This is such an appropriate and well timed discussion. You seen to get it right at just the right time!!!
I had a cussion with my PCP on the phone yesterday when she called to let me know that the neuro called her to discuss my renal u/s results and the MS dx. Anyway, she brought up the old neuro who I was seeing last year who sent her a letter stating that I had "probable conversion disorder". She laughed and asked if I would like her to let him know that I've been dx with MS and am starting treatment very soon. Oh, if I were a vindictive type, I'd love to have her throw that in his face.
His putting the suggested CD dx in writing was not only emotionally hurtful for me, but it also hurt me physically especially when he wouldn't even help me when I had that exaccerbation last November. I had to go to someone else for help. He must have thought I was converting stress and anxiety issues into physical symptoms again, unknowlingly of course since that is typical of CD patients.
Thanks again for bringing this discussion up. It will be interesting to read other stories from our members.
It goes back even further to Hippocrates.
I apologize ahead of time for the length of this post, but I feel betrayed, embarassed and that my relationship with my new neurologist has been breached. I no longer feel conformtable telling him any symptoms I may have from this point forward. I wasnt going to post it but when I read Quix's post I started crying again and decided to forgo being embarassed and just post it.
The reason I wrote you this email is I was so upset I got off the phone with my neurologist yesterday, and we were discussing my case and what we were doing next. When he said "You know at some point we have to think about ANXIETY being the cause of some of your symptoms" Aslo used the "Psychosomatic term".
I cant tell you how upset I am. I have just lost faith and trust in him. I feel as if he as breached our relationship even though it has not been long since im seeing him. I no longer feel I can talk to him or see him and report any type of symptom of anything. Let me just try to give you the facts of my case:
Fact: C5/6, C6/7 cervical herniations, C6/7 nerve root compression, C5/6 spinal cord compression.
Treated repeatedly with steroids orally, epidurals, nerve block, and trigger injections pretty good results thus far
However steroid wear off as we know.
Fact: Degenerative Disc Disease in cervical area
Fact: Cervcial spinal stenosis and foraminal narrowing
Fact: EMG states C5/6 C6/7 radicular pain related to cervical herniations
Fact: EMG confirms bilateral carpal tunnel syndrome
Fact: T7/8 (thoracic) disc herniation, mild compression on spinal cord on right side
Fact: Degenerative Disc Disease in upper and lower thoracic area
Fact: L5/S1 herniation, EMG states chronic L4/5 nerve root irritation.
Fact: Brain MRI without contrast (1st stupid neuro, who called me stupid 4x) several punctate T2 hyperintensities
in the periventricular white matter maybe related to migraines.
MRI - No lesions in Cervical or Thoracic MRI supposedly. I have no faith in how anyone reads these films really.
In December I started developing paresthesias in my foot, then eventually right side of genitalia and then left. Then left anterior thigh. This all happened over a period of about 3 months.
I started to develop extreme lower extremity weakness, started once when I was in the store and had to sit after about 20 minutes felt like i was standing 3 hours. Then about a week later I suffered extreme leg weakness to the point of not being able to stand more than about 3 minutes. I progressively got better over about a month and a 1/2. I actually had a cane for a while. I got totally better from the waist down by the end of April and could have done a cartwheel. IT CAME BACK AGAIN 1 AND 1/2 WEEKS AGO, I LOOK LIKE A CEREBRAL PALSY PATIENT WHEN I WALK, MY LEGS ARE STIFF, SPASTIC AND SOMETIMES CAN BARELY HOLD MYSELF UP. I IMMEDIATELY WENT TO THE NEUROLOGISTS OFFICE AS HE HAD NEVER SEEN ME LIKE THIS, BECAUSE I DIDNT KNOW HIM DURING THE FIRST "ATTACK" for lack of a better word.
I was just seeing my 1st surgeon who misdiagosed me with cauda equina syndrome (which is compression of the cauda equina - nerves in the lumbar/sacral area) that control down below- legs, bowel and bladder, etc. - MISDIAGONOSED L5/S1 second and 3rd opinion was herniated but not pressing on any f***ing nerves. He had the surgery scheduled and everything, it started getting better and finally got better after about 5 or 6 weeks.
I have had facial numbness a few times one sided, cognitive difficulties ie word finding problems, studdering at times from it, memory problems, SO
I went to another surgeon who laughed bascially at that dx of the first surgeon and said this is not cauda equina syndrome, there is something else going on. Lets r/o other things. Sent me to a neurologist who did one MRI on my brain, and called me stupid 4x for not going to the hospital when I couldnt walk. never saw her again. So I never went back to that surgeon either.
So I decided to go to a neurosurgeon for my neck and to see what he thought about the lower extremity weakness and paresthesias and if they were related to my cervical injuries. Also told him about the word finding problems etc. He sent me to a much nicer neurologist about 1 month ago. He has been testing me for MS (which he thought I had, lymes (although im not sure he sent to a good lab), b12, thyroid, etc.
So now that everything is coming up negative, also EEG negative. They are going to do one more brain MRI with contrast (cause the first nasty neurologist didnt event do w/wo contrast) and a a special MRI that takes pictures while you are in cervical flexion/extension to see if my herniations in my neck are compressing my cord further as I flex and extend. Have to get approval for this, we'll see.
So while my injuries are not disputed the neurosurgeon says "Well yes you have all this in your neck but 90% of people with your neck dont have this severe muscle weakenss in your legs" (This can be caused by cord compression, but apparently I dont fit into the 90% percentile. So he says "Yes its possible your neck could do this but um lets rule out everything else", which is when he sent me to the second neuro. Who as I said has done all these tests that come out negative. He still has the brain with contrast to do and evoked potentials which will probably be negative also. He has NEVER MENTIONED FIBROMYALGIA or anything like that.
So the REASON FOR ME WRITING ALL THIS IS I am so distraught over him telling me "Well at some point we may have to consider anxiety", "NOT FOR ALL YOUR SYMPTOMS OBVIOUSLY BUT FOR SOME OF THEM".
I BELIEVE THAT my symptoms in my lower extremities are being caused by my neck or by my thoracic herniation which neurosurgeon said is too mild (thoracic too mild), meaning the CORD COMPRESSION is too mild to cause the Lower extremity weakness. And from what Ive read from other people with neck injuries and they have lower extremity weakness, they are often told the SAME thing that THERE NECK IS NOT CAUSING LOWER EXTREMITY PROBLEMS, SO WHAT ITS IN EVERYBODYS FREAKIN HEAD???
SO THE NOW BECAUSE THE NEUROLOGIST CANT FIND ANYTHING ELSE, EVEN THOUGH IM NOT DONE WITH MY TESTING, SUDDENLY WE MUST EXPLORE ANXIETY FOR SOME OF MY ISSUES. I TOLD HIM IT IS NOT PSYCHOSOMATIC AND THAT HE IS MISSING SOMETHING. He said please dont get hostile with me, im trying to help you, im not saying it is, im just saying we have to explore that. I told him im not exploring anything like that. I was a psyche nurse for 4 years and I am well aware of what anxiety is and the somatic symptoms people come up with when they have panic attacks etc. I am aware that psychosomatic illness and symptoms do occur and they are very real to the person as the mind can create whatever it wants. THAT BEING SAID I do not have panic attacks or any of the accompanying symptoms of that. And my symptoms can be explained but the f-ing surgeons are too stubborn to admit that cervical injuries can effect motor skills in your legs, EVEN THOUGH WHEN PRESSED THEY WILL ADMIT IT.
And in conclusion its not like I just strolled in a md's office with no injuries and a ton of vague somatic complaints. I have real injuires in my spine. I AM BESIDE MYSELF with this, he RUINED my weekend, and i was crying so much, he has no idea of the pain I have been thru since October with all my neck and radicular pain, epidural, steroids, therapy etc. I feel he is trying to stigmatize me.
thanks for reading
And lastly the conversation with the neurologist he said "Ok you need another dx, you have thoracic radiculopathy". Like I dont know this, i can feel the pressure in my sternum all the way around the right side of my ribcage to mid back. It feels a bit like someone is sitting on the mid to lower sternum area of my chest. Not to mention the pain in the rib area. This is from the T7/8 (thoracic) herniation that is compressing the spinal cord, but Im not TO WORRY CAUSE ITS ONLY MILD!!
Hey Doc Q,
maybe tomorrow or later tonight I would like to add something but honestly, between thinking about this thread and the "Psychic Groans - Anxiety or the Real Thing?" thread combined with last week, I'm just out of words due to the yin & yang of elation and rage.
heck, i've already started ...
in a nutshell, the MS dr sent me info on 4 DMDs for me to read up on and choose one. we'll discuss that when i next see him at which time he has ordered new MRIs of brain and I think he menioned C-sec. you may remember the last set was at a 1.0T strength. i asked him if the strength would be higher and he said no. i'll give benefit of a doubt but maybe he needs it at 1.0T due to the last set was at 1.0T and he'll use this for his time & space criteria on brain lesions. and of course [their ]radiologist will read it, not the local ones here. you may remember the .7T & 1.0T both returned via radiologist impression as "demyelinating disease". their radiologist should be better at the MS reading. but this the VA.
saw my local neuro yesterday. an ok meeting. he is leaving all diagnosis up to the specialist. so with that type of situation, seeing him is basically a place holder. therefore now, i don't get so frustrated with him as it is useless. he only wants to tell me in no uncertain terms that it could be anything, their way of putting off any diagnosis from my perspective. he doesn't talk about my timeline or the MRIs stating the demyelinating disease, never. if this was not the VA then that would be really odd considering what i've read on this forum and the need for certain criteria. he seems to be so perplexed that i have >5 o-bands. i'm just as perplexed as to all the symptoms i've had on/off over the years too. if they really wanted to get to the root cause wouldn't they prefer to order the 3.0T scans and quit wasting time with the 1.0T? any doctors on this list want to explain that to me?
how do you give someone DMDs without a diagnosis? is that like giving chemo to a veteran patient without cancer but it satisfies the law of treatment for the VA's unknown illness? i'm not trying to be funny either.
the bummer tonight is a feeling of what a fool i have been to have believed thise org all these years and try it their way. all the while having documented symptoms and a history.
there is a high percentage of MS in returning military personnel from the mid-east conflicts. bet you didn't know that. i've read a few of their stories and it would appear the VA treatment for vets with this type of illness always starts off with the long road up hill of "Hypo Chondria & Hypo Pyscho". it takes years to get past that stage unless one is in a wheelchair, bedridden or dead, at least in the VA system.
you know, not one of these doctors has mentioned that demyelinating disease(MS) causes depression but one of them was concerned about the other 3 DMDs and me taking it. due to a side-effect of depression. they don't mind mentioning i've had bouts of depression but never once mention MS or the original med statement on my medical discharge as "depression secondary to chronic pain".
for those who don't know, the wording on med reports in the military and VA is incredibly important. it makes a big difference between how you are treated personally and medically.
you already know my history with the VA and their love affair with
"Hypo Chondria & Hypo Pyscho". my other posts have commented on it a few times.
hmm, i wrote more than i intended. guess i needed ot sound off a bit and also spell check a lot.
happy & peaceful weekend to all,
I see that this is a painful subject. Sometimes we all need to vent.
Yes, I know about Hippocrates and all, but we have rid ourselves of all the other ancient notions of having bad "humours" and various stuff. Freud legitimized this for modern times.
Missy, I can just hear your anger and frustration. I gues these doctors aren't listening to themselves when they say, "Well yes you have all this in your neck but 90% of people with your neck dont have this severe muscle weakenss in your legs". WELL, THEN that means that 10% (one in ten) DO have this weakness with your amount of compression. WTF??? Did you ever hear of the Bell Curve?? Some one is out there on those extreme percentiles! Arrgghh!!
U2 - I cannot believe that you are getting repeat MRIs on another 1T machine!!! That sounds like the VA's way of guaranteeing that you don't show any more lesions!!! How do you live with this frustration??
exactly, that is exactly what it sounds like. i'm glad you posted it for the world to see. i hope it helps other vets to see this for what it is.
how do i live with it? i do not really know. part of the reason i'm a bit bummed today is i'm elated he sent me the DMD list to choose from but when he told me 1.0T, i knew their intentions then. your comment coincides with my gut intuition too.
the local neuro couldn't give me a consult for an outside psych doctor to speak to. i told him i wouldn't see a VA one due there was no reason to trust him/her. anyone blame me?
i don't want to quit until i see this through i suppose. i can always come here and vent to some degree. i laugh and joke about it all but there is a real serious underbelly to all this that presents a high degree of frustration. lucky i can still work out a little and have a couple of friends who understand.
I'm sure I have mentioned before the Internal Medicine Specialist (female) who told me all my symptoms were in my head. There was no such thing as fibromyalgia. And my stomach acid was from eating the wrong things, and my neck was from reading too much. Yeah, right. Walked out of her office and never went back, after a 5 year relationship. 2 Neurologists diagnosed me with fibro, as well as a rheumatologist, ended up with C4-5 disc removal and fusion, and laparoscopic nissan fundiplication for GERD, one of the highest levels of acid ever measured by the dr who invented the surgery. All in my head???? Seems to me if the dr can't, or won't treat the symptoms or find the problem, they blame it on the pt. Oh well, soon we'll all have national health care, and that will solve all our problems!! (yeah right, what are they smoking, LOL)
Decided to share one of my private fantasies publicly. All I need is the financial backing, and for years I have dreamt of opening my own medical school, starting to change from the outset how doctors are trained and the ethos of medicine as it is. I know exactly how I'd go about it, tighten up the imaginary business plan regularly. Q you would for sure be on the clinical directorate, if not co-principal. Think of the thousands of lives that would be saved if medicine was taught in a humane way and the culture of the hospital and primary care overhalled in favour of putting the patient first.
Studied nursing, studying law, have a business background, been ill for a very long time. If the last issue was to disappear and money come my way this would be my life's work.
Also want to collate a collection of short stories/real life experiences of patients in health care, you probably know I love writing and have an unpublished book (fiction) gathering dust from years back because I never did anything with it. Want to use my writing as a way of sharing our experiences with the world.
Re other post you know all is dependant on how and if I get through the coming weeks, but up to my last breath I can dream.
The history of western medicine is very intersting. It's women who get the short end or the stick mostly (I know there are many men suffering here too), but medicine was never designed for women. It was about getting the working class man back to work. In the UK it has been less than 60 years or so that women were entitled to health care at all. Now our problems are still trivialized. Example - urinary retention. Men - look at the wealth of research and efforts to cure prostate problems; women - trreated as hysterical and those who research into the causes sidelined by medicine. Like all the great people in history, their findings are always laughed off by their peers, until long after they have gone.
True hysteria is RARE. RARE. And the sufferer now would be easily identified by the tests we have available now. Making a diagnosis before getting all the facts in? Sometimes refusing to accept the facts as they don't fit in with the prejudices of the doctor? The wishforchange medical school would terminate their licences to practise until they have retrained.
If I live through this. Will do it. This life has to have been for a reason. May not live long enough to fulfil it, but have all the right background. Money will become available, will make sure of that. Somehow think people who have may be willing to sponsor such a vanture, we've all been at the sharp end of our current system.
Aside from being super tired all the time (the fatigue has reappeared wtih a vengeance), my symptoms are mostly sensory. Being tired is of course from my lifestyle and baby... no matter that i still feel this way after 10 hours sleep and by mid morning...
And these are self-reported symptoms NOT clear Clinical Signs that can hit a MD in the face. So of course these symptoms can be ignored and just put down to other things...
Am too scared of being brushed off to bring this up again with my drs... will let them focus on the stuff they have diagnosed and are comfortable dealing with... so at least they'll give me the time of day.
Like having appendicits for 3 months last year and no-one taking my reports of pain seriously because I was pregnant and it is normal for pregnant women to have abdominal pain.... The top gastro at the hospital is the one who didn't examine me, but gave me a metaphorical pat on the head and told me to come back for a checkup 6 months later - after the baby was born. Only when I couldn't walk from the pain did my Obe insist on exploratory surgery and did they find the appendicitis. So it's not just neuros that need to be roasted!!
Geez! I do have a chip on my shoulder over that one! Still!
So what? Live with it and pray and hope that it will never get bad enough to really get a proper diagnosis of anything other than I already have.
Or that they may just pick something up incidentally when checking something else (can probably get myself another MRI scheduled for the pituitary adenoma if I play up the visual symptoms some more...)...
Proud and long term member of hyper-gamma-chondria.
I am convinced it's all in my head!
Now that I have been diagnosod with MS, there is a part of me that woudl wants to go back to the idea that it is all in my head. I know that sounds strange.
Over hte past couple of months I was starting to believe the first neuro I had who made a snap jugdement in my case thatI I had conversion disorder. Oh, he was trying to appear as nice and caring as he could when he "reassure" me that he didn't think I was faking and that the symptoms are real whatever that is supposed to mean. But that judgement before he truly knew me really affected the care I was getting from him.
Looking back over the past year when everything went south health-wise for me as well as recalling "events" that are probably related that have been going on for years, I now realize how lucky I have been with these doctors. While my first neuro was on this CD path, thus not runnig appropriate tests, inevitably another doctor would step in and do what he wasn't doing. Those doctors included one of this neuro's colleagues who is the head of the practice he is in and the chief of neurology in the hospital that I spent 3 weeks in last year. The next was the neurosurgeon the bad neuro sent me to for a consult. Then bad neuro wanted a 2nd opinion and sent me to a former professor of his who specialized in MS and that guy stepped up to the plate to help me and was the one who finally diagnosed me.
So, sometimes we are just plain lucky and get someone or a series of someones who will go that extra mile for you so you can get some meaningful help and ultimately a diagnosis.
And, just because I finally do have a diagnosis doens't mean that my days of being seen as a "conversion" case or stress/anziety are over. I'll be ever watchful that no one puts me through this frustrating and upsetting experience again unless my problem is truly anxiety or stress.
I'm less concerned with what's in my head than I am with what's been vanishing from it.
If it weren't Sunday morning and the rest of my day not fully scheduled, I might challenge some of you for the longest rant award on this thread.
God be with each of you. May Memorial Day remind each of us to count our blessings, even though our doctors may be counting sheep.