Fortunately, it has never been suggested to me that any of my symptoms could be due to anxiety, stress or depression.
I have had times in my life when I have experienced all of the above and was able to recognize it for what it was. And yes, I did experience some of the symptoms on the list, but nothing like what I am going through now.
If a doctor were to ask me if I felt anxious, under stress or depressed, I would be able to draw on those experiences and outline the few symptoms I had and their duration and why this is different, as well as bringing up test results which support some degenerative process.
I just started seeing a therapist recently (tons of fun at home with a 20 year old Peter Pan as well as other issues including balancing work with health). He commented about how much I am juggling right now and I told him that I did not think I was depressed. He agreed and thought that I am approaching things in a very pragmatic manner. With the neuro sx, he has MS patients and a lot of insight into the varying personalities within the profession and the difficulties patients face in terms of diagnosis.
This is probably yet another reason to make sure that you obtain transcripts of your doctor visits. While the doctor may not say it directly to you, it might be in the transcript that "patient appears to be anxious". Then it puts one in the position to decide whether to discuss this with the doctor or move on. If a doctor does suggest this to you, hopefully you can gather yourself together and explain in a rational, not emotional way why you do not believe this to be the case.
And no, I don't want to go on any SSRIs. I went on them when this journey first started. My PCP said they had ruled out the obvious possibilities and that the process could include finding something much more serious. He asked if I would be able to handle the diagnosis of a serious medical problem; at the time I felt I could not. Paxil was prescribed. I wanted off after 18 months, but was not weaned off it. I found my emotions going dead and went off cold turkey; the 1st two weeks were a nightmare, the next few months I was a drama queen (which I explained to all that I was coming off medication and might be a DQ, so please just tell me if I'm off) and within 6 months, my brain chemistry had been able to get back to being able to function normally.
Can I handle the possibility of a serious medical diagnosis now? Certainly. I'm that much older, wiser and more mature! Every day is a gift.
Audrey
I'm new to this forum. I have some undiagnosed neurological symptoms, mainly in my feet and legs.
To be fair to my GP and Neurologist, neither of them said they thought my symptoms were caused by stress or anxiety. I was actually disappointed to hear that. I would take anxiety over MS any day. I do, however, feel that my symptoms are worsened during times or stress. I'm convinced I have real Neurological issues, but that they are also worsened through stress. I'm also convinced that these days when I'm stressed and anxious it is 'always' due to my symptoms.
My wife still thinks my symptoms may all be down to stress, but she is supportive and understanding. I suppose she is just hoping it's stress herself rather than MS or something serious.
I wonder how many of us give in to the diagnosis of stress as it's prognosis is far better than MS. But then, deep down we all know our bodies, and the stress card doesn't fool us for long.
My last two visits to the ER for breathing problems would be enough for anyone to think it was stress related and I was a nut case. Trying to explain what was happening to me was like talking a foreign language. I tried to explain it was not shortness of breath but the muscles were not working. I couldn't make myself cough. I couldn't clear my throat. I couldn't blow my nose. The muscles were not working....I was aware of breathing shallow.
Right away they wanted to give me something for stress...Which even my neuro gave me the following day. Has it worked? No. If I take double (her orders) it is enough to put me to sleep so...yeah...now I am breathing.
I have an appointment with a pneumologist tomorrow. Wish me luck. I sure hope it isn't blamed on stress and someone helps me.
I think doctors are too quick when they don't have answers to dump medicines on us....As a young mother I used to call it "Mommy Medicine". Medicine given to make Mommy think the child was getting good medical care.
I'll be back later to finish reading all the responses to Quix's original question. This is clearly a topic that produces rapid and heart felt responses. I'm hearing the protest of deeply wounded people.
I will share my initial reactions.
I know when anxiety causes my body to react. I can tell because my blood pressure shoots up to levels seldom seen outside the medical environment. The stressors in my life (environmental, situational, or physiological) have in the past been followed by migraines, hypoglycemic episodes, and brief bouts of depression.
When the stressor went away, so did the physical and emotional symptoms. I'm pretty clear in my own mind that when physical symptoms force me to give up activities and hobbies that once brought me pleasure and relaxation --- that's just not me making me sick.
I have very little confidence that anyone in the medical community can determine that a patient's bodily symptoms have no physiologic cause. This same group is constantly changing it's recommendations about what we should eat, what screening tests we need, what normal test results are, standards for diagnosis, etc. etc. etc.
There are entire series of programs these days that chronicle the cases of patients that went undiagnosed or misdiagnosed for years and years (after seeing a succession of doctors) before a detective minded physician finally pinpointed a correct diagnosis. Most all these people were dismissed with anxiety or depression along the line.
Did you ever hear the story of the woman (always a woman) who penned the epitaph for her own grave marker? It read, "I told you I was sick."
~Mary
Thank you for this!
I have never had a doctor say outright, or even write in my chart (that I'm aware of, and I've seen most of my records), that I was ill because of stress or depression. However, I have OFTEN felt they weren't taking me seriously.
The first (and so far only) neuro I saw spent more time telling me I COULDN'T have MS because my brain MRI showed no lesions (not true, I know) than he did examining me.
When my new PCP checked my arm reflexes, I had no response. Seriously. My right fingers flicked a tiny, tiny bit, and from my left side, nothing at all.
Had the jerk of a neurologist I saw taken me seriously, I may not have damage in my arms that I do today. Maybe he would have looked for something, found something, treated for something that would have slowed things down.
Maybe I'd be able to do my job better and spend longer hours at it because my cognitive issues wouldn't be as advanced.
Maybe not (things have gone downhill rapidly), but maybe. He certainly shouldn't have taken it upon himself to decide nothing neurological was going on. It was clear to me then that it was, and now it's obvious to all.
I don't think a truly somatic person will give an honest answer - but that just reinforces the believe that doctors should err on the side of caution. It isn't right to throw my life, and the lives of thousands of others, away just because some people who come in with the same complaints are seeking attention.
For gosh sakes, give them the attention - just make it a policy to give the attention! Sooner or later someone will catch on to them before any harm is done - but if the patients with real physical problems wait have to wait until later, we face real damage to our bodies and minds.
On a side note, the most dramatic friend I have (if she has a tic, she calls it Tourette's; if she's exceptionally tired, she says her CFS is acting up) is also the most likely to treat me like an attention seeker. Sometimes she's a great friend, though - so I just have to take her in small doses and gauge her attitude for the day.
I've been doing a lot of research, following any and every lead i can find and i started to think about my mother who is dx with bipolar and prior to that it was called manic depression, dx back in the early 60's. For years and years every medical issues she has had is ignored or left untreated due to the assumption that its anxiety and depression related, that is until she's in a medical crisis. EG
1) Hypoglycemia - untreated, cause not investigated
2) Pancreatitis - untreated, she doesn't drink so why, cause not investigated
3) Kidney issues - UTI - self treated unless she goes into renal failure then medical intervention other wise medically untreated, cause not investigated
4) Emergency gall bladder removed, prior years of sx went untreated, cause not investigated
5) Anxiety - untreated, on antidepressant but still a major sx, cause not investigated (pattern of feeling anxious if skips meals), unresolved leads to feeling weepy & apathetic.
6) Depression, treated with Zoloft, feeling sad etc very rare sx, anxiety chronic see above
7) Chronic reflux - self treated, dx sx of anxiety/depression
8) Plurisy - dx common cold, caught late by ER,
9) Trouble breething - dx smoker cough & anxiety, she's never ever smoked, ER shadow on right lung early pneumonia
Absolutely everything has been dismissed as being anxiety and depression related, until she is at the ER and in crisis, only then has the medical reason been discovered and thats after years and years of having sx that have been passed off because she has a long standing dx of depression. Now i believe she has had enough 'real' medical issues to think her depression/ anxiety could be secondary, caused by something like an undx adrenal/thyroid issue, possibly auto immune, even lupus. She's not a worrier but sometimes its obvious that her fight or flight is on over drive, even menapause sx was not addressed because she couldn't tell the difference. It makes so much sense to me that there is more going on than depression/ anxiety that isn't being resolved by the taking of antidepresants.
Ok, genetic link maybe, my little boy was dx with anxiety, specifically panic attacks at the tender age of 4 and has been on Tofranil ever since so thats 8 years now. To be clear here, when we removed the foods he reacts to, the sx of panic attacks disapeared, it took years before any dr took the causation seriously, he's even still on the same dose he started with. After about 6 years of being panic free he ate his birthday cake which had more than a few ingredients he hasn't eaten for years. Within hours he's again describing those old feelings, and was drenched in cold sweat, sweat running down his back, chest and his hair dripping wet, clammy, heart visibly pounding, disorientated, needing to be close to mum, huge pupil's, excessive urination and feeling shaky and strange.
Long story sorry but i find it rather interesting that from oldest to youngest there is a common recurring theme, anxiety and depression is quickly dx even when there is a heck of a lot of 'real' evidence that points towards anxiety and depression being secondary to the medical issue that isn't being addressed or treated. I have no issue at all with anxiety or depression, they should be treated medically pronto! What i do have issues with is treating anxiety and depression and the medical complaint is still unresolved, shouldn't that be a red flag. If the primary cause IS anxiety or depression wouldn't the presumed phantom sx disapear or am i barking up the wrong tree with my way of thinking?
Ohhh brother i wrote a novel, whoops sorry!!! :-)
Cheers........JJ
I have to apologize that I didn't read through every post on this thread, but not only do I want to thank Quix for researching this topic, but what really stuck out in my head was:
"if you agree there is some underlying depression or anxiety, then treat it and see what is left."
I'm sure that many of us have gone through this. Are we crazy, are we not??? It's very hard to be in limbo and not know if we are really suffering from anxiety/depression or not?
Recently, after a year in limbo which was preceded by a very long streach of chronic daily headaches, the only advise I can really give is do not give up. And really, really listen to what the people who know you best observe. If it weren't for my hubby, I would have never gone for a sleep study that discovered three separate sleep disorders, which was an obvious cause of my horrifying fatigue.
And, I think "doctor shopping" is a good thing. Find someone that will listen. We all deserve that, despite the dx.
Love you all.
Heather
WOW!!! WOW!!! WOWWWWWWWWWWWWW!!
THANKS FOR THE AWESOME ENTERTAINMENT!!! I SUCKED UP EVERY WORD, NOT A DROP LEFT!! lol
I BELIEVE EACH ONE OF US HAS A NATURAL INNER VOICE THAT MAKES US AWARE THAT SOMETHING ISN'T RIGHT.
TOO OFTEN WE KNOW SOMEONE WHO "IS" A WHINER /DRAMA QUEEN,
THEY TURNED US OR OTHERS OFF AND WE DON'T WANT TO BE THEM SO WE STAY QUIET OR IGNORE OURSELVES.
WE NEED TO LISTEN TO OURSELVES MORE AND QUIT PUTTING OFF MAKING THAT APPOINTMENT, BECAUSE "IT'S PROBABLY NOTHING" ,OR FEAR OF BEING TOLD SO. (ME)
I HAVE KNOWN SOMETHING WASN'T RIGHT FOR THE PAST 2 YEARS OFF AND ON. I WENT THROUGH 2 YEARS OF PURE HELL DURING THAT 2 YEARS W MY HUSBAND. I WAS QUITE SURE MY NURVES WERE SHOT .
I WENT TO MY FAMILY DOC AND TOLD HER HOW I WAS FEELING AND ASKED
FOR AN ANTI- DEPRESSANT AND A REFURAL TO A THERAPIST.
I'VE ALWAYS BEEN VERY HEALTHY AND STRONG, BUT I KNEW I WAS AT A PLACE WHERE I NEEDED HELP TO COPE.
I SAW THE THERAPIST A YEAR AND WAS OK, SO WENT OFF THE PILLS.
ALL ALONG THE WEIRD PAIN ON MY LEFT SIDE THAT CAME AND WENT, I CHAULKED UP TO WORKING TOO HARD.
UNTIL LAST MONTH THAT IS, THE BOTTOM FELL OUT OF MY BUCKET AND I HAVE TO ADMIT "I AM VERY SICK" I GUESS GOD HAS A REAL GOOD WAY OF GETTING OUR ATTENTION SOMETIMES WHEN WE WON'T SLOW DOWN LONG ENOUGH TO LISTEN!! LOL
I HAVE LEARNED SOMETHING GOOD ALREADY... IT'S OK TO REST AND LET THE RESPONSIBILITY REST ON OTHERS IN MY LIFE FOR ONCE. I'VE BEEN THE ONE TO "MAKE THINGS HAPPEN, OR THE FIXER UPPER..." NOW I CAN'T SO I DON'T HAVE TO. I'M SICK ENOUGH I DON'T MIND HOLDING STILL.
I'M READY TO MOVE ON BUT IN THE MEAN TIME I HAVE DECIDED TO ACCEPT
ALL THIS AND ENJOY THE VACATION FOR NOW
IT WOULD BE NICER W/OUT ALL THESE SYMPS, BUT THEN I WOULDN'T BE SITTING HERE WOULD I.... LOL NiCee
Horsefeathers! Your neuro is a stinker and needs to be replaced!
My neuro thinks that anxiety is what's causing my elevated heartrate and shortness of breath on standing, or sitting upright from a reclined position.
Needless to say, I need a new neuro!
Hi Quix,
Thank you for your post!
I have been in the medical field for about 28 years also as a medical transcriptionist.
In 2003 when something reared its ugly head for me I was truly totally healthy except for occasional migraines.
After my initial episode of right-sided body tingling and severe numbness leading to TN when I first saw my neuro it was "stress/anxiety/worry." Also he said I needed to change professions as being a medical transcriptionist could be my problem as well.
I went back a couple days ago because I had not seen this neurologist in about 2 1/2 years it was "I told you it is not MS, its stress/anxiety/worry." He basically told me to stop shopping around for doctors and that the wrong doctor could "hurt me." I told him that everyone has stress.
Only we know our bodies and when something is terribly wrong. I absolutely dreaded going back to this neuro but all the doctors in my area are in this one particular practice.
(They do not know us) and could not possibly differentiate if we are hypochondriacs or not.
I have always been an extremely positive person and still am. I've tried the whole get over it scenario but it just does not work.
What it is that the doctors are afraid of by not openly talking about this with us? If they would just "talk to us" instead of making us feel like we are crazy, depressed, and stressed out.
Neuro suggested physical therapy, Effexor, and he increased my Neurontin this office visit but if I have no neurological issues, why doesn't he just dismiss me as a patient and send me on my way to a psychiatrist?
Thanks Quix. It is nice to hear your professional/personal take on this post.
Tj
Hmm...I've been in and out of the fight/don't fight struggle lately. Y'all may have changed my mind yet again....
Keep talking.
Wow, what a thread! I'm surprised I messed this one...
I was blessed by having a cool Neuro, who, in front of my hubby and all, said "this is all very real. You don't see me handing you a referral to a psychiatrist" Of course, if he did, I would go to the shrink, anyway, to prove I'm OK. This was all at the beginning of my path to diagnosis.
I've been in and out of depression since I was 10 years old, and my best way out was talk therapy. I've never taken an antidepressant, and when things get a little dicey upstairs, I have only to phone my therapist, and just a few sessions get me straightened out and coping. I'm actually amazed I haven't had any major depressive episodes since my diagnosis, or with the addition of Rebif. Hmmmm...Knock wood!
Cheers,
Guitar_grrrl
Hi there.
Just want to say that I've been active in this forum since October '07, and in that time there have been far more than a few members who have graduated from limboland. Several dozen at the very least, most of whom have gotten an MS diagnosis. We've had a fair share of others who have learned they have MS mimics, from Lyme disease to B12 deficiencies, and even cancer. We've also had a small number whose problems were indeed psychiatric and they agreed with that assessment.
Unfortunately there's no way to do an accurate count without going through every post, and that would mean thousands of hours of reading. Quite a lot of members no longer post, or post seldom, but that's the nature of the beast, I guess.
Still, I think my diagnosis estimate is very conservative. Don't give up trying.
ess
former limbolander, diagnosis Jan. '08.
Sorry - hit a wrong key and posted before I was finished.
Anyway, if I suffered from anxiety as bad as he said I did, I'd need to be committed, and I certainly wouldn't be able to function well in society.
I'm finally going to get to see an MS specialist Tuesday. She has a very good reputation and is on MS Society board. I've heard that she really listens and wants to help people. I sure hope so because neuro #1 certainly left me with doubts and a lot of dissapointment in the medical profession. He made numerous mistakes in his notes - including sending them to a doctor I don't even see and saying he was waiting on reports from other doctors that he never sent me to. The entire experience was a nightmare, and meanwhile, I continued to have flares, and now I have to use a cane or walker most of the time.
Limboland is a terrible place to be! I've seen were a few on here have finally gotten a dx after many years of living without answers - so there is hope.
Thanks to everyone who posts here - it's certainly comforting to know I'm not alone.
Cassrox
Hi all,
It's been awhile since I've posted. I mostly read and find comfort in the comments of others. But Quix's points really hit home for me. My first neuro seemed to be more interested in dismissing my symptoms as "all in my head" than he was in trying to figure out what's really wrong.
I know my body, and I know how it reacts to stress - and I know that anxiety is NOT what's causing all my problems. Sure, especially the first couple of times I had a flare, I was definitely scared, but I think neuro #1 got it all backwards and said that stress was causing the sympto
I am dumbfounded that these threads are coming up after I just experienced this yesterday. I am going to read all the replies tomorrow written here. I feel in my heart that my lower extremity symptoms are coming from my cervical injuries and I want the surgeon to admit that just becuase I dont fit into the 90% percentile of degree of cord compression in my neck or thoracic region that it is still possible to have muscle weakness in your legs. And by the way does anyone know CAN YOU FAKE HYPERREFLEXIA IN THE KNEE??? Thats what i'd like to ask the surgeon and neuro and also I am going to ask "Please show me the medical text book or journal that quantifies cord compression" "How much cord compression does it take 2%, 5%, 10%, 20%,30%, what does it take to cause lower extremity weakness, cause I sure as hell want to know". Are we all the same, do we all have to have the exact same amount to experience myelopathy or are we individuals with individual spinal cords and varying degrees of tolerance to comression!!! God im pissed.
missy
Wow , thank you for posting this again! It has been very helpful! I am still wondering what or where I should go with this. I know my body, I know that, it would not be caused by this disorder. I thought, that if you had tests and they come back inconsistant, then isnt that a red flag that there is a problem??? I dont know. I am still fuming.. But you know what? I am going to take their stupid meds, for the month they told me, and see if it works... I am desperate, willing to try anything.
I saw one of the nuerologists in the hall last night, and I asked him what I should do about the physio therapist. She saw me yesterday, had great concern over my numbness, and weakness on my left side, and wanted me to stay another night, just to retest it in the morning.
Well, when I told the nuero that in the hall last night, he flipped, and said "well, I don't know how your gonna fake your way outta that one, but, do it and get out, so you can go home"
WHAT?!?!
I am shocked.
I also asked him why they didnt come to see me yesterday, ( he was supposed to discharge me yesterday) was because "we didnt have time"
WHAT!?!?
I just dont know where to go from here. It has knocked me to my knees.
But, this is a great post. Thank you for bringing it back, so I could read it. I know I am not alone, it helps to know there are people out there, that are and have felt the same way.
Love, Shari
The past week to ten days we have heard this dx a bunch of times around here, including my GI doctor telling me my throat and chest pains are a byproduct of anxiety. Thanks for digging this one out for all of us to reread.