a mole hill (all the time) and have extreme health anxiety which makes you over react (a sniffle has to be the bubonic plague etc) then its less likely the cause. Now having said that i still think the most pro active thing you can do is to have your mental health assessed.
The reason behind that recommendation, is if there is nothing to indicate that your mental health is playing a major part in your physical sx, then that posibility can be crossed off the list of ms mimics. The alternative to that, is if that does turn out to be the culprit (doubtful) then tweeking your meds should by all acounts solve all your problems, an easy fix so to speak.
I'm one of those people that needs hard evidence, its far too easy to blame everything on someones state of mind, get your self the poof and go from there.....
Had I been looking. Had I any idea of what was to come, the freezing of my legs for seconds would have been one of the first signs of MS for me. The first time it happened my husband took me to the hospital. Nothing was found. No reason given. Just to check back with my family doctor. It continued to happen on and off for a year or more then went into my right foot. So, yes, it can be a sign of MS.
As far as doctors blaming our symptoms on depression, stress, and anxiety without looking at your profile I can guess you are female. Such a convenient excuse for not listening to a patient. A doctor wouldn't dare suggest that to me today but there was a time and I became very vocal. Yes, it was depression. Situational depression. The situation is my body is betraying me and you don't have an answer. Fine the answer and watch the depression lift!!!
I wish I could "like" your comment like on facebook! I hate how doctors try to blame it on depression or anxiety. I just want to shout..."OF COURSE I'M DEPRESSED, OF COURSE I HAVE ANXIETY!!! MY BODY IS REVOLTING AGAINST ME!!!"
Well - we all know that MS is great at causing depression. But there are many here who report that docs use that symptom against them - and just blame all things on depression. That is a lazy *** doc in my mind.
Get thee to another doc! I think you are doing the right thing by trying to figure out why your legs stop working. And I don't blame you for being so upset! The process of trying to figure out what is going on with your body is exhausting, terrifying and makes you feel so vulnerable. Of course you are upset. Add your financial burden and it's very stressful! Don't let this doc take away your confidence in what you need to do. You know your body better than anyone - and if she knew ANYTHING she would KNOW that depression is a symptom of MS. One of many on a long list! I hope you don't have MS of course, but I hope you can get some answers and find some compassionate care.
You are all such amazing people and so very helpful. I'm crying again, but tears of relief and hope now, not tears of frustration and anguish and disbelief and anger and sadness.
I knew I wasn't alone in this, but you all have made my difficult journey so much easier to endure and liuve with. I almost gave up. I really did. You know what I mean? I don't want to. I have so very much to live for, but I feel so exhsausted from all these horrible symptoms and when you get a stupid ***** doctor who treats you likre one of the herd coming in and going out of her office and won't listen to you literally begging her to help, I honestly didn't know who to turn t to. She was my last hope. At least I got a referral from her to seea neurologist and I see him in May this year. What I'm thinking, is that with my luck all my symptoms will magically vanish (although I kindas hope so) by the tiome I see him in 4 monthsand i wont get anyuwhere with him. Still no diagnosois and still no help when the symptoms do come back. Cuz they always do, with a vengeance.
thank you all so very much for answering my posdt.
honestly, i dont know what i would've done without you.
you are deeply, DEEPLY appreciated and i woll keep all of you in my prayers.
be blessed in all that you do,
Lost In Limboland
JJ, I know what you're saying about the phsychological aspect of depression causing othert things in the body to go haywirew, but I honestly know that is not thre case with me. I'm very even keel and level headed and when i do rarely get a cold or the flu, i just wait it out until it passesa with lots and lots of hot tea. Actually i hadn't been to a dr in 15 years prior to Nov of 2010 (not even to an ob/gyn--I know, I know, but everything in the nether region has always been healthy--thank you Lord!--and yes, i got a pap witrh my recent physical and the results came back fine). I finally gave in and went to the first dr (a total quack by the way--hey, he was cheap and I was desperate) when the symptoms i experienced off and on for the past 2 decades started getting wotrse or more often. My legs giving out in Sept 2010 for the first time in 19 years clenched it for me and i forced myself to go. My legs have given out or "froze" (that's the perfect word for it, sumanadevii!) several times since then and it's terrifying and really embarrassing when it happens out in public. I never know when it's gonna happen.
Honestly, I intensely dislkike doctors. Not personally of course. I'm sure most of them are wondeful people. I guess you could say i'm afraid of them and i find it very hard to trust them. These last two "doctors" just reinforced that for me. Anyway, I'm not a hypochondriac, but I know thatt some people are and it camn really destroy their lives.
Thanks for the input peeps. I'll take any advice or possible causes I can get right now.
Lost In Limboland
Diana - I can relate too well to your situation. It is a sick feeling to have a doctor not really "hear" you - or misinterpret what you are trying to tell them. I've had that happen many times with rheumatologists when I was first being dx with systemic sclerosis. I had neuro symptoms too, and went to neurologists and never once did I think of MS. I had the other diseases (several) already diagnosed - so we weren't looking for anything else. I don't remember why I got my first MRI of the brain, but it was many many years ago and showed evidence of a demilenating disease (MS is one). I had others and they showed more lesions. Not a single doctor said anything about the reports to me. Years later when a spinal tap showed evidence of the proteins and O bands etc. that mean MS - a neuro walked into my hospital room and announced that I had MS and these are the meds I could choose from and left. I felt stunned.
I sometimes would like to go back to those days when the doctors couldn't decide if I had one disease or another. Now - everytime I turn around, I'm diagnosed with a new disease I didn't know or imagine I had. Now that said - the feeling of desperation and aloneness that comes with the search for answers - it's hard to take. As others said - stay strong and document your symptoms. Keep a log of when they happen, how long they last - and a description of the situation you were in at the time. It will help them greatly. It's an objective document of your symptoms, rather than when we speak and they maybe hear a few of the words.
I think doctors are people! Just like every other profession - there are great ones - and there are some doozies! But when we don't have the money or the right insurance to seek out the best - I know - it's very hard to feel like we're getting the best of care. Prepare well for your neuro appt. Make sure you've written down your questions and prepared your symptom document. It will truly help.
I wish you the best, and feel your frustration and pain. Blessings, Jan
Hi. I am unlike you, in that I referred quickly, and was diagnosed about 7 months after going to a neurologist. I have Primary Progressive MS. I say that to let you know I also understand the exhaustion you can feel when your body is fighting against you.
I remember being so tired that the only thing I could do was cry. Hang in there. Let your fight for answers be a source of strength in you.
In the event your symptoms lessen before your neurology appointment, DO NOT cancel. You still want him to check you out, get a history, and run some tests despite how you are feeling. You may have the markers he needs to see in order to make a diagnosis, even without open symptoms. In other words, just because the toothache goes away, it does not mean there is no cavity.
Stay in the buggy, and know there are tons of us riding along with you.
Hi Diana, and I'm glad that your tears are from relief and you are feeling a bit better with things. AS far as how desperate you were - make sure to reach out to those who you know will support and help you through the tough times. Glad we helped. But don't ever give up. There are good med people out there - sometimes it just takes some searching to find them - and it is tiring!
You also know that MS symptoms come and go - so keep that in mind if your symptoms disappear - yippee - but that happens in MS> Continue to keep a good journal of symptoms to share at your next appointment. I also think that JJ's point was to make sure you deal with your depression and anxiety - even if it's caused by MS - don't ignore it and think it will get better with dx. If you get that under control - then dealing with whatever is going on with you will be easier. And then if you still have all these symptoms and that's all under control - a doc may take you more seriously. I'm speaking for her - but I think that was her point. So take care of your mental health as you continue to search for what's going on.
Good luck to you. This forum is great when you feel you have no place to turn and really need to let it all out!
You're all probably gettin' sick of me, but I did forget to say that for my depression I do see a PRN for the meds...I think that's her title. I see her every 6 months for refills and honestlyt, I've been doing great for 7 years up until this last Dr. visit when she told me my pain, vertigo, nausea, eye pain, vision problems, pins and needles, numbness, shocks, loss of balance, memory loss (I call "Brain Farts"), hands trembling, body trembling, face and body twitching and legs "freezing" at the most in-opportune times was all in my head. And that's not eevn ALL of the stuff I'm going through. Just the ones I can remmeber right now...oh, and memeory loss. ..and a lot of the time not being able to piece sentences or even one word together anymore. I feel like my whole body is no longer connected to my brain anymore. Everythings misfiring and just ...off. Ya know? Yea...you all know. I'm sorry that you do, but I'm also glad you understand. I know that's selfish of me and I'm sorry. But because of you all, i have renewed strength and I intend to be here and fight against this crud for a very long time to come.
NEVER GIVE UP! NEVER SURRENDER! -Galaxy Quest- (I think so anyway).
Thnaks guys. You have really stepped up and saved my life...and my mind from losing it completely!
I think I should clarify my recommendation of getting your mental health assessed, a full assessment incorporates a lot more than the general depression or anxiety scales. The assessment is suppose to evaluate your full mental health and work out if your mental health is at such high levels that it is creating physical symptoms, which would mean you have something like conversion disorder.
Conversion disorder is a totally different ball game to depression, depression is probably one of the most, if not the most commonest mental health dx of the western world, conversion disorder is rare!
The point is to know, with out a doubt if what you are dealing with is a mental health issue or probably neurological, a good psychologist or psychiatrist should be able to give you a definitive answer and a report you can use as evidence to support you, if that report states you dont meet the criteria for something like conversion disorder or another alternative diagnosable but similar mental health condition.
It should from what you've said mention your level of depression and current medication etc. Having a dx of depression doesn't negate the evidence that disputes a more (serious) mental health issue, or the posibility of someone also having a neurological condition. Having that peice of paper is proactive and supportive of YOU!
I would also like to make a point that your mental health is taking a beating at the moment and should with out a doubt be your first prioriety, regardless of the cause, depression can be dangerous, as you are well aware. Dont be complacent, be proactive and do something to get you mentally strong enough to deal with what life (including the kitchen sink lol) is throwing at you.
Unfortunately having a preexisting dx of a mental health condition such as depression or GAD puts people in a position of having to prove that it isn't causing their physical sx, all too common and totally unfair but once you have the evidence it should make getting medical attention easier.
PS my mother was undx with gallstones and idopathic pancreatitis for years due to her bipolar dx, she had all the sx but no tests because it was continually asumed it was stress and therefore a comorbid issues, the first test dx the real problem lol.
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