SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Progressive Cognitive Decline
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

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Progressive Cognitive Decline

I've posted a few times in the neurology forum, but have only just discovered this board, so will have a bash at posting my issues here. I'm a 35 yr old U.K male, with no previous health issues, prior to December 2008, when the following problems started.

For the past 11 months I've been suffering from progressive cognitive decline. It's like my thought process has just been gradually breaking down more and more over this time. Now I'm at the point where I need assistance to wash, prepare meals, etc, as I just can't seem to follow any sort of sequences, or steps through to completion any more. I feel incredibly drunk and dazed most of the time with this, along with having appalling short term memory.

Over this time, I've also developed insomnia, blurred vision at times, severe muscle twitching, shooting pains in hands and feet, and more recently have started to have what my GP tells me are hypogenic hallucinations, pretty much every other time I go to sleep - something which I've never experienced before. I've also noticed some weakness and fatigue has gradually crept up on me over recent weeks too.

Since these problems began, I've seen 4 different neurologists, a neuropsychatrist, and a psychiatrist, and have had 2 MRI's of the brain - 6 months apart - both of which have been normal, not to mention blood tests for all the normal things, and a whole bunch more for exotic conditions and toxic posions - Lyme, etc. The neuropsychiatrist did the standard sort of memory and IQ testing, which showed there was a short term memory deficit present, but general I.Q etc wasn't too bad.

The last 2 neurologists I've seen, have both alluded to some sort of pseudo dementia / psychological condition going on, having ruled out all the more obvious things, along with M.S, vCJD, and anything else more organic. I think such a diagnosis has been reached, as despite the issues which I'm presenting, I'm still able to articulate myself verbally ok ish, along with being able to recall details fairly well about when specific symptoms started, etc, which they inform me I wouldn't be able to do by now, if there was some sort of organic cause.

I'm having trouble getting to grips with such a diagnosis though, given I've been told it's normally something which predominately only happens in the elderly, who have some sort of underlying depressive condition. At onset of symptoms, there was no depression present whatsoever, and I was very happy and content in life!

I posed the question to one of the neuro's, of whether some sort of pseudo dementia / somatisation disorder would cause such severe muscle twitching, to which I was told 'no one has seen your muscle twitching', which I can only deduce means, no, it wouldn't. Plenty of people have witnessed it, just not any doctors, given it's sods law that it's not going to occur during the few minutes I'm being examined.

As my options now are somewhat exhausted where further investigations are concerned, I don't really seem to have much choice, other than to accept such a diagnosis, despite both myself, and friends, etc who've researched the topic on my behalf, finding it somewhat questionable, given my age and the fact I didn't have any sort of depression at the time of symptoms onset - certainly not that I was aware of anyway.
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12 Comments
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551343_tn?1350880995
HI i did answer your other post.

Just out of curiosity did ANYTHING happen prior to all this starting, sometimes events before the symptoms can be a clue.

I mentioned my friend who has fibromyalgia she gets all your symptoms INCLUDING the hallucinations which her doctor tells her are because of her sleep apnea/insomnia.

Hers come just as she is falling asleep she gets weird dreams almost and her son at one point thought she was having a seizure as her eyes were wide open but no one was in.

I am not saying you have fibromyalgia no not at all but some of the diseases that mimic MS have similar problems. Her cognitive problems are vast too although when you talk to her she seems almost fine. Hers does get worse when she is stressed.

Have you checked for allergies?

Did you change something just before it started, your job anything.

Have you tested for metal poisonings? I did. I used to work in an old mill and I was convinced it was the office causing my sickness LOL. I had an analysis of my hair to make sure there wasnt anything weird going on but it was negative thank god.

Sorry I am flitting all over the place but something MUST have started this, just like mine and others on here. Even MS can be started through stress and environmental issues.

You dont sound like you have dementia to me.

I am not sure I would want to accept that you seem to be having far more going on then pseudo dementia. Take out the cognitive problems you shouldnt have any other symptom but you have, even peripheral neuropathy with pains in your hands and feet.

No there is something weird going on I would agree with you and your friends.

Mariax
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Avatar_m_tn
I've been assured the hallucinations upon falling asleep are nothing to worry about, and lots of people experience them. It just seems more than a coincidence they started fairly recently, as my general health was getting worse.

I had some very strange sleep related things going on too, earlier in the year. I'd wake up very abruptly - always in the initial stages of sleep - with a sensation of choking. I've been told to ask for some sort of sleep study to be conducted, but well, had to do battle for a repeat MRI instead, which I felt was slightly more essential to have done at the time.

Yes, I've been tested for all manner of toxic poisons, carbon monoxide, etc.

My life was ticking along quite nicely around the time of symptom onset, as well as a good few months prior to this time. No stress, trauma or anything like that going on, or even in the distant past for that matter.

I think the reason they've come up with pseudo dementia / some sort of somatisation disorder, is that when I'm rolling up, complaining of feeling very muddled in thought, easily jumbled, unable to follow sequences etc, I'm actually articulating all this fairly well, which in their minds, directly contradicts the symptoms I'm telling them I'm experiencing. Also, I seem to have new symptoms manifesting themselves, the longer this goes on. This of course, in the eyes of most doctors, just equates to me 'conjuring them up' due to wanting the attention or something.

The first neurologist I saw, who I foolishly made the mistake of returning to visit a second time due to things having got worse, even lectured me for making up new symptoms!!! After I'd had my initial MRI which had been normal, in his mind this obviously proved conclusively there was absolutely nothing wrong with me, so it was therefore impossible to have anything additional going on from when I saw him originally. To add insult to injury, I even paid privately for both of these appointments!
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Avatar_f_tn
Hello CK

Welcome.

The first thing I ask anyone is if they have copies of their medical records from all sources. If you do not have copies it seems prudent to start there.

And, you are not the only person to realize if a medical professional is unhelpful, obstructive or awkward it is not in your best interest to return to them. I was credulous to the point of great personal detriment...

Medical professionals are fallible but it is difficult to remember that when you are searching for the answer to what is slowly stealing your life..

Get your medical records.

Take care
Supo



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551343_tn?1350880995
Hi CK I agree with supo. I paid to have my notes and was amazed by what I found. The fact they told me nothing on my MRI turned out to be LESIONS but not thought to be MS lesions and lots of other stuff.

I will have a think over night and come back to your post. Its getting late for me at 7pm my fatique is making it impossible for me to think straight but i would like to continue with your post when i am more fresh.

hugs mariax
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Avatar_m_tn
As half of my appointments have been private, I've actually received copies of the respective consultants letters back to my GP. I've got copies of all bar one of the NHS consultation summaries too, and my GP let me read the one I didn't end up getting a copy of, so I'm not really in the dark as to what's been written about me

From having been able to read all of these, it's pretty obvious they're all siding with one another, believing my condition to be some sort of somatisation / depressive disorder, that's manifesting itself in cognitive and now, more physical symptoms.

After my initial MRI which I'd had on the NHS, I'd made enquires about obtaining copies of the scans and the radiographers report, but was informed they'd be an admin charge of £50, not the normal £10 for copies of records that had been just printed out, so was somewhat put off by this.

The second MRI which I had about a month ago was done privately, so I've not only received a copy of the radiographer report, but also copies of the scans themselves. Just as well really, as it would be somewhat beyond my abilities now, to actually go about seeking out copies of my records, from the various hospitals I've had appointments at over the past few months.

Fortunately, the last neurologist I saw, although I felt he wasn't that convinced by my plight (which was confirmed by him alluding to my symptoms possibly being caused by some sort of pseudo dementia in his letter back to my GP), did acknowledge my increasing concern by the progressive rate of my cognitive decline, so has arranged for me to be admitted to hospital for further tests, which is set to happen next week.

He initially suggested the tests could be done as an outpatient, but upon seeing how distressed I was upon hearing it would take around eight weeks to get all of them done, offered to admit me. At least this means I get to have all the tests done in one go, so as to speed things up, so for this I'm relieved to a degree, he did actually take on board my concerns, irrespective of his own opinion as to what was the cause of all my symptoms.

In the month or so that's passed though, since my appointment where the above was discussed, things have just continued to deteriorate, so I have a wee feeling that my scheduled stay as a guest of the NHS, might end up being longer than the two days I think it's currently penned in to be.
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551343_tn?1350880995
Hi CK, well thats good that you have your reports.

Did you have a SPINAL MRI?

One thing conversion disorder does not usually present with major cognitive problems.

Conversion disorder can present with any motor or sensory symptom including any of the following:

    * Weakness/paralysis of a limb or the entire body (hysterical paralysis or motor conversion disorders)
    * Impaired hearing or vision
    * Loss/disturbance of sensation
    * Impairment or loss of speech (hysterical aphonia)
    * Psychogenic non-epileptic seizures
    * Fixed dystonia unlike normal dystonia
    * Tremor, myoclonus or other movement disorders
    * Gait problems (Astasia-abasia)
    * Syncope (fainting)

......................................................

Its very easy to fob you off with this BUT CLEAR MRIs does not mean you dont have MS.

There is a link on the LINK thread on this group which explains negative results in MRI etc.

10% of people who present with MS symptoms will have no positive proof through MRI and LP BUT still can be diagnosed with MS.

To have CD you would need to have suffered some sort of crisis or similar. The idea of CD is it is your brains way of coping with something that was too hard for you to cope with at the time.

Can you think of anything that might have triggered it?

I am glad you are having more tests, I dont believe you are suffering with CD I cant imagine it would carry on declining so quickly.

Thank goodness you CDJ came back ok.

Have you been tested for diabetes, parkinsons? I am just trying to think of all the diseases that can manifest with dementia type illness, not that I am wishing any of them on you.

Will you keep us informed of how it all goes?

You know there is something wrong and I am glad your not being fobbed off with this diagnosis. Good for you. Maria


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Avatar_m_tn
Well, as much as I don't agree with the diagnosis that's been put forward, unless something shows up in these tests I'm set to have next week, I'm not really going to have any choice but to accept it, as I simply won't be able to get a referral to another neurologist.

As much as many of my symptoms correlate with a diagnosis of M.S, the severity of the cognitive decline doesn't really fit the profile, although I'm aware that just because lesions don't show up on an MRI, doesn't mean someone doesn't have M.S. I think this is why I'm set to have an evoked potentials test too. No, I've not had a spinal MRI - nor a lumber punch either for that matter, despite one having been suggested on more than one occasion now.

I've never heard of conversion disorder before, although am assuming from what you've described , it's just another name for somatisation disorder, or something very similar, if not the exact same thing.

I think all the more orthodox conditions have been ruled out by one neurologist or the other, so whatever is going on, I guess has to be one of the more weird and wonderful, rarer type ailments in existence.
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551343_tn?1350880995
HI CK without a spinal MRI there is no way they can discount MS although it is traditional for cognitive problems to be more in the brain then the spine however, again they can miss lesions in the brain MRI it depends on where they slice the film as to where lesions are.

I had a VEP which showed POSITIVE for a demylinisation event which i had when i was in brazil about 10 years ago. I went blind for a few minutes and it happened again when i came home.

It was still a long time before things started to go nuts with me.

Anyway the test results showed bilateral optical neuritis (both eyes) and my neuro agreed this would be proof that I did have ON attack in brazil and afterwards.

Good eh? NOT............I still havent been given a diagnosis.

SD is similar to CD this is a brilliant web site about SD

http://www.patient.co.uk/doctor/Somatisation-Disorder.htm

Note again its not so much affecting cognitive issues.

I really understand what you mean though if they are clear then all you can do is see someone to help you with it because if you dont they will just say WELL I TOLD YOU SO.

A lady on this forum was told she had SD/CD and did everything she could and even saw the psychiatrist who after evaluating her said NO it wasn't SD/CD, and funny enough she was recently diagnosed with M.E. but now they are not sure if it wasnt MS after all.

I will send her a message and see if she can tell you what to expect.

With SD or CD the assumption is you want to be ill and living on benefits yeh right sure thing.

The stress of not being taken seriously can also have devastating effects on us.

All you can do is believe in yourself truth will out. xx Maria



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Avatar_m_tn
In the summary of the initial consultation with my current neurologist that went back to my GP,  he kept alluding to my eyes more than anything else. Understandable I guess, as on the day of the appointment, my blurred vision had been particularly bad, so I must have emphasised my concerns about this, more so than some of my other symptoms.

He seemed most interested in the nystagmus he witnessed, reporting it occurred several times in each eye when doing the old 'follow my finger' test. Having never heard of it, I looked it up, and obviously now being aware of what it is, it makes sense him seeing this.

For a few weeks prior to this appointment, I'd found myself looking at something, but then my focus drifting off to something else, before returning back again to what I was originally trying to focus on. I just attributed it to my concentration having become quite poor.

It seems there's two types of nystagmus, one being psychological, and the other, obviously down to a more physical cause. Of course, having put forward the potential diagnosis of pseudo dementia, he stated that he believed the cause of my rapid eye movement to be psychological.

I've now read this can also be present with M.S, but also a whole bunch of other neurological conditions too, so am not too sure really what to make of his observations, aside from the fact it just goes further in my mind, to clarify there's something wrong. I've been referred  to see an ophthalmologist, to check out everything on the eye front, in a bit more depth, though am still waiting for that to happen.

Anyhow, I shall being enjoying a stay courtesy of the NHS from Wednesday onwards, for an unspecified period of time, whilst being poked, prodded and zapped by magnetic forces, to try and see if there is anything 'physical' going on, prior to a final diagnosis of pseudo dementia being settled on.

I think my 'trump card' for want of a better term, will be when I have the nerve / muscle test done this week, as given that my muscle twitching has gone into overdrive this past weekend, I can't possibly see how it wouldn't show up when hooked up to some sort of monitoring system, which will at least then I hope, render the possibility of any sort of somatisation disorder or the like; null and void!
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551343_tn?1350880995
Hi will you let us know how you get on when you come back out of hospital.

I am sure they will find it is not SD at all I am sure of that from the little I have read about you and your symptons. You dont sound like someone who is suffering from SD disorder to me.

I am not sure that the muscle twitching will show up on the machine for nerve test.

I had the nerve test done and it is to ascertain if the fibrous nerves have been damaged they do an EMG and a NCV tests. These are to eliminate illnesses that effect the nervous system like Peripheal neuropathy and the emg to test muscle weakness.

Muscle twitching well it could be nothing or something depending on the severity.

However, more severe muscle twitching is often associated with problems in the central nervous system and neurological conditions such as multiple sclerosis, Parkinson's disease, stroke, head or spinal cord injury.

I cant imagine yours is just normal they sound quite abnormal.

Done a little research for you.

After reading your thread, I wonder if you're having what is called tetany. Tetany is usually caused by hypocalcemia or low calcium in the blood. There could be various causes for hypocalcemia including hypoparathyroidism, Vitamin D deficiency [caused by poor intake, chronic renal insufficiency, or reduced exposure to sunlight], hypomagnesemia, drugs, etc.

http://en.wikipedia.org/wiki/Tetany_%28medical_sign%29

Have you had your magnesium and vitimin D12 checked? Both these can cause muscle twitching and even dementia symptoms.

Anyway please let us know how you get on. Its 7pm and I am now warn out LOL, been up since 6am this morning and had a surprise visit by one of my old work colleagues so I am pooped out now and cant think straight so am starting to ramble.

Maria


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Avatar_m_tn
Am finding getting online to be a wee bit of a struggle now, but shall certainly endeavour to try and update you, once I'm home. I suppose it's the severity of the muscle twitching which scares me, and what it's indicative of, more than anything. The twitching itself is no more than just an annoyance.

Thanks for doing a bit of research on my behalf, but yes, have had the most extensive blood tests done, to rule out any sort of deficiencies or more 'exotic' ailments. Aside from magnesium, and a couple of others which elude me now, I've had all the following checked: Thyroid Profile / T3 / Cortisol / Glucose / HbA1c / ACE / ANA / ESR / CRP / Lyme / Calcium / B12 / PTH / Folate

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551343_tn?1350880995
Hi well you should be going into hospital soon, so good luck, I hope you get answers what time tomorrow are you going in?

I wish you all the lucky in the world.

Maria
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