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    Old 04-16-2009, 06:50 PM   #1
    Mel52
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    Frustrated with neurologist

    I lost the vision completely in one eye for a few minutes. I forgot about it and a few months later mentioned it to my dr who immediately said I might have had a stroke and sent me for a cat scan. The results indicated focal 1-2 mm calcifications of the left sigmoid transverse sinus and a focal calcification in the anteroinferior left cerebellum adjacent to the posterolateral medulla. Probable zones of leukomalacia versus edema or infarction. could be prior trauma, vascular malformation or underlying lesion or cysticercosis. I was sent to a neurologist. He immediately said it was probably none of those and my neurological findings of standing on my toes, reflexes etc were normal. I did talk him into a lyme test which was normal, (by a Kaiser lab) I then had another cat scan with contrast (I can't have MRIs, was burned in one from my face plate)
    This scan indicated mild diffuse cerebral cortical atrophy, out of proportion to my age and multiple unusual calcifications in the left posterior-inferior cerebellum with possible encephalomalacia.
    So I went back to the neurologist. He said brain shrinkage is normal and radiologists have different opinions. I did tell him I had hit my head really hard years ago when I was thrown from a horse and broke my back. He said if I didn't lose consciousness then no, and he didn't respond when I said I lost my vision then for about 5 minutes. He also said a stroke is in both eyes in the brain and if I had a stroke it was in my neck.

    I am also concerned about my other symptoms of burning, tingling, fatigue, reynauds, bladder spasms etc. and maybe m.s. ( I also have sjogrens) He won't do a spinal tap, saying it is invasive and it might make my back hurt. He said if I had m.s. injections only stop 30% of the flair-ups and my exam didn't support it. I expressed concern about alzheimers as my mom has severe dementia and doesn't know minute to minute. He said there is no point in knowing since there is nothing that can be done. He doesn't think any of this is related anyway.
    My question. Does anyone know of another test that can better identify what is in my head? I have requested to see a different neurologist.

     
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    Old 04-16-2009, 08:29 PM   #2
    surreygal
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    Smile Re: Frustrated with neurologist

    Hi there:
    I know I'm replying a couple of years after the fact, so this may all be answered for you by now, but I thought I'd respond just in case...
    I too have Sjogren's and lots of weird neurological stuff, just like you. I sometimes lose my vision, and get "holes" in it. By this I mean that it is like looking through a glass of translucent water, but I can't make out any images--I know there should be something there, but my brain registers nothing. I also get wavy lines and bright lights/spots, etc. I also have Raynaud's syndrome. It can make it impossible for me to have any dexterity temporarily. Right now I'm waiting for a CT brain scan to determine what my latest problems are from because on Monday while riding my stationary bike (I'm an avid cyclist and try to keep fit) I had another "weird episode". These started a few weeks ago, but usually happened while I was doing something non-strenuous, like eating a meal. Suddenly I feel something bad is about to happen; the room gets bright, I start to feel very faint and I immediately lose my appetite. I close my eyes and try to stay very calm until it passes, which is usually only a few minutes. It's hard to explain, but I know it's coming from my brain/head. This time it happened while I was on my stationary bike, despite the fact I hadn't been pushing myself during my exercising. I stopped cycling right away, and immediately developed a massive headache that I still have, although it has subsided a bit since Monday. I also developed facial numbness which hasn't relented much since Monday (I've had this in the past too). I noticed for the rest of Monday that I had a staggering gait, and had trouble remembering what I was doing in a given moment. I have brain lesions, and was originally diagnosed with M.S. because I have all the typical M.S. symptoms. But, this diagnosis was refuted because my M.R.I. brain scans show my lesions as being static--they are not moving and changing as is characteristic of M.S. I read another post about the size of brain lesions being a determining factor as to whether it is SS or MS. I was not offered this explanation; one of my lesions is 8 mm yet I'm told I have SS not MS. One neurologist, my original neuro, and my GP, still wonder if I might have both, but I don't think so. Elaine Alexander, a well respected neurologist wrote extensively about her testing regarding this subject and she believes patients won't have both. The diseases are hard to differentiate, particularly considering it is the same rogue anti-body that causes both diseases (most likely). Another possibility is that weird symptoms mistaken as neurological in origin may actually be caused by vasculitis. As blood vessels supply all our cells and tissues with oxygen, anything that compromises their function, such as lesions, inflammation or damage, could interfere with the functioning of those served organs. This could result in mimicked neurological symptoms that are actually caused by a very mechanical problem. Nerves are also served by our vascular system, so vasculitis can cause them dysfunction as well. I know I suffer vasculitis. Just this morning I looked down and saw a big purple patch on my right big toe; another example of vasculitis as I have not injured myself there nor does this patch hurt. I also have spots/patches purple, etc. elsewhere on my body, so vasculitis is pretty typical with me. The CT scan I'm waiting for now will hopefully show that cerebral vasculitis is not the culprit of my recent problems. I sure hope it isn't. I need neither cerebral aneurysm nor hemorrhage, which is what vasculitis in the brain's blood vessels typically result in.
    My advice is to seek out a neurologist who also sub-specializes in auto-immune diseases. I am fortunate enough to have found such a specialist and he is very astute. You may also wish to ask your rheumatologist to investigate you for vasculitis. It may not be evident; you may not show contusions as sometimes vasculitis is "inside". Good luck and I wish you all the best. Take care.

     
    Old 04-17-2009, 11:24 AM   #3
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    Re: Frustrated with neurologist

    Hi thanks for the response. It was a recent question, done last night I already had the cat scan so no mention was given in regards to the vasculitis. I don't have continuing vision problems other than my vision kind of blurred in the left eye, the same one that lost the vision.
    I was not aware that the lesions move around in m.s. so thank you for that info. I don't have a history of brain scans established so I have no comparism.
    I am going to see another neurologist, unfortunately within my HMO. I hope the new one I have chosen will give me options, correct information and actually care. The guy I saw yesterday, absolutely had no interest.

     
    Old 04-17-2009, 01:03 PM   #4
    bethsheba
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    Re: Frustrated with neurologist

    Quote:
    Originally Posted by Mel52 View Post
    ...I am also concerned about my other symptoms of burning, tingling, fatigue, reynauds, bladder spasms etc. and maybe m.s....
    Ah, Mel52 we meet again, .

    The eye problems and the symptoms above are, again, symptoms that people with Lyme/coinfections have and the sjorgrens isn't unheard of in the bunch either. And if I haven't said it before, Lyme is often misdiagnosed as MS.

    I think your doctor's a good man if he wont do a spinal tap...at least he's not out for your money and he's HONEST about some of the risks involved.

    Quote:
    .... I expressed concern about alzheimers as my mom has severe dementia and doesn't know minute to minute. He said there is no point in knowing since there is nothing that can be done. He doesn't think any of this is related anyway.
    I think it could be related for several reasons...

    1. Lyme can be misdiagnosed as alzheimers and alzheimers can only be confirmed with an autopsy. I've read several posts on these boards where posters describe loved ones with rapid onset alzheimers (fyi, it takes a long, long time for the plaques and tangles to develop in the brain of a person with alzheimers). Rapid onset dementia, in my opinion and in the opinion of many experts, is caused by something else. LYME can be one of those "something else"s. Antibiotics, in some cases, can reverse this form of dementia!

    2. Lyme infections can remain dormant in the body for months/years/decades...and it can be passed from mother to baby before birth, and it can be passed from mother to baby through breast milk. If your mother has Lyme, if your mother passed it to you, it is possible that you could develp similar symptoms...but if that was the case the symptoms could be treatable and perhaps reversable.

    Quote:
    My question. Does anyone know of another test that can better identify what is in my head? I have requested to see a different neurologist.
    I may have suggested this before, but for the sake of others I'll mention it again. Many people with your symptoms have seen between 12-24+ specialists, including neurosurgeons. They finally got a diagnosis, and treatment after consulting a Lyme Literate Medical Doctor. We have no conclusive tests for Lyme...the best one available is the Western Blot from Igenex Labs in CA and that's not 100 percent reliable.

    Mel52, I don't mean to scare you but Lyme can kill...and the sooner it's identified and treated the more likely the symptoms can be stopped and perhaps reversed.

    Bethsheba

    I'm currently reading a book written by Constance A. Bean and Lesley Ann Fein, MD, MPH that may be of interest to you as it has some discussion regarding the various neurological testing that can be done to reveal damage in the brains of Lyme patients.

     
    Old 04-17-2009, 01:05 PM   #5
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    Re: Frustrated with neurologist

    We've recently had some posters with vision loss on the Lyme boards...perhaps it would be helpful to check their posts as well.

     
    Old 04-17-2009, 01:11 PM   #6
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    Re: Frustrated with neurologist

    All of the symptoms surreygirl is experiencing are those of Lyme...brain lesions occur in 15-45 percent of Lyme patients. At least there was not a misdiagnosis of MS...

    Lyme patients with similar lesions have recovered with antibiotic treatment.

     
    Old 04-17-2009, 04:07 PM   #7
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    Re: Frustrated with neurologist

    Hi there:
    Been there-done that, unfortunately! Was seen by an infectious diseases specialist many years ago--2002-- and Lyme test came up negative. So, Lyme Disease was ruled out. Good thoughts, though and thanks for the suggestion!
    Cheers!
    Surreygal

     
    Old 04-17-2009, 08:41 PM   #8
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    Re: Frustrated with neurologist

    Quote:
    Originally Posted by surreygal View Post
    ... Was seen by an infectious diseases specialist many years ago--2002-- and Lyme test came up negative. So, Lyme Disease was ruled out. ...
    Our knowledge of this disease has grown since doctors last considered the possibility in 2002.

    Infectious Disease doctors are not very highly regarded by people with Lyme...seems ID docs believe many old myths, and haven't kept up with their reading. In our country, some unethical Infectious Disease Docs (one who was one of twelve to establish the diagnostic protocal in our country) may be intentionally perpetuating these myths for personal gain...in one state they recently sued the suspected culprits and won. It will take awhile before everything comes out in the wash but in the meantime people who have been told they don't have Lyme when they do actually have Lyme are paying the price.

    It is so important to advocate for one's self...there is simply to much at stake not to!

    Last edited by bethsheba; 04-17-2009 at 08:42 PM.

     
    Old 04-18-2009, 11:40 PM   #9
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    Re: Frustrated with neurologist

    [QUOTE=bethsheba;]Ah, Mel52 we meet again, .
    I think your doctor's a good man if he wont do a spinal tap...at least he's not out for your money and he's HONEST about some of the risks involved.

    Hi Bethsheda, I have a HMO so it would cost me 10 bucks. The less he does the more money he gets. You had to be there, but he was one of the worst doctors I have ever seen. Example, since I didn't lose consciousness, then the calcifications are not from a head trauma. Since I can't have a MRI then a spinal tap is the only way. I don't like the idea but I would like some answers.

    (bethsheba quoteI think it could be related for several reasons...

    1. Lyme can be misdiagnosed as alzheimers and alzheimers can only be confirmed with an autopsy. I've read several posts on these boards where posters describe loved ones with rapid onset alzheimersRapid onset dementia, in my opinion and in the opinion of many experts, is caused by something else. LYME can be one of those "something else"s.
    If your mother has Lyme, if your mother passed it to you,.)

    My mom was always healthy until a few years ago. She had breast cancer, caught early but the meds caused osteroporosis and two stress fractures in her back, tremendous pain. At the same time, my sister drowned and two months later my dad had a heart attack leading to open heart surgery. It was too much, I believe for her to deal with and she had a stroke.She started forgetting. She had another stroke two years later. Her brain pattern does not show alzheimers but dementia. She has long term memory but no short term.



    (quote Bethsheba)I may have suggested this before, but for the sake of others I'll mention it again. We have no conclusive tests for Lyme...the best one available is the Western Blot from Igenex Labs in CA and that's not 100 percent reliable."
    I took your suggestion and did get testing for lyme. THe Western Blot, but it was not sent to Igenex Lab as I have Kaiser. Negative.

    My problems began after getting breast implants years ago. It wasn't until the publicity came out 5 years later that I found I had a rupture. After removal, many of the symptoms eased up, but I was left with fibromyalgia, the sjogrens and a mixed connective tissue disease. I learned to pace myself and within certain guidelines was doing ok over the next 20 years. I was injured at work, leading eventually to wrist and back surgery. (still waiting for another wrist surgery) During this 3 year wait, my symptoms have become really bad. As you know, I thought some of it was menopause, but now I know there is something going on in the brain.

     
    Old 04-19-2009, 05:59 AM   #10
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    Re: Frustrated with neurologist

    Mel,

    Wrote something here but deleted all as I really want and need to spend quality time to address your post...first to church.

    Please be patient with me.

    Bethsheba

    Last edited by bethsheba; 04-19-2009 at 07:11 AM.

     
    Old 04-19-2009, 07:37 AM   #11
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    Re: Frustrated with neurologist

    My mom was always healthy until a few years ago. She had breast cancer, caught early but the meds caused osteroporosis and two stress fractures in her back, tremendous pain. At the same time, my sister drowned and two months later my dad had a heart attack leading to open heart surgery. It was too much, I believe for her to deal with and she had a stroke.She started forgetting. She had another stroke two years later. Her brain pattern does not show alzheimers but dementia. She has long term memory but no short term.

    Not certain of the age of your mother, but in older adults the two main causes of dementia are Alzheimer's (caused by progressive build-up of two types of protein), and Vascular (caused by blood vessels getting blocked). In many older adults with dementia, both processes are taking place. With a history of stroke, your mother is more likely to have a vascular dementia. By treating the risk factors for stroke (high blood pressure, diabetes, cholesterol, smoking, drinking etc), this is easier to control than Alzheimer's because nobody has identified any modifiable risk factors for the production of the relevant proteins.

     
    Old 04-19-2009, 10:21 AM   #12
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    Re: Frustrated with neurologist

    Quote:
    Originally Posted by lymphpre View Post
    .... but in older adults the two main causes of dementia are Alzheimer's (caused by progressive build-up of two types of protein), and Vascular (caused by blood vessels getting blocked). In many older adults with dementia, both processes are taking place.
    Yes, although personally I would qualify this with "two main 'recognized' causes of dementia..". Until we can identify all of the causes of dementia, I don't think we can state what the main causes are, but that's an opinion.

    Having experienced many of the symptoms of dementia for over 1 1/2 years beginning at the tender age of 52 (example: I would get lost on my way to the hairdressers which is two blocks from my home---couldn't correctly add bank deposit slips nor could I address envelopes accurately and couldn't remember the names of my best friends) and having a complete reversal of these symptoms within weeks of discoing blood pressure meds, I can't help but think that we have a multitude of people who are presenting with dementia when the real problem is med side effect.

    Bethsheba

    Last edited by bethsheba; 04-19-2009 at 10:21 AM.

     
    Old 04-19-2009, 10:52 AM   #13
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    Re: Frustrated with neurologist

    Quote:
    Originally Posted by Mel52 View Post
    I have a HMO so it would cost me 10 bucks. The less he does the more money he gets.
    Forgive me, Mell52, how quickly I overlook the flaws in our medical system!

    Quote:
    ... My mom was always healthy until a few years ago. ... It was too much, I believe for her to deal with...
    I think you know how very, very sorry I am for the multiple losses suffered by you and by your family. I can't imagine the pain and can only say I am so very, very sorry.

    Quote:
    ...Her brain pattern does not show alzheimers but dementia. She has long term memory but no short term.
    Unless things have changed recently, we can only diagnose Alzheimers by doing an autopsy. If she has long term memory and no short term, it may be due to stroke but it is unlikley it is Alzheimer's. It is not uncommon for people with Lyme Disease to experience multiple strokes. If your mother has good long term memory, and no short term memory, I think it very, very, very unlikely she has Alzheimer's disease...and although a stroke may have caused these problems, it is very possible that Lyme caused the strokes, and that if treated soon enough, some damage may be reversed.

    Quote:
    ...My problems began after getting breast implants years ago.....During this 3 year wait, my symptoms have become really bad. As you know, I thought some of it was menopause, but now I know there is something going on in the brain.
    I think you really need to continue to consider Lyme for both you and your mother...injury, illness, and stress can "feed" an infection that has been lying dormant for years...the immune system can only do so much.

    The Western blot may have tested "negative" depending on what tests your doctors ordered (in addition to Lyme there are various coinfections) and depending on what criteria they used to evaluate it. If the doctors used our government's "definition" of Lyme, it might very well read "negative" because of our government's definition of Lyme is very narrow. And of course, many people test "negative" for years before getting a "positive".
    Do you have a copy of your test results? If not, I'd advise getting a copy and posting the results on the Lyme boards...some of those people are very knowledgeable when it comes to interpreting what the different bands mean. You might get a better feel for what they tested for and what it means.

    It wouldn't hurt to compare notes with some of the people who have been diagnosed with Lyme and who are currently experiencing vision loss.

    I am very concerned that I'm coming across as pushy or as someone who has a vested interest in Lyme...my only motives are that many people are suffering because of medical politics (think of your experience with managed care here), and that some of these symptoms can be prevented, reversed, or at least stopped with proper diagnosis and treatment. Please keep in mind that many people who have been diagnosed and treated for Lyme, and who have responded to treatment, have seen between 12-24 specialists before getting the help they need. This delay causes unnecessary pain and suffering.

    You and your family are in my thoughts and in my prayers!

    Bethsheba

    Last edited by bethsheba; 04-19-2009 at 11:01 AM.

     
    Old 04-19-2009, 10:02 PM   #14
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    Re: Frustrated with neurologist

    Hi, my mom is in her middle 80's. I don't know much about all of this, but the neurologist had told me that her brain didn't have the pattern of alzheimer's. She used to smoke, quit about 15 years ago, did yoga, social drinker, low blood pressure, no diabetes. She took care of herself.

    Not certain of the age of your mother, but in older adults the two main causes of dementia are Alzheimer's (caused by progressive build-up of two types of protein), and Vascular (caused by blood vessels getting blocked). In many older adults with dementia, both processes are taking place. With a history of stroke, your mother is more likely to have a vascular dementia. By treating the risk factors for stroke (high blood pressure, diabetes, cholesterol, smoking, drinking etc), this is easier to control than Alzheimer's because nobody has identified any modifiable risk factors for the production of the relevant proteins.

     
    Old 04-19-2009, 10:08 PM   #15
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    Re: Frustrated with neurologist

    Bethsheba, thanks for your imput. I will get a copy of the lab work on the lyme. All I know was the test was the western blot.
    I will be seeing another dr. I won't be giving up.

     
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