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Old 09-07-2005, 04:59 PM   #1
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Top neurologist doubts I have a neurological problem - so what is it, then?

I'm kind of at a loss for words at the moment. You may have read my thread on Wilson's Disease and how I may suspect I have it... I found out yesterday that I do not and that my copper levels are quite normal.

I have been seeing Dr. Stephen Reich, a movement disorder specialist in Baltimore. He's pretty well known in his field and I felt so relieved to finally see him back in May (waiting for an appointment with him takes at LEAST 3 months). I saw him again in August and he had me take a urine test for copper. He called me today and basically told me that he can't find anything wrong with me, neurologically. He didn't even insist that I see another neurologist - he simply said that I should if I want to. He instead wants to leave me in the care of a psychiatrist that I have been seeing (For Straterra) because of a paranoia induced story I have told the both of them lately. He thinks it is mainly depression. Depression?

I've only been depressed since this physical and mental hell has taken over. Depression? Does depression screw your gait up? Does depression give you constant tremors in every part of your body? Does it make you tingle all over, all the time? Does it give you freaky leg twitches? Does it allow you to be able to feel your pulse in several parts of your body? Does it make all the people you work with look at you funny as they observe your changes in movements? I have NEVER been a depressed person. It literally NEVER happened to me until I started to essentially detoriorate mentally and notice these horrible physical problems. My mother has some neuropathy problems and I wonder if this is a heredity matter, made worse by circumstances in the past.

Even while I sit here, OFF of my straterra (I have been taking breaks from it lately) I don't feel depressed. I don't feel suicidal.

In addition to our conversations and talking about my history, Dr. Reich's gave me a physical test each visit. However it is only really aimed at people with Parkinson's disease - so of course I passed them both times that he made me take them. They are simple reflex/movement type tests, but since I don't have body stiffness he didn't see anything wrong, despite seeing the tremors in my hands. He didn't see anything wrong with my walking, either. My walking is also not THAT bad, but it is noticeable if I am walking for a while, or in more open spaces at long distances as opposed to small hallways.

I'm really ****** off that this is the best he can do... I asked him if he thinks it could be Normal Pressure Hydrocephaly and he immediately said no. I have a past doing ecstasy and before I even got into that I was in a car crash that made me lose my memory for a few hours. Both of these are likely contributors to my current state. I'm just tired of not knowing and hope I can find an answer relatively soon. I mean, a psychiatrist? Give me a break. All she's going to do is dope me up on something that has nothing to do with my physical problems. Does anyone else think this is absolute bull****?

Anyone with similar symptoms/stories/advice, feel free to share.

Last edited by kookaburra; 09-07-2005 at 05:03 PM.

 
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Old 09-08-2005, 06:00 AM   #2
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Re: Top neurologist doubts I have a neurological problem - so what is it, then?

i totally understand your frustration in looking for answers.and believe me, depression is a very big part of having any sort of problems that cannot be answered.but it is not the cause of your neuro problems I am sure.i just have a few questions for you before I can really offer my advice,K?what sort of testing have you had done,if any?any cts or mris or anything like that?how bad was your injuries from the MVA you mentioned and was any films done on you back then to check into more in depth injuries?how significant was your use of extasy?This could also be the culprit here really,only because of the overall effects this drug has on the brain and the types of damage docs are seeing in past users.If you can give me this info I would be more than happy to try and help you figure this all out.I really DO know how you feel,and it just sucks to be there.Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 09-08-2005, 07:47 PM   #3
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Re: Top neurologist doubts I have a neurological problem - so what is it, then?

Hey,

Well to my knowledge depression doesn't cause those types of physical symptoms. But, Anxiety CAN!! I would strongly suggest that you go over to the Anxiety forum and browse those posts. You will find people who have the exact same symptoms as you, and they also have had a bunch of tests done which have come out normal. I know that leg twitches is a fairly common physical symptom of anxiety, and the tingling as well. Esp. since you have been very stressed out about these tests.

Our minds work in funny ways...if we become convinced that we have a problem...then our body will find a way to justify it. I'm not saying that this is what is happening to you...I'm just saying that this is what causes alot of these "weird" symptoms that we experience.

As far as the X usage goes...like feelbad pointed out it depends on a number of factors including how long you used it, and how much. But, I know that one of the reasons that they quit using it for medicinal usage back in the 70's was due to patients complaining of strange neurological symptoms such as twitching, shaking, etc.

 
Old 09-10-2005, 04:44 PM   #4
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Re: Top neurologist doubts I have a neurological problem - so what is it, then?

Quote:
Originally Posted by kookaburra
I'm kind of at a loss for words at the moment. You may have read my thread on Wilson's Disease and how I may suspect I have it... I found out yesterday that I do not and that my copper levels are quite normal.

I have been seeing Dr. Stephen Reich, a movement disorder specialist in Baltimore. He's pretty well known in his field and I felt so relieved to finally see him back in May (waiting for an appointment with him takes at LEAST 3 months). I saw him again in August and he had me take a urine test for copper. He called me today and basically told me that he can't find anything wrong with me, neurologically. He didn't even insist that I see another neurologist - he simply said that I should if I want to. He instead wants to leave me in the care of a psychiatrist that I have been seeing (For Straterra) because of a paranoia induced story I have told the both of them lately. He thinks it is mainly depression. Depression?

I've only been depressed since this physical and mental hell has taken over. Depression? Does depression screw your gait up? Does depression give you constant tremors in every part of your body? Does it make you tingle all over, all the time? Does it give you freaky leg twitches? Does it allow you to be able to feel your pulse in several parts of your body? Does it make all the people you work with look at you funny as they observe your changes in movements? I have NEVER been a depressed person. It literally NEVER happened to me until I started to essentially detoriorate mentally and notice these horrible physical problems. My mother has some neuropathy problems and I wonder if this is a heredity matter, made worse by circumstances in the past.

Even while I sit here, OFF of my straterra (I have been taking breaks from it lately) I don't feel depressed. I don't feel suicidal.

In addition to our conversations and talking about my history, Dr. Reich's gave me a physical test each visit. However it is only really aimed at people with Parkinson's disease - so of course I passed them both times that he made me take them. They are simple reflex/movement type tests, but since I don't have body stiffness he didn't see anything wrong, despite seeing the tremors in my hands. He didn't see anything wrong with my walking, either. My walking is also not THAT bad, but it is noticeable if I am walking for a while, or in more open spaces at long distances as opposed to small hallways.

I'm really ****** off that this is the best he can do... I asked him if he thinks it could be Normal Pressure Hydrocephaly and he immediately said no. I have a past doing ecstasy and before I even got into that I was in a car crash that made me lose my memory for a few hours. Both of these are likely contributors to my current state. I'm just tired of not knowing and hope I can find an answer relatively soon. I mean, a psychiatrist? Give me a break. All she's going to do is dope me up on something that has nothing to do with my physical problems. Does anyone else think this is absolute bull****?

Anyone with similar symptoms/stories/advice, feel free to share.
Wow can I totally relate to you!!! I have been having the crazy numbness, tingles, frequent headaches, stabbing pains, etc for the last year. I keep seeing different specialists to rule things out. So far I have had an EEG, EMG, MRI of brain and spinal cord, and next week I am having a MRA of my brain done. My doctor wants me to go on anti-depression meds though even though I am NOT depressed. He thinks it could be silent anxiety or something. I can relate because I also did X a few yrs ago. I did quite often for about 9 months. I can't help but think it is related, but at the same time my husband and many many friends did it just as often and took WAY more than I did, but yet they are absolutely fine. It is VERY frustrating to not know what is wrong with you. The biggest part for me to deal with is not knowing what the heck it is. I have this fear all the time that I am just going to fall over and die one day because I still haven't been diagnosed

 
Old 09-11-2005, 07:55 AM   #5
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Re: Top neurologist doubts I have a neurological problem - so what is it, then?

In some cases, docs will put you on certain types of anti ds for pain control.mostly the tricyclic type.they have proven to be very very helpful in helping to control certain types of pain,mostly nerve generated.meds like elavil and nortryptaline(i know I did not spell that right)are used quite frequently along with other types of meds in pain control therepy.It doesn't always mean that the doc thinks you are depressed.just wanted to mention that to you.marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 09-14-2005, 10:05 PM   #6
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Re: Top neurologist doubts I have a neurological problem - so what is it, then?

I'm sorry for you ailments, and I've been going through the same crap...twitches, tremors, and all...I was dismissed for anxiety and 2 neuros recommended a psychiatrist to me. I saw him and I felt worse than before! He did give me Xanax to calm me a little, but what they do not understand is that the anxiety is SECONDARY to the symptoms.

I finally found out I am positive for Lyme's. My ELISA test was negative, but antibodies were present (0.43 I believe)...0.90 is considered positive and a Western Blot is ordered. Well, I was curious, and my Western Blot was positive! You may want to at least consider this...

Last edited by ryanbabs; 09-14-2005 at 10:07 PM.

 
Old 09-16-2005, 05:00 PM   #7
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Re: Top neurologist doubts I have a neurological problem - so what is it, then?

Quote:
Originally Posted by ryanbabs
I'm sorry for you ailments, and I've been going through the same crap...twitches, tremors, and all...I was dismissed for anxiety and 2 neuros recommended a psychiatrist to me. I saw him and I felt worse than before! He did give me Xanax to calm me a little, but what they do not understand is that the anxiety is SECONDARY to the symptoms.

I finally found out I am positive for Lyme's. My ELISA test was negative, but antibodies were present (0.43 I believe)...0.90 is considered positive and a Western Blot is ordered. Well, I was curious, and my Western Blot was positive! You may want to at least consider this...
Exactly!! My doctor keeps blaming my stuff on anxiety too... hello?? The anxiety is from the constant worry over my symptoms! Frustrating!

 
Old 09-18-2005, 05:23 AM   #8
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Re: Top neurologist doubts I have a neurological problem - so what is it, then?

It took drs 7yrs to discovere I had a birth defect where my brain was distending apast my skull and was causing irreversible spinal damage....I have similar problems to you but those are only my minor issues. Hang in there and seek a 2nd opinoion if u feel you need to....it never hurts.

 
Old 09-22-2005, 06:02 AM   #9
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Re: Top neurologist doubts I have a neurological problem - so what is it, then?

I'm sorry you're going through all this. I'm in the same boat. Was totally healthy - 42 yr old female and very active with a 1 yr. old son. I started getting pressure on my upper breastbone and feeling weak in the body (mostly arms/legs/neck). I get really pale when I feel like this - almost ashy color to my face.

Went to Cardio and he did an EKG (which he said was only slightly abnormal and nothing to worry about . Did a stress echo and said all looked fine. Only the problem never went away. It's episodic and I can't figure out what brings it on. Now I have that feeling almost every day, at different times and it sometimes comes and lasts several days. Since July 27, with it comes some type of nerve attack. I get the pressure, then I suddenly get shakey and "hyper", get the weakness, body tremor (the tremor stays and my Neuro can see it), a strong vibration that seems to start in my chest area and radiates down through my pelvis and both legs. With that comes buzzing and spasms of muscles in legs. And, twitches all over my body. The symptoms never go away, they only start to get calmer - a little -- just in time for another wave to hit and it starts all over. I've been evaluated for phychiatry/anxiety related illness, but both phsychologists say it's not anxiety related and have recommended I go to Mayo. No duh. I told them that this is real and something is wrong. I've wasted 2 1/2 months waiting for doc appts and answers and am now worried that some of the nerve damage and symptoms I'm having might be permanent. I'm never felt overly stressed about anything until this crazy thing started happening to my body.

I've been to two internists, both of which put me on Klonipin, which I took and it didnt' help at all. Now I'm off of it. They sent me to a neuro, who took two months to determine that yes, I am showing diffuse weakness on my exam but said he's still wondering if it's anxiety since he can't find anything else and MRI of the brain was normal. Then I went to a new neuro at U of Chicago teaching hosp for a new start. She believes me...but can't figure it out. She thinks it's endocrine related since I have Hoshimotos Thyroiditis, and sent me to an endo. The endo spent only 10 minutes with me yesterday and said, yes, your thyroid was out of whack but is normal now, but that's not causing the neuro symptoms. She sent me back to my cardiologist because she thinks it's heart/vascular related. Before I even opened my mouth, he said, "what are you doing back here? You're a healthy 42 yr old and you don't have a heart problem - it's probably endocrine related." UGGGGHHH!!!!! I pushed for another EKG to make sure there were no changes..and there weren't any changes. He would not do another Echo on me. I tried to tell him about all the new neuro symptoms, and he was not wanting to listen. He thinks I'm dr. jumping too much. Though, the docs are the ones sending me around to new docs.

So, in total, I've had brain, c-spine and l-spine MRI's w/ contrast (though the brain mri was only for vertigo and headaches a month before the serious neuro stuff started). I've had a CT scan of the chest to see if something in there was causing the pressure under the breastbone. Negative. They did an EMG - negative. I can't believe it didn't pick up atleast benign faciculations - how could that be if my muscles are constently moving around in there? I've had a bunch of blood tests, incl. screening for metals, vitamins, Lyme disease. Metabolic and chem panels normal (except I noticed my Hemoglobin is high). ANA's were positive at 180 Titers and my Hoshimotos antibodies were positive at 1587 titers. Doc didn't think anything of those two tests, except that I still have Hoshimotos.

Anyone have an idea on what could be going on? I have no appts left to go to. I'm in official limbo now and no one knows what to do with me. I'm definitely not well, and it's not mental (though I'm starting to get depressed with all this going on).

Okay - didn't mean to take over your thread. I really just wanted to empathize with you and tell you that I too have so much going on physically and no one can "see" it so they automatically think it's anxiety. You are not alone. I'm sick of this and I'm sure you are, too. Hang in there. I pray they find a diagnosis for you soon so you can get treatment and feel better.

 
Old 09-23-2005, 06:08 AM   #10
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Re: Top neurologist doubts I have a neurological problem - so what is it, then?

Sorry for what you are having to deal with here,i di know the feeling.Did you ever have an MRI done on the thorasic area of your spine?with the symptoms you are describing,the problem very well could be in the thorasic area and not the brain or C spine.just a thought.since nothing else seems to have actually found a problem,this would really be a good idea.you could at the very least,rule that area out as a possibility.You could also have something affecting your sympathetic nervous system as well.it would explain all of your symptoms even the heart related crap,trust me on that.i have been having cardiac related symptoms(mostly throwing benign PVCs) that I never had any of before my surgery that caused all of my damage.while i was in recovery after this nasty surgery from hell.it actually took them almost two full hours of trying this and that to finally stabilize my erratic heartbeats.Never ever had that kind of thing happen before or since.But this was when they were pretty sure that they may have caused some SNS damage and other symptoms i ended up with during the next couple weeks and then now over the past two years totally confirmed that wonderful news.i really do think that you need to explore the thorasic area a little more closely.Was there any unusual findings AT ALL around the c 7 t1 area that were stated on your c spine MRI? if you do not have that report,get it.and also any and all medical records you may have generated during this quest for answers.i can tell you with 100 % certanty that you have NOT been always told everything that is contained in all your tests that you have had done as most docs just scan the reports and if they do not 'think" that something is important(while it very well was important,they just did not know enough to actually KNOW that).also gather ALL clinic notes and all other important documents contained in every docs file of the docs you have seen.This is all very very important info to have even for the average person but when you are on a quest for answers and seeing many differnt docs and having alot of different tests,it really is vital that you actually have ALL of your medical records in your own possession.please let me know how thing are going.And get that MRI.at least it is a shot anyway.marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 09-23-2005, 08:26 PM   #11
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Re: Top neurologist doubts I have a neurological problem - so what is it, then?

I agree with RYANBAB that Lyme disease is a consideration. There are over 200 symptpms related to Lymes which makes it easily misdiagnosed. My wife was diagnosed with Fibromyalgia 20 years ago---guess what---she has chronic Lymes. The Lyme bacteria creates neurotoxins that gravitate to nerves wherever they are released. Ammonia is the primary toxin. My wife had a bunch in her head. Even when we kill the bacteria, we still need to bind up the toxins for elimination, then heal the damaged nerves. Every symptom I see on this site is one that can be associated with Lymes. Six months ago, I knew nothing about Lymes, but now I know enough to be really boring. I'm happy to be boring if this helps one person.

dorkdad

 
Old 10-02-2005, 06:27 PM   #12
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Re: Top neurologist doubts I have a neurological problem - so what is it, then?

I hate to say this - but I am so glad that someone else is seeing Neurologists that don't seem to have a clue! I keep getting passed on from Neurologist to neurologist . . . I swear . . . . I PRAY TO GOD . . they better not try to tell me I have some depression or other disorder. I've been misdiagnosed enough.

I am just as frustrated as you are. Trust in God that he is showing us we are not alone.

 
Old 10-03-2005, 05:42 AM   #13
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Re: Top neurologist doubts I have a neurological problem - so what is it, then?

Hi robin,what are your main problems/symptoms?marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 10-03-2005, 05:43 AM   #14
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Re: Top neurologist doubts I have a neurological problem - so what is it, then?

Never mind,just saw your other post.marcia

 
Old 10-08-2005, 05:45 PM   #15
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Re: Top neurologist doubts I have a neurological problem - so what is it, then?

I am having the same problems. I am at Jefferson now - and no one seems to have a clue what is going on.

feelbad - I'm glad you mentioned what you did about pain treatment - because the doctors at Jefferson put me on Elavil for what they think I have (extremely rare migraine/aura and maybe TIA's). I was so upset they put me on an anti depressant. I couldn't understand why. They also ordered a Neuropsych test - they said to determine a baseline for cognitive loss - I looked up info on what Neuropsych testing was and suddenly felt like they were calling me a liar about how I feel. I'm just so tired of being misdiagnosed and treated like a mental patient!

 
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