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Good Doctor some questions
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Good Doctor some questions

Where to begin?  At the end of September 99' I started experiencing some very odd and worrying 'symptoms'.  
Cronic (chronic) weakness,headaches, pins and needles, numbness, cronic (chronic) dizzyness, blured vision, dyslexia, slured speech, deminished concerntration span.  Most symptoms like dyslexia, concentration, speech seem sto come and go as they please.  They will occure many times a day but do fade in and out.  The remaining symptoms are always present just at varying degrees.  I have looked for patterns, times they manifest etc, but am unable to see any.

My first question is, should the neurologist have refered me to have an MRI?  My GP wanted to but prefered a neuro to do so.  When I saw the neuro, he made a clinicle diagnosis of fybromiositis.  He said that given the pain I had been experiencing, that is what it was.  Problem being, I never mentioned any pain, there is none.  I am waiting to see a neuro on March 15 2000.  The problem is I am going nuts not knowing what this even could be.  I already know what you answer to this question will be, but I must ask, what is the likley hood of this being MS?  I have had many blood tests all comming back normal.  Test have been done to see if there is any muscle wasting, there is none which rules out all known muscular dystrophies.  What else could this be?

Sorry for being so long, and thank you in advance for any advice.
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Avatar_n_tn
Dear Mr. Scott:

Together, the cluster of your symptoms are too wide spread to give you a diagnosis over the internet.  Dyslexia is something that is not episodic, but a neurological condition that is life long.  Muscle atrophy without muscle weakness is almost impossible.  The diagnosis of myositis is serious and your blood work should have been diagnostic.  Since your not taking the proper medication for myositis I doubt if your physician really thinks you have myositis.  Since I am not sure what labs you have had (but they are normal I assume) your symptoms (although not entirely) could be a thyroid problem, diabetes (uncontrolled, but very doubtful), alcoholism-related, lupus or SLE, post-viral syndrome, collagen-vascular disorders, epilepsy, medication side effects,rare metabolic abnormalities, etc.  Depending on your neurological examination, a MRI may or may not be needed.

What is really needed is a good neurological examination, some labs and then a direction can be started to find the source of your problems.  It is good your seeing a neurologist.

Sorry, I'm not able to give you more direction.

Sincerely,

CCF Neuro MD
17 Comments
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Avatar_n_tn
I have a really off the wall question to ask of you.  In regards to the CDT test, non drinker, should the value be at 0%?  In an ongoing neurological disorder should it be almost 4%?  What other illness could this test relate to if you don't drink?

Thank you
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Avatar_n_tn
Thanks for such a quick responce.  I must point out now that I am not a drinker.  From memory, the neurologist I saw mentioned that I had no thyroid problems.  In regards to my weakness, the tests he did (I wish I knew the tech terms to help you out more) involved him inserting needles into various muscles.  This needle was connected to some machine that indicated no muslce wasting.

The only reason that I am seeking further advice on this matter and not running with the myositis diagnosis is that from what the doctor told me, there is nothing to worry about yet according to all the net info I have seen, it is very serious indeed.  Bad Doc.

When I am able to be more spacific, I will notify you.  Oh, yah, another symptom that I forgot to mention was tremors/twitches in all limbs.
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Avatar_n_tn
Thanks for such a quick responce.  I must point out now that I am not a drinker.  From memory, the neurologist I saw mentioned that I had no thyroid problems.  In regards to my weakness, the tests he did (I wish I knew the tech terms to help you out more) involved him inserting needles into various muscles.  This needle was connected to some machine that indicated no muslce wasting, yet my streangth has dramaticly deminished.  I used to be a support worker for people with physical disabilities and am now almost in need of one myself.

The only reason that I am seeking further advice on this matter and not running with the myositis diagnosis is that from what the doctor told me, there is nothing to worry about yet according to all the net info I have seen, it is very serious indeed.  Bad Doc.

When I am able to be more spacific, I will notify you.  Oh, yah, another symptom that I forgot to mention was tremors/twitches in all limbs.
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Avatar_n_tn
Dear Adam:

Keep in touch.

CCF Neuro MD
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Avatar_n_tn
I have a really off the wall question to ask of you. In regards to the CDT test, non drinker, should the value be at
     0%? In an ongoing neurological disorder should it be almost 4%? What other illness could this test relate to if you
     don't drink?

     Thank you
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Avatar_n_tn
Dear CDT:

There are many medications that contain alcohol, so are prescription and some are over the counter.  In addition, there is the lie of a alcoholic.

Sincerely,

CCF Neuro MD
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Avatar_n_tn
Thank you for your response, the only over the counter medication being taken would be sinus tylenol, I do not think that it contains alcohol.  There is no question regarding an alcoholic, as no alcohol has been consumed recently or in the past.  If you have a neuro-muscular disorder, I have been told that it will surpress the readings of the CDT test. If that is the case, would they be higher? I am unsure of the use of the CDT test in its role when done with the sensory/motor serum panels.  Does this test play any role in amyloidosis and neuropathy?

Thank you for your help.
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Avatar_n_tn
I am very deeply offended at the above comment 'lie of an alchaholic'.  To clarify a little further, I do not drink and am on no medication, prescribed or otherwise.  I do not even bother with Pandole etc as they do not really releave the pain when I get headachs and wear off before the headach goes, they are a wast of time.
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Avatar_n_tn
Dear Adam:

Sorry you were offended, it was not intended to offend you.  We see many patients who deny drinking alcohol but finally it comes out that they have been heavy drinkers for years.  It was not meant to say that you were a drinker, only that alcohol can make a difference in testing and some people lie about their medical history.  I apologize.

CCF Neuro MD
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Avatar_n_tn
Dear Doctor,

Could you please read the question above scott's regarding the CDT Test and any relation to amyloidosis and neuropathy?

THank you
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Avatar_n_tn
While I am sure alcohol has different effects on different people, what is the typical quantity and duration of use where one might begin to suspect that this use is the cause neurological problems?  Thank you.
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Avatar_n_tn
Dear Croz:

Alcohol can induce congitive dysfunction at very low doses, and hence there is a neurological effect with only several drinks.  With most people the effect is transitory.  Long term effects from chronic use is usually many years of heavy drinking.  But that depends on the individual.  However, combined with other systemic diseases the effects may be acclerated, such as diabetes, amyloidosis, neuropathies, etc.

CCF Neuro MD
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Avatar_n_tn
Hi there i ve never posted here before but i was reading you posted and noticed you have alota the same symptoms as I.  I ve been through all the tests Cat's Mri's and innitially they found nothing.. diagnosed.. stress.. anxiety. back problems.. visual problems.. all a bunch of **** .. i knew it they knew it as well .. just recently I had another C.A.T. done and now it would appear my tonsils are swollen and malformed.. but now knowing this im worried as hell there is no self cell growth or nothing to lead anyone to belive it is a tumor.. but there is pressure in my head. . and my brain is apparently shifting back onto my brain stem and there worried about it causing paralisis and such .. i dont get to talk to the doctor till monday the 14th of feb and im scared as hell .. if the kind doctor could point out what might cause something like this as well it would be greatly appreciated ..
I am sincerly sorry to hear about your problems .. i know what its like ..Not pleasant:< ..
Hope you get well soon

Kevin
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Avatar_n_tn
Dear Kevin:

It is difficult to tell you what you may have without seeing the films and doing an examination.  The CT is not the optimal test to see the cerebellar tonsils.  In fact, to say that your tonsils are malformed based on only a CT scan, especially where you have had a normal CT scan in the past is very puzzling.  Again, malformed cerebellar tonsils are usually congenital and there from birth, so I'm stumpted.

Sorry,

CCF Neuro MD
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Avatar_n_tn
Thanx for your reply.. I am actually stumped as well, I couldnt make much sence out of the diagnoses.  Is it always the case such a thing is there from birth ? I had a pituitary tumor when i was two .. could that have affected it in any sorta way ?
I talked to the doc's briefly after they recived the scan they appeared rather stumped as well and im suppose to go back and talk to them on monday about my symptoms to see if its even possible.. They can t do an MRI to see because i still have metal clips in my head from the brain surgery when i was a child .. is there any other routes they might take in this ?

P.s is there any sites on the net i may gain info on this subject?
Kevin
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Avatar_n_tn
Dear Kevin:

The metal clips would preclude a MRI unless the clips are made from special metal and I would doubt that this was available when you were a child.  The CT does not give good images of the posterior fossa where the cerebellum lies.  So, I would make sure that the neurologist is reading the CT correctly.  No, a pituitary problem should not effect the position of the tonsils.

Sorry,I'm not much help.

CCF Neuro MD
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Avatar_m_tn
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