Discussions By Condition: I cannot get a diagnosis.

Brain is shrinking...Help!!!

Posted In: I cannot get a diagnosis. 30 Replies
  • Posted By: Classic_amber
  • January 6, 2008
  • 05:14 PM

Please help!! I have been to many doctors and specialists over the past 8 years. They say I have some type of disease but they do not know what type. I am desperate for help.

Here are some of my symptoms:

- had 6 CAT Scans - they show brain shrinkage at an alarming rate.
- jerking of arms and legs
- tremors of hands, legs and arms
- loss of balance
- loss of words
- numbess of toes up to knee and fingers up to elbow
- sleeping 15 hours a day
- very clumsy
- hearing is getting worse
- having trouble making out words (I do not understand what words mean at times)
- simple decisions cause me trouble now. (This was never a problem before)
- headaches every day

Please if you have an idea - please let me know. Any thing might help me.
Thank you

Amber

Reply Flag this Discussion

30 Replies:

  • how old are you, why cant you have an mri? timing of the ct scans?
    fewd4thought 126 Replies
    • January 6, 2008
    • 11:33 PM
    • 0
    Flag this Response
  • What hospital are you going to? If they really don't know then it may be worth getting an appointment with a neurologist at Cedar Sinai in NYC. They are a top hospital for brain diseases and injuries.
    komara 2 Replies
    • January 6, 2008
    • 11:40 PM
    • 0
    Flag this Response
  • Thank you to those that offered help. I cannot tell you how much it meant to have someone out there that offer some help. Thanks. I cannot have an MRI (they want me to do so) - but I have a cochlear implant. Having an MRI is impossible. They are thinking about as a last resort of doing surgery on me - (this could happen in the next month) - taking out my implant, giving me a MRI and then putting back the implant. As for the question about going to New York. That might be an idea. But I am a Canadian.I never thought of the implications. Amber
    Classic_amber 9 Replies
    • January 7, 2008
    • 00:09 AM
    • 0
    Flag this Response
  • Oop, I forgot to add. I am 45 years old now. This all started when I was 34 years old. It has been going on for 12 years in total. But the last 8 have been the worse. It is progressive. I have a cat scan every 6 months for the last 4 years. Thanks againAmber
    Classic_amber 9 Replies
    • January 7, 2008
    • 00:14 AM
    • 0
    Flag this Response
  • Lead poisoning is coming in real strong for you. You must eliminate the source, be it drinking and bathing water, paint, gasoline or whatever. Discover what it is like your life depends on it. Have them run a blood test for it and hopefully, if you eliminate the cause, you can halt its progression. http://en.wikipedia.org/wiki/Lead_poisoningThe symptoms of chronic lead poisoning include neurological problems, such as reduced cognitive abilities, or nausea, abdominal pain, irritability, insomnia, metal taste in oral cavity, excess lethargy or hyperactivity, headache and, in extreme cases, seizure and coma. There are also associated gastrointestinal problems, such as constipation, diarrhea, vomiting, poor appetite, weight loss, which are common in acute poisoning. Other associated effects are anemia, kidney problems, and reproductive problems.In humans, lead toxicity sometimes causes the formation of a bluish line along the gums, which is known as the "Burton's line", although this is very uncommon in young children. Blood film examination may reveal "basophilic stippling" of red blood cells, as well as the changes normally associated with iron deficiency anemia (microcytosis and hypochromia).Lead also interferes with excitatory neurotransmission by glutamate, which is the transmitter at more than half the synapses in the brain and is critical for learning. The glutamate receptor thought to be associated with neuronal development and plasticity is the N-methyl-D-aspartate (NMDA) receptor, which is blocked selectively by lead. This disrupts long-term potentiation, which compromises the permanent retention of newly learned information.The January 2004 edition of Scientific American magazine contained an article on schizophrenia that said the latest research:... implies that their brain circuits reliant on NMDA receptors are out of kilter. If reduced NMDA receptor activity prompts schizophrenia's symptoms, what then causes this reduction? The answer still remains unclear.However, a Johns Hopkins report by Tomas Guilarte stated:It has been known for some time that lead is a potent inhibitor of the NMDA receptor, a protein known to play an important role in brain development and cognition. In this study we demonstrate that lead exposure decreased the amount of NMDA receptor gene and protein in a part of the brain called the hippocampus.
    Monsterlove 2921 Replies
    • January 7, 2008
    • 01:06 AM
    • 0
    Flag this Response
  • I not sure how long you lived in your home, and is anyone else having problems,I wondering has any dr mention mold in the home, or where you work. mold is a nasty thing that grows and you cant get rid of it.
    Anonymous 42789 Replies
    • January 7, 2008
    • 01:14 AM
    • 0
    Flag this Response
  • Dear AmberThese are the things i could find that could cause brain shrinkageIs it all of your brain or certain areas?*hypernatremia*stroke and traumatic brain injury* Alzheimer's disease, Pick’s disease, senile dementia, fronto-temporal dementia, and vascular dementia* Huntington's disease, and other genetic disorders that cause build-up of toxic levels of proteins in neurons* leukodystrophies, such as Krabbe disease, which destroy the myelin sheath that protects axons* mitochondrial encephalomyopathies, such as Kearns-Sayre syndrome, which interfere with the basic functions of neurons* multiple sclerosis, which causes inflammation, myelin damage, and lesions in cerebral tissue* infectious diseases, such as encephalitis, neurosyphilis, in which an infectious agent or the inflammatory reaction to it destroys neurons and their axons Like Monster Love said have a test for heavy metals.i think lead does show up in the blood but you will need a 24 hour urine test with a provocative agent like dmsa for the other metals.
    Anonymous 42789 Replies
    • January 7, 2008
    • 04:30 PM
    • 0
    Flag this Response
  • I hope your Dr's have ruled out Huntington's Chorea. God bless you!
    Anonymous 42789 Replies
    • January 8, 2008
    • 03:48 AM
    • 0
    Flag this Response
  • Thank you for those that replied. I really do appreciate your help. I have never been tested for lead. I am going to call my specialist tomorrow and see if they can get me in right away for a blood test. Believe it or not, the doctors are just as worried as I am considering how long I have been with these symptoms. Several specialists at the clinic I went to mentioned "Huntington's disease". They want to give me a spinal tap to make sure. But, I am scared to death and have been putting it off. All this would be so much easier if I could ask my parents, but I am adopted and my sperm father has taken a court order to have my medical files sealed. I have to fight "him" (who ever he is) in court to find out any thing about my medical history. I am told by a lawyer that this could take years and cost me a lot of money. Something I do not have at this moment. Thanks again for your suggestions. I am going to look into each and every one. Amber
    Classic_amber 9 Replies
    • January 8, 2008
    • 05:06 AM
    • 0
    Flag this Response
  • Because your dad has sealed the records, you can bet there is some disease that he is hiding. Maybe a law firm would take this case pro bono, or some law students might be able to help.
    rad-skw 1605 Replies
    • January 9, 2008
    • 01:16 PM
    • 0
    Flag this Response
  • Thanks rad-skw I never thought of a grad student. That would save me money and still get the job done. Thanks for the suggestion.:)
    Classic_amber 9 Replies
    • January 9, 2008
    • 08:21 PM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Have they looked into Metachromatic leukodystrophy?
    Anonymous 42789 Replies
    • January 13, 2008
    • 04:07 PM
    • 0
    Flag this Response
  • Thanks mkor4. I really appreaciate the advice. I am going to ask my doctor about it. I have a lead test to do this week. They are not common here in the part of Canada I am from. So I have to find a clinic that does them. I just love being a "lab rat" LOL But, at this point I would probably do almost anything to find an answer. Does anyone else find the waiting the hardest part? For the first time this week, it is affecting my sleep. Thanks again everyone.Amber
    Classic_amber 9 Replies
    • January 14, 2008
    • 03:06 AM
    • 0
    Flag this Response
  • Amber,Did you doctors tell you what part of the brain is shrinking? Based on your symptoms it sounds like your cerebellum. If that is the case you have some form of Ataxia which can have lots of causes including toxic exposure (see previous post on lead, also alcohol, fumes etc.). You can also have other things going wrong at the same time.You may want to get your vitamin B1, B12 and E levels checked.A big one is to check for gluten intolerance which can cause virtually all of your symptoms. The blood test is the Gliadin (gluten) Antibody test. If you are well above zero then you need to be on a strict gluten free diet. You should check to see if they checked you for Celiac Disease and if you got the Gliadin Ab test can you post the result?I presume you are seeing a neurologist. Bear
    Anonymous 42789 Replies
    • January 17, 2008
    • 04:14 PM
    • 0
    Flag this Response
  • pain/stress causes an unexpected brain drain, according to a new study in which the brains of people with chronic backaches were up to 11 percent smaller than those of non-sufferers. People afflicted with other long-term pain and stress might face similar brain shrinkage, said study leader A. Vania Apkarian of Northwestern University. The results suggest those with constant pain lose gray matter equal to an oversized pea for each year of pain. Gray matter is an outer layer of the brain rich in nerve cells and crucial to information and memory processing. The results don't reveal why the brain shrinks, but it might involve degradation of neurons, which are the signal transmitters of the mind and body. "It is possible it's just the stress of having to live with the condition," Apkarian told LiveScience. "The neurons become overactive or tired of the activity." Another possibility is that people born with smaller numbers of neurons are predisposed to suffering chronic pain. But some of the differences measured "must be directly related to the condition," Apkarian said. The research involved a one-time brain scan of 26 people who'd had unrelenting back pain for at least a year (and in one case for up to 35 years), along with a pain-free control group. Pain sufferers had lost 5 to 11 percent of gray matter over and above what normal aging would take away. "People who have had pain for longer times have had more brain atrophy," Apkarian said. No attempt was made to correlate brain size to brain function. It is possible that some of the shrinkage involves relatively noncrucial tissue -- other than neurons -- and that some of the effects are reversible if the pain is eliminated, Apkarian and colleagues write in the Nov. 23 issue of the Journal of Neuroscience. Apkarian said other varieties of pain might cause a similar atrophy of gray matter, and he plans to study that possibility in future studies. "Suffering of pain is fundamentally an emotional condition," Apkarian said. "Different types of pain will have different types of emotional parameters, which will probably result in different types of atrophy -- different amounts and in different brain regions."This is something that could seem like a possibilitywhere in canada are you cause there are some really good doctors and hospitals in Toronto and
    rachel125 112 Replies
    • January 18, 2008
    • 05:04 AM
    • 0
    Flag this Response
  • Thanks Rachel125. I do suffer from chronic pain from a back injury and migraines. I did not know about this study. Thanks for the heads up!Amber
    Classic_amber 9 Replies
    • January 22, 2008
    • 04:41 AM
    • 0
    Flag this Response
  • Hi Bear,Thanks for the suggestion. I am being tested this week for the amount of lead in my system. I am hoping everything is okay. Amber
    Classic_amber 9 Replies
    • January 22, 2008
    • 04:44 AM
    • 0
    Flag this Response
  • Classic_amber, Im sorry I have no answers, I only suggest maybe you should tryloading up on Omega-3 DHA.http://www.omega-3centre.com/roles_long_chain.htmlhttp://www.dha-in-mind.com/Default.aspx?tabid=53Maybe even Colostrum.http://www.answers.com/topic/colostrum?cat=healthI'd be looking at the upper end for dosages.Sorry, I know its out there-but its all I've got. Regards
    TerryG 120 Replies
    • January 24, 2008
    • 00:38 PM
    • 0
    Flag this Response
  • Dear TerryG, thanks for your response. I do take Omega-3, but not in large doses. Because I am on a lot of medication right now, I will have to check with the doctor to make sure this is okay. But it sounds like something I should look into. Thanks. Amber
    Classic_amber 9 Replies
    • January 24, 2008
    • 06:21 PM
    • 0
    Flag this Response
  • hey amber I agree with the heavy metal assumption , but remember there are many chemicals that can cause your symptoms , so if the test shows negative for lead or mercury , it can be many other metals or can be other poisons in your body causing abnormal function of nerve cells and bodily function , just googe some sites that have detoxifying products I have seensites where they sell a certain clay that you mix with water and drink over time it can remove metals like lead , mercury , arsenic etc.... also it can remove any other unmetabolized chemicals from your body. Remember there are hundreds of thousands of toxins out there and the symptoms you have say your body is telling you something is wrong , I have the same symptoms as you such as pain , numbness , burning pain , uncontrolled muscle twitches , and the neurologist said they dont know whats wrong and told me to live like this (yea right) , I have been detoxifying for a month and a little bit of the pain has got better , but I still have uncontrollable muscle movements , but I will keep detoxifying. My advice is do some research online and find a site with a detoxifier that not only can remove metals , but all chemicals. you have got nothing to lose.
    ontherooftop 3 Replies
    • January 26, 2008
    • 07:47 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.