Somatic or neurological function syndrome?

[Azlemed]

hi, I have been lingering for awhile. I had Cis type event may 2013 which had added anxiety on top of it. Mri should multiple t2 hypo intensities. 6 months later mri says insignificant changes, third mri, no change.

I was sent to psychiatrist who said some conversion disorder but this went away with change of meds etc. today my GP suggested we look at functional disorders as neuro who saw me for 15 minutes has suggested this. The private specialist I have seen says I am either early ms or migraines. I am confused. Fed up with my mental health issues being used as basis for all that is wrong with me.

My current symptoms are headaches, some balance problems, different reflex response on right side and heaviness and tingling on my right side.
Any sites or help would be great.
D

[Azlemed]

The other Symptom was tingling/pins and needles in my right hand and right leg and foot.

[Azlemed]

I saw my GP this week to get some medications, I asked him if I had had. CIS. He confirmed this and said that we need a change to show up on my mri or another event to happen. He agreed that the anxiety I had last year could have led to the functional stuff which were speech problems and myclonic jerks which resolved within 2 months of the CIS.

I wrote him a list of my five biggest symptoms. Fatigue/insomnia, headaches, balance issues, heAt intolerance

I also had written down the organic stuff we know about, t2 hyperintensites, hyperreflexes, pineal gland cyst. Tremor when doing finger to nose test, Lhermitte's sign.

This has all been added to my notes and helped me to clarify what I knew. It lead to a discussion about what next and waiting

[Azlemed]

I am scheduled to have another mri soonish, I think once that is done if it still shows no changes to the lesions etc then i will just continue on with the changes I am making, eg exercise, eating better etc.

Unless something major changes I don't see the hospital neurologist being much help and I only saw him again so that I stay in the public system.

Thanks for the advice :)

[supermum_ms]

I actually read www.neurosymptoms.org a few years ago, i still think it's a well thought out site, but it's just basically a nicer way for a neurologist to say....I believe you aren't making it up but your neuro tests, MRI's etc are not 'consistent' with a neurological condition and I believe your sx's are psychological.

Without question though cleverly worded, the site is centred on psychological but in it's wording legitimises 'functional' as being a true or real issue, and makes it a lot easier to accept  psychological causation if said like this....though regardless it's still explaining why this or that sx is a physical manifestation of a mental health issue and not actually from a neurological disease.  

Interesting reading, definitely food for thought but even though it claims only a 5% misdx rate, it definitely implies the neurologist may not know enough to get it right....

"How is the diagnosis made?
The diagnosis of a functional movement disorder is usually made by a neurologist. It can be a particularly difficult diagnosis to make because it requires expert knowledge of the full range of movement disorders due to neurological disease, many of which are unusual or even bizarre."

Assuming for argument sake that it is correct, if you look at the recommended treatment options listed for each functional issue, physio/exercise, occupational therapy, psych therapy, medications etc it's interesting that they are not dissimilar to what is usually recommended when it is neurological caused, so i think it would be a rather good idea to get a referral for a full physiological assessment, the result may really help work out what's going on.

Cheers.........JJ  

[Azlemed]

my GP is confusing me, this week he brought up the conversion/somatic disorder stuff when previously he had dismissed it. It was him who noticed the Lhermitte sign when he asked me to tip my head forward one day when I was there.

In the two weeks since I last saw him he has received a letter from the neurologist at the hospital. I assume it mentioned the functional stuff as that's what the hospital neuro suggested. The neurologist saw me for 15 minutes, did a partial neuro exam and said look at www.neurosymptoms.org as I think you will find it similar to what you are experiencing.

I hadn't seen him in 14 months so was rather unimpressed at his dismissive attitude and his lack of willingness to see past my mental health history.

I have seen a private specialist in the last year as well, three times and it's him who says my diagnosis to him is somewhere between migraines and MS.

He was the one who ordered my previous MRI and has helped me try different medications etc for the headaches.

I have copies of most of my notes and gave my recent GP notes to the hospital neuro, who looked at them for 10seconds and filed them in my file. I have my mri reports and some of the correspondence between my specialist and my GP. I also have my discharge from the hospital psychiatrist.

I think I will get copies of all of it and see what I can work out.

D

[supermum_ms]

To be perfectly honest, if not for Azlemed newly disclosing a prior history of being dx with conversion disorder and recovery with the medication changes, i doubt I would of even thought of CD as a 'possibility' for similar reasons you're mentioning but it was disclosed and to me if someone's physical symptoms are being blamed on a mental health issue, it's always going to be in their best interest to get their mental health appropriately assessed and have the proof that that idea just isn't true!

Someone being dx with conversion disorder or similar is an entirely different kettle of fish, there has been a lot of contradictory research over the last decade as well as anecdotal stories, that it just makes sense to make sure you get an unbiased opinion on if that dx is accurate or not. Worth reading this article about psychogenic movement disorder.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3073765/

My mother's personal medical history has been negatively effected by her dx of bipolar, too many of her physical sx's automatically blamed on her mental health and eventual tests dxed her with the 'correct' medial causation eg anxiety over a frozen shoulder turned out to be a heart condition, stomach pain from anxiety turned out to be gallstones and the list goes on....I truly believe in getting things in writing!

Puzzling to me is that your GP is now mentioning "functional disorders" if you've already had a psych rule out having conversion disorder, i'd think it would be a very good idea to get your psych to send your GP and neurologist your psychological assessment, so you can prove you've had that idea thrown out already!

I couldn't recall you mentioning Lhermitte's sign before, so to make sure my pee brain hadn't confused your posts with someone elses (lol totally possible with my foggie brain) i went through your posting history and the only thing i could find related was...."I also have a sore neck that when I tip my head forward sends nasty pain down my body." was this dx as L'hermittes?

I would recommend you consider getting your records, see what clinical findings have been noted by your neurologist as abnormal, something is not adding up if what you were told and experienced during testing, is not matching what's been written in your records, and if there is a discrepancy your GP might help you find out why the abnormal signs are not being taking in to consideration, as well as pointing out that you have already had conversion disorder ruled out.

Cheers........JJ  

[Azlemed]

I am currently taking citalopram, I took it for 8 yrs before my May 2013 event, they then changed me to venlafaxine which I came off in June this year because I read it can exacerbate headaches in up to 33% of people who take it.

At the same time I stopped taking metoprolol that I was trying for controlling the headaches. I went back on to citalopram and have had massive reduction in headaches till last week when one started that I haven't been able to get rid of yet.

[Azlemed]

Hi, the second psych I saw said I didn't have conversion disorder, I have done some reading in the past day that suggested you can have some conversion, functional etc symptoms that overlay an organic problem.

My mri said multiple subcortical t2 hyperintensites with most confluent measuring 6mm in the frontal lobe in vincinity of Central gyrus. Also a thin layer of pericallosal t2 hyperintensity.

[essdipity]

While agreeing with JJ that all the bases should be covered, I tend towards the idea that in this case, mental health issues are a handy excuse when the doctors don't have a better explanation.

I don't often lean in that direction when posters describe their symptoms, but in your case I am more persuaded. That's because of one-sided problems, l'Hermittes, and the fact that MRI shows lesions that possibly are MS. (Could you give us a bit more detail on these lesions, including location, shape and size?) Also, symptoms are in specific locations that correlate well with MS, and not randomly over the entire body, as we so often hear. Not to mention you are female and of a typical age for MS to set in. Also, brisk reflexes on one side don't just happen; they have a cause.

Just a couple of additional comments--If your lesions are described as punctate or pinpoint, or in other words, tiny, that gives evidence for the migraine theory. And if you haven't had an MRI of you neck (C-spine), push for that. Unless you've had an injury or have severe arthritis in your neck, l'Hermittes is very likely to come from MS, and a lesion should be visible there in MRI.

The fact that your most recent MRI was unchanged from the last one has no significance in the scheme of things. There is no timetable in MS. Further, the disease continues to progress regardless of what can be imaged. MRIs are a wonderful tool, but they have severe limitations as well. To name just one, they cannot show any activity in the brain's gray matter, though it is established that MS affects gray matter as well. Exactly how is a major research topic.

I don't know you at all, or what your personality is like. I don't know whether you've always been an anxious person, particularly where health is concerned, or whether the anxiety set in after you began to perceive strange symptoms. I don't know how happy your life is, or how stressful. Your doctors should be aware of these factors, however, before drawing any conclusions about your mental health. In fairness to you, your entire situation should be assessed, and that involves more testing than it seems you've had. Please read my earlier post again for some suggestions, as well as those I've made here.

Not knowing how your health system operates, I am hard-pressed to be specific as to what to do next if you are stonewalled by your present doctors. But you will need to find new and better doctors if the evidence for a mental disorder remains as tenuous as you have described it.

ess

[supermum_ms]

Food for thought......

It's not particularly uncommon for a neurologist to suggest there could be a mental health explanation eg health anxiety, conversion disorder etc when the neuro tests and MRI's etc are not specific or don't support the patients sx's list but it would have to be unusual for a psych to then dx a specific mental health condition like conversion disorder, if that person didn't actually fulfil the diagnostic criteria.

What I think you are basically saying is that you have a pre-existing mental health condition and were taking medication for it but additionally to that, you have been dx with conversion disorder by a psychiatrist. If the last time your neuro sx's were from CD and went away because you changed the mental health medication you were on, I don't think you really should over look and not explore the 'potential' that it is conversion disorder this time too.

I'm not saying that it definitely is, just that you should at least see your diagnosing psychiatrist (or get an independent psych opinion) to have your dx of conversion disorder re-assessed and if it isn't correct, then you'll get the mental health explanation taken off the table. [btw somatic disorder, functional neurological disorder and conversion disorder are all different labels for the same thing.]  

http://www.fndhope.org/functional-neurological-disorder-2/what-is-fnd/

I would also suggest you consider checking out the medication you take, if it is central nervous system delivered which many mental health medications are, there is also a possibility that the medication you take is causing issues and on that thought, it's even possible that the medication is no longer working as it once did, ie if you've been on it for awhile, and or there's been an additional psychological trigger and or singular reliance of medication and no other treatment etc.

Drugs .com is a basic patient/doctor site that you can look up individual medications and drug interactions if you take more than one.

There is sometimes a difference between what the patient perceives and their actual physical or clinical test results, so if your neurologist and GP are suggesting it could be functional disorder/conversion disorder, it would probably be a good idea to get copies of all your (past and recent)  neurological test results, to see if there are any specific clinically abnormalities that have been written in your file and inadvertently overlooked.
      
Food for thought............JJ

[Azlemed]

doh, just realised it should say hyper not hypo. My brain memory isn't as good as it use to be

[Azlemed]

Thanks, I have had LP and it was clear, my reflexes were written down as hyper reflexia, I am just frustrated that they see only what they want to see, my first mri said the t2 hypo intensities were possible demyelination.

My b12, thyroid etc are normal but both were low when I was in my 20s.

I don't know what to ask them to do next or do I just wait and see...

[essdipity]

Hi there.

It's a tough situation when a person with anxiety or similar mental health issues also experiences neurological symptoms. Many if not most doctors tend to dismiss purely sensory symptoms in patients even without a mental health background, and I suppose all the more so for someone like you.

You apparently have MRI results that fall into that exasperating category of non-specific, and reflex 'differences'? on the right side. Does that mean brisk?

These are the only 'evidence' your doctors have that point to a neurological problem. Though you experience several sensory abnormalities, the doctors can't see these, and all told this is why you find yourself in limbo. So what you need is more testing where the results speak for themselves. I suggest evoked potentials tests, and possibly a lumbar puncture. Also, complete blood work to eliminate or confirm other disorders such as vitamin deficiencies, thyroid problems, and other mimics of MS. Once all this has been done (assuming it hasn't been now), you may have a clearer picture of what is or isn't wrong.

My own journey towards an MS diagnosis was a long and tortuous one. To begin with all symptoms were sensory, and they mostly still are. That's a good thing, really, as my mobility is intact, if a bit modified. MRIs have always been abnormal but were somewhat ambiguous to begin with. Because of my advanced age in MS terms, my brain scans were thought to show vascular problems, though I had no history of high blood pressure, etc. And even when I finally saw a neuro at a major MS clinic, he still wasn't positive about MS.

Then I brought in all the old brain scans I had, and he was convinced of MS because of abnormal atrophy :-(  in addition to worsening of lesions year by year. But I also have definite right-side weakness, especially hip flexors, and last month my newest neuro told me I'm dragging my right leg slightly. It must be pretty slight as I wasn't even aware of it.

Years earlier I had testing showing abnormal right eye response in visual evoked potentials, and also definite neurogenic bladder as tested and reported. For whatever reasons, though, my MS clinic seemed to have dismissed these as a consideration. Still, when the weight of evidence piles up from objective testing, especially computer-assisted testing, diagnosis gets closer, until bingo, there you are.

My balance remains bad, I have problems with fatigue, bladder, body temperature regulation, burning skin paresthesias and a type of vertigo. This past spring into summer I had an awful flare with strange sensations in my mouth, including tongue. I've had these before but nothing of that magnitude. It was by far the worst bout of MS flare I've ever had, yet it was hard to convince my neuro because once again, it was nothing he could see, even though he knew I have MS and didn't doubt that part.

So all of the above is to demonstrate that I do understand what you're saying, from personal experience. But I do have 'objective' abnormalities as well. For better or worse, if you have MS this will happen to you too. I do urge you to pursue more testing other than MRI. Meanwhile it seems as if you are at least functional, so that's to the good.

Many people here are in limbo, and many, like me, have emerged from limbo to some diagnosis, not always MS. So keep posting for support, and keep pushing your doctors, and/or get new ones.

ess

[Azlemed]

I also have Lhermitte's sign, and if I stand with my eyes closed I fall to the left. I cannot have hot showers or baths as they make me really tired and fatigue is a huge issue for me most days.