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lesions being ignored - psychiatric consult suggested

For almost 2 years now I've been experiencing classic MS symptoms... numbness, tingling, banding, l'hermittes, brisk reflexes, fatigue, and most recently, constant muscle spasms in lower extremities, hips and tiny neck spasms that cause painful hard knots to form and then disappear.

My latest MRI shows no change since Oct. 2010.....still shows around 12 small, deep white matter lesions (largest is 4mm...6 are about 3 mm and the remainder are smaller).

I also have marked brisk reflexes on record, r. hand tremor, l'hermittes sign, positive ANA, positive ENA and a platelet count that's been low consistently for 8 years now.

I saw a dr. yesterday to get the MRI results and see about getting some med's for the spasms. After asking for a list of my symptoms, this dr. asks me if I've ever heard of 'somatization disorder.' She then firmly tells me that she would like to refer me to a psychiatrist for evaluation and she strongly suggests that I agree to this....despite the fact that she does acknowledge that there ARE lesions on my MRI.  

My initial response was to say 'no'....but then suddenly I thought, 'what the heck' maybe I can clear this 'psychosomatic' label from my chart...I've suspected for some time now, that many doctors I've seen have suspected that my symptoms are in my head.

Anyway, I've agreed to see a psychiatrist for evaluation and and I'm trying to remain confident that perhaps this will help me to be taken more seriously and not work against me...has anyone else here had experience with this?

What makes me angry is that instead of sending me to a neurologist or booking evoked potential testing or perhaps a lumbar puncture, (which actually might help provide a diagnosis) this dr. sees it more beneficial for me to see a psychiatrist....?? Very frustrating not to mention, demoralizing.

I would love to hear how others who have experienced the same have dealt with this. Thanks in advance for any responses....this is a wonderful group here...I'm so impressed with the level of help and caring.  
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Avatar universal
Just wanted to offer an update on my situation....you've all been so helpful.

I finally saw a really wonderful new neuro last month who validates everything I've been experiencing. He acknowledges that my neurological exam definitely indicates a  problem; babinski sign, abnormal gait, brisk lower reflexes, loss of sensation. He indicated that the report from my family physician specifies 'anxiety' as the suspected root cause of my symptoms, but he told me  that in his opinion, he has not yet met a patient who isn't somewhat anxious when they see their dr. and that a good doctor knows how to factor this in. He also told me (off the record...of course) that the 2 previous neuro's I saw were two doctors that he himself would not want to see if he had a neurological problem.

He concluded by saying in his estimation I either have a spinal tumor, MS or a 'cellular disease' of some sort..that would likely be 'very serious'....not sure exactly what he meant by that. I got the sense he was leaning mostly towards MS. I'm having another MRI of my lumbar spine next week to rule out a tumor and to check for lesions.

I left his office feeling incredibly relieved and assured that  there is now no need to see a psychiatrist to be evaluated for somatization disorder.

My latest symptoms which I suspect are related, started about 2 weeks ago are extremely loud pulsating tinnitus in one ear, episodes of vertigo so bad I cannot walk without falling, numbness and tingling across the same side of my face and ear area, extreme tooth sensitivity on the same side and wierd little electric-like shocks on my face. Just wondering if anyone knows if this would be something consistent with MS. I've actually had mild tinnitus in the same ear for the past 8 years or so which started with pregnancy....bit never this loud and never with this level of vertigo or tooth sensitivity.

I'm thinking if this is related to the other symptoms, then it would likely rule out a lumbar spinal tumor....?


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Avatar universal
Bob...thanks again for the great advice. Indeed, my first MRI stated that although demylination couldn't be ruled out, the lesions were more in keeping with small vessel ischemic disease than anything.

When the nasty neuro I saw told me that for my age, 15 lesions were perfectly normal, I tried to tell her that from what I had read, only 30% of people over the age of 60 would have 'some' lesions....she kept insisting that 'those tiny little pin-***** sized' (lesions) meant nothing. In my latest MRI, it is stated that 6 of the lesions are in fact over 3mm, with one being about 4 mm...no doubt, these lesions are not HUGE, however 3 mm IS larger than a 'pin-*****' in my estimation.

RE: the issue of spinal lesions ...my latest report states: "There is some motion artifact on the sagittal PD sequence but I do not see any definite true lesions within the cervical spinal cord."....so yeah, I guess that speaks to difficult with clarity due to movement and such.

Supermom...OMG..sounds like you had an even meaner, more hostile neuro than I.....It's really difficult to understand where these people are coming from isn't it?...I mean, If you've reached a point where  you hate your job that much, it's likely time to move on...

Sounds like you've been through the ringer yourself...so sorry to hear this...sounds like your sense of humor is intact though...I think that's whats been getting me though....the ability to laugh at the craziness of it all!

crwriter...so sorry to hear that you've also been to hell and back with experiences with callous dismissive dr.'s.

Ovieloverinla...Yes, I've been tested for lupus as well...At one point I did have a positive ANA, but it still wasn't consistent with lupus...but I do also have some symptoms, like sporadic, migratory joint pain that suggests something like lupus. And yes, more and more I am seeing the merit of seeing the psychiatrist. Thanks so much for your input!.
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Avatar universal
It wouldnt hurt to see they psychiatrist, he could clear your mental health, then you could advise the doctors not to dismiss you!

I have been on this MS "merry-g-round" for about 6 years now.  First neuro was great at first, but became dismissive when why MRI showed no change and my spinal tap came back clear.   I should note that he put me on Betaseron and Copoxane, so maybe that stopped any new lesions from forming?! I stopped seeing him when he told me that he couldnt tell me what was wrong with me and that I should take vitamins and exercise.

Neuro #2, slightly better, but is also stumped, I am seeing an infectious disease specialist on Wed to rule out anything viral.  The Optomitrist found and issued with my left eye that he says is indictive of Lupus or Vasculitis, but I have been tested for Lupus for times with a negative result each time!

I am beyond frustrated, I just see myself getting worse and nothing is being done, hopefully I will get an answer soon!

Best of luck to you!
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Avatar universal
Oh geesh.  Now some of what I have been through makes sense.  I was falling and exacerbating annular tears from a seatbelt accident.  So I went to ers not for falling, but for the excrutiating pain in my back preventing me from sleeping enough.  It gets really really bad when I lie down supine and it would wake me up before I got enough rest.  I slept only 3 to 5 hours every other day.  By the time I put my affairs in order last year, my BP was bottoming out and I was preparing to die.  My son was the only thing keeping me going.  He is 33.  I finally realised last October, after my sixth and most severe fall, that perhaps the falling was exacerbating my injury.  I believe I was right, because although I still wake from pain, I can sleep enough to feel rested.  Neurontin and Flexoril are what I take before bed and also help.  But they were throwing me out of ERs and my best friend of 30 years convinced me to seek help elsewhere.  Took him years though.
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987762 tn?1671273328
COMMUNITY LEADER
Wow it sounds like you were type cast as a 'head case' (said only with affection from a fellow none head case lol) the hostility is something that I truely dont understand the logic of. I know neuro's are taught the 'red flag' concept of distinguising psychological health from physiological health by the simple theory of if a patient is annoying you its psychological (I kid you not) but half the time they are already annoyed before a patient even says hello, so the doc's state of mind is irrelevant imho. That theory is totally flawed because neuro's are after all only human though some may need reminding of that fact sometimes. lol

I just remembered neuro 2 said the way I walked, reminded him of a neuro patient he saw 20 years ago, which is why he continued to test my left leg but the reactions he got from me, were not the same as hers, thats what a 100% acurate memory from a patient he recalls from 20 yrs ago lol. so on the one hand he was aknowledging It was abnormal but because my reaction was not what he expected, then it couldn't be what she had, so therefore it was nothing. Do you get the logic of that one cause i sure dont lol I sort of expected him to be diagnosing me from my clinical signs and symptoms, not trying to fit me in to some preconcieved idea, sort of explains why he ignored all the answers and clinical signs that didn't fit in with that idea lol

I took my dh with me too, he was yelled at when his automatic reaction to me falling flat on my face, was to rush to help me, he was told to just sit there and not interfere so he didn't speak up even when he had pertinent information lol Neuro basically told me to shut up, he aggressively said I needed to only answer the questions he asked without explanation. Sorry but does that mean if he didn't ask a question about something then it doesn't exist or it isn't relivant, maybe thats why he told me my eye sight had nothing to do with him and he didn't want to hear about it. lovely chap! lol

Ahhhhhhh i'm PMTing so not a good topic to get in my head space, though justifiable anger is supposedly a health emotion ROFL!

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

PS I hope it doesn't take too long and it doesn't cost you too much


Helpful - 0
1453990 tn?1329231426
OK, this is a case where serial MRIs might help.  

Last March, at age 48, I had Optic Neuritis with ONE MRI lesion and an abnormal VEP.  One lesion by itself might be aging or migraine,  but in the context of optic neuritis....it was more likely to be demyleniation.  5 months later, I had an attack of Trigeminal Neuralgia.  A month later, my MRI had 5 lesions.  It is not likely that age related microangiopathic ischemic disease (age and or disease related clogging of small arteries preventing oxygen from getting to parts of the brain) would advance at that rate.  When you look at the clinical picture, the symptoms and the serial MRIs, it makes a good case for advancing demylelinating disease.

So, in your case you should consider asking for an MRI in 6-12 months for serial MRI monitoring.  If you do not have hyperlipidemia and/or untreated hypertension, your chances of having microangiopathic ischemic disease are pretty low.  With your numbness, tingling banding and lower extremity issues, an SSEP (sensory evoked potentials) test might also be valuable.  Banding and bilateral lower extremity symptoms point towards possible spinal lesions.  Lesions in the spine have this nasty habit of effecting both grey (motor horns) and white matter (sensory horns) in the spinal cord.  Current technology limits makes the clinical detection of spinal lesions more likely than the detection of spinal demyelination by MRI in RRMS.  

"Due to the small cord size, high spatial resolution is needed on MRI. The mobility of the cord is a problem, and surrounding tissue as well as CSF pulsation and cardiac or respiratory motions can cause artifacts, which sometimes unpredictably can reduce image quality. Spinal cord imaging has improved considerably with the use of phased array coils, and recently parallel imaging has improved time efficiency of cord MRI."  
CHAP 7 - http://www.scribd.com/doc/8817608/MRI-Atlas-of-MS-Lesions

Bob
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Avatar universal
Thanks to you all.....you all offer great comfort and sound advice.

Supermom....I had a similar experience with a neuro I saw in the urgent neurology clinic. She entered the room already absolutely hostile towards me (I'd been referred from emergency and she was clearly angry that I'd landed on her patient list). She refused to listen to my symptoms, spoke harshly to me and rolled her eyes when I had difficulty answering her questions in as concise a manner as she wanted.



My husband who was with me, at one point had to ask her to 'please calm down' as she was almost yelling at me.....I was so out of it at the time...sitting there like a limp dishrag I was hardly in any position to really recognize or care what was occurring, let alone defend myself against this woman. I've since filed a complaint with the medical board and am awaiting an answer...don't suspect much will happen other than this Dr. becoming aware that one of her patient's refused to take her abusive treatment.

In the end, she concluded that the numerous white matter lesions on my MRI were due to aging (I'm 47)...that essentially I had a 'normal' MRI and that I Did not in fact have neurological issues....despite the fact that a reflex test caused my right leg to go into a mini-convulsion, I required help to get up onto the exam table as my legs were so weak and I had visible tremors on the right side of my body.

So yes, I am beginning to see that a psych evaluation is probably the best thing that could happen at this point...In Canada referral from a GP can take up to a year...so I may even seek out an evaluation on my own dime to get the ball rolling.

In gratitude,
M
Helpful - 0
1218873 tn?1300091216
Just to add -
I was asked to see a neuro psychologist and at first I felt like you and then I thought what the heck I might as well. I was concerned that although I knew full well I did not have a psychological problem they may just right it off as that.

Well I could not have been more wrong the psychologist I saw was in absolute agreement with me she told what she was going to write, sent me a copy of the letter, and told them I was not psycho! (She was also a wealth of information, and spoke truthfully about the situation I was in, from here experience with neurology).

I have seen doctors since and although I have no Dx they cannot write it off as - Depression, anxiety, stress, chemical imbalance, functional or any other fancy way of saying it is a mental health issue, as I have a piece of paper that states I am not

PSYCHO!!!

I enjoy watching them stumble over this area.

Twist :-)
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1394601 tn?1328032308
Here is my answer to your doctor.  Find out what is wrong with my body and why I am losing strength.  Then this somatization disorder will disappear.  

I wouldn't waste my money.  Find a neuro on your own.
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Congratulations on being proactive and agreeing to see a psych, getting your mental health evaluated will help you on two levels. 1) if there is a mental health issue happening then you can get help for that, not unusual for someone dealing with a disease (especially when your in limbo) to get anxious and or depressed. If it was something like conversion disorder (which I highly doubt btw) you'd be seeing the right type of doctor and be helped.

2) The assessment would help exclude this mimic from the long list of mimics, and get your doctors looking for alternative explanations. It should lead to getting a full neuro-psych evaluation that will show where or if any cognitive changes/damage has occurred.

I personally know the frustration and injustice your feeling, been there done that, I even bought the t.shirt lol! First neuro found clinical evidence on exam, sent me for an MRI looking for MS. MRI found a chronic number of T2 hypertenses in my white matter and deep white matter but neuro told me the MRI was normal. Neuro 1 also said my cognitive issues were probably senile dementia ROFL i had just turned 45, also said my physical issues were probably psychological. When I stopped laughing, I called a psychologist and booked my self in for a full mental health assessment, nothing turned out to be wrong with my mental health.

I changed GP's, my husbands actually, he listened to my communication getting more disfunctional as the appointment went on and he saw my body do the weird tremorous rumbling, jerks and spasms. His initial thoughts were MS or motor neuron disease (ALS), since that first consultation he 100% believes that I have MS. He sent me to a private neuro to get seen quickly, ahhh it was an experience i wouldn't wish on my worst enemy, not that i have any but still wouldn't like it to ever be repeated on anyone.

Neuro no 2 had the MRI report but not the actual scans, the report made the point that the finding were inconsistent for my age group but still concluded due to not having a lesion in my CC (slam dunk MS location) that I had Chronic iseamic small vessel disease. Something commonly seen in 70+ age group, or with people with hypertension, diabetes etc other long term health conditons. None of which i have so the conclusion would be inconsistent and make the finding very rare, where as MS is very common for my age group with brain lesions and totally consistent with sx.

Still after Neuro 2's physical exam had me fall over hitting the floor twice, he asked if i'd ever been dx with depression or an anxiety disorder, answer being NO so he asked if i'd ever been depressed or anxious answer being NO, so he asked if I was taking anti depressants, answer being NO so i told him i'd already had my mental health fully assesed and there was nothing wrong with me mentally, so he said sometimes psychologists dont recognise mental health conditions (WTF!).

Testing continued and my left side was hyper compared to the right, the left kicked out fast and hard, clonus in the ankle once he set if off generated reactive muscle spasms, rippling up my leg and into my groin. It was horrible, i felt like i was being tazered, all my nerves and senses in that leg were tingling, muscles jerking in spasm and not in a good way. The reaction was the same even though he tested it over and over again (about 20 times), he even had me doing distrated actions and still that leg did its dance.    

When the tests were finished, he stated YOU dont have a neurological condition! I asked him if it wasn't neurological what did he think would be causing it, he said that wasn't his area, but I didn't have a neurological condition. I was stunned by many of the comments he gave to my questions, questions I asked trying to work out were the hell he was coming from. Every answer he gave became more ludicrous, to explain my cognitive changes (in an episode i can't name my family) and my recorded drop of 30-45 IQ points, he said IQ was subjective. On that one I just stood up, grabbed my coat and started to leave, I'd heard enough, I'd diagnosed him as an idiot suffering from 'dumb and stupid' a condition only doctors can get!

So I get it, most people dont experience what I have so please get your mental health checked out, it is a tool you can use if for nothing else but for your own peace of mind, well worth doing imho!

Cheers........JJ  
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667078 tn?1316000935
My Psychiatrist was the one who said you have something neurologically wrong and I will be with you all the way through the diagnosis process.

Alex
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Avatar universal
Good advice from you both!...thanks!
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1318483 tn?1318347182
I am in the process of getting a neuropsych exam, too.  Drs play with that "in your head" concept with me, too.  I want that taken off the table, so I am going to be tested.  I also am interested in the cog part of the testing.  I have been having trouble in that area and want a baseline on record plus want to see the degree of cog impairment I (may) have.  

Addi
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338416 tn?1420045702
See if the psychiatrist will schedule you for a neuro-psych examination.  It measures cognitive impairment and serves as a baseline for future progression.  It also helps prove that your problems are not psychosomatic - they're real.

I'm sorry you got stuck with this label.
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Avatar universal
Thank you both so much for your responses. Yes, I'm beginning to see that this psych consult may be a blessing in disguise...and no doubt, I have at times started questioning myself, wondering if perhaps I could be 'imaging' some of these symptoms.....so all in all...it can't hurt.

I'm Canadian and all neurologist referrals must be made through a GP....Also, it's difficult to find a new GP. the Dr. I saw yesterday was filling in for my regular dr.....I've sensed that my regular GP has skirted the issue of 'psychosomatic disorder' so perhaps it's a good thing to have it right out in the open now.

I really appreciate your responses....really helps to know I'm not alone. :)
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572651 tn?1530999357
by Lulu54 , 15 minutes ago
[delete]
Hi Maramor,

There are a number of people here who have undergone a full psych evaluation just to clear this question off the table.  It stinks that it is sometimes what is necessary to move forward looking for the real cause of the problems but it can be the path of least resistance.

Yes, you should be frustrated, angry and demoralized but the only way to clear this now is to do the eval and clear up the questions.

There are a lot of psychiatric issues involved with living with unknown symptoms and especially with a life- altering diagnosis.  A good psychiatrist can sort this all out. And then you can move on to find the real cause of your problems.

good luck and keep us posted,
Lulu
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Avatar universal
AMO
hi maramor,

alla to well i know. I know how absolutely frusturating it is and as you say demoralizing.

like  bob asked, you have just seen   your PCP?
By all means   you need to see a neurologist. I could not  say whhat your dx'ss is, but with lesions a specialist is called for.

Wheen a 'well admired'  dr.(by his peers anyways, NOT by me ) and i guess a highly educated neuro said  that  I must have conversion disorder  because my lesion load did not fit 'all my symptoms' ,buut he did not recommend     my be evaluated by a psychiatrist, he just told me to go home rleax and be happy with who I am...ha!
That was after my one and only 10 minute visit to him.

I went home, found a confident psych. and refered myself for a visit.
She was taken aback, saying someone    who does have conversion disorder   typically would not seek  a psychiatric appt them self.

Anyways   she was more dumbfounded why this supposed 'wonder neuro' even mentioned conversion disorder when she read my files and scans (she studied first neurology soo  was a good dr to see). Crazy thinng, beside my lesions, i had black holes, significant atrophy   AND  a biopsy that undoubtly proved cellulaar disease...ha!

It is wierd how even though evidence is true, you can begin to question and doubt yourself, can this  all  be a mental disorder?
After going through what I did, the bigest concern was , if I did have mental disease and had not taken myself , I would not been getting the tratment and care I would have needed.

My oppionion, what would it hurt to be evaluated? If you can find no reason not to, then do it.
Secondly, if you are not happy with  your doctor (the pcp?) I would incourage you to find a new one. YOu really need and deserve to feel confident in the people you are entrusting your healtcare.
I hope you find out what is going on soon, take care, amo
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Avatar universal
Wow!! Thank you so very much for that incredibly in-depth explanation. From what you've given me here, I don't see that they'd be able to diagnose me with somatization disorder....makes me feel better about seeing a psychiatrist. Perhaps this will end up being a blessing in terms of having my dr.'s take my complaints seriously...I imagine if 'somatization disorder' has been clinically eliminated, they can't keep going back to it.

My positive ANA is only slightly so, and while the ENA was positive, the subtests were all negative. I saw a rheumatologist about lupus and although she couldn't rule it out, she could not diagnose based upon my signs and symptoms...it was actually she who initially suggested the possibility of MS based on my symptoms and reflex tests. My instincts tell me that I am experiencing something that is auto-immune related...whether it's actually MS or not, I guess time will tell...?

Thanks again,

M


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1453990 tn?1329231426
I'm guessing you are seeing a Family Practice or Primary Care doctor.  Seeing a psychiatrist is usually a  good step in clearing the idea of a somatization disorder.  Many PCPs will jump on this if they "can  not connect the dots" ... symptoms that don't make sense to the doctor is the context of a disease.  Most MS Neurologists understand that MS never read the text books and presents in many different ways.  Many PCP are not aware of this.

Your MRI abnormalities could account for your physical symptoms, but there are some things that a Neurologist would have to rule out and explain prior to making a diagnosis of MS.  The Positive  ANA and ENA should be explained by additional testing.  Positive ENA and ANA are not usually seen in MS and are commonly seen in certain rheumatic illnesses.  
-------------------------------------------------------------
DSM-4 Criteria for somatization disorder:
A history of many physical complaints beginning before age 30 years that occur over a period of several years and result in treatment being sought or significant impairment in social, occupational, or other important areas of functioning.

Each of the following criteria must have been met, with individual symptoms occurring at any time during the course of the disturbance:

    * four pain symptoms: a history of pain related to at least four different sites or functions (e.g., head, abdomen, back, joints, extremities, chest, rectum, during menstruation, during sexual intercourse, or during urination)

    * two gastrointestinal symptoms: a history of at least two gastrointestinal symptoms other than pain (e.g., nausea, bloating, vomiting other than during pregnancy, diarrhea, or intolerance of several different foods)

    * one sexual symptom: a history of at least one sexual or reproductive symptom other than pain (e.g., sexual indifference, erectile or ejaculatory dysfunction, irregular menses, excessive menstrual bleeding, vomiting throughout pregnancy)

    * one psuedoneurological symptom: a history of at least one symptom or deficit suggesting a neurological condition not limited to pain (conversion symptoms such as impaired coordination or balance, paralysis or localized weakness, difficulty swallowing or lump in throat, aphonia, urinary retention, hallucinations, loss of touch or pain sensation, double vision, blindness, deafness, seizures; dissociative symptoms such as amnesia; or loss of consciousness other than fainting)

Either (1) or (2):

   1. after appropriate investigation, each of the symptoms in Criterion_B cannot be fully explained by a known general medical condition or the direct effects of a substance (e.g., a drug of abuse, a medication)

   2. when there is a related general medical condition, the physical complaints or resulting social or occupational impairment are in excess of what would be expected from the history, physical examination, or laboratory findings

The symptoms are not intentionally feigned or produced (as in Factitious Disorder or Malingering).


Criteria summarized from:
American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders, fourth edition. Washington, DC: American Psychiatric Association.

Hope this helps.

Bob
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