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Posts (8)

Wed, Mar 13 8:17pm · Restless Leg in Brain & Nervous System

Butrans 5mcg weekly patches prescribed for back pain stopped my severe restless body syndrome the day I applied the patch. I was desperate to see my grandsons and finally put the patch on my arm. I felt nothing. I thought I would feel a wave of pain medication. It is such a slow release that you feel exactly the same, UNTIL, I went to bed and slept! 8 years of Restless leg, arm, whole body syndrome completely gone. My doctor upped the patch to 10mcg and my back pain is now manageable.

Oct 17, 2018 · Chronic dizziness due to vestibular issues. in Brain & Nervous System

Hi, one thing that has helped is Florinef 0.1mg x 1 daily for orthostatic hypotension which my doctor diagnosed in 2016 but did nothing about? But it did not get rid of the daily dizziness so I had to start all over. I found out that chronic right lateral and posterior cerebellar infarcts, which are small strokes cause dizziness. I also found a syndrome called PICA. After I read the symptoms one stood out, HICCUPS. I clearly remember having horrific hiccups that made me want to kill myself because they were so persistent and would not go away. Luckily, my husband was a witness to them during the time that I believe I had my last bit of mini strokes that started this new onset of crazy dizziness. I am starting Vestibular therapy next week, ordered by my Neurologist. I have a follow up appt with her next week also, which means that my husband will have to go and be my backup person so that she believes that I am not making the hiccup story up. It all makes sense because I have the hiccups a lot. I have a super horrific migraine today with awful visuals in between both eyes. Oh, but here is what I have been doing every morning in order to get out of bed…two 20mg of adderall and two Fiorcet pills with a bottle of (white) Gatorade along with the Florinef and one Zofran for nausea. I have a paradoxical effect to meds whereas Aderrall makes me sleepy and Zofran and Fiorcet make me hyper. If your dizziness is caused by mini strokes I have read that we cannot do anything about it except control our blood pressure and cholesterol. Since starting Repatha my cholesterol dropped from 354 to 204. I am a tiny person who is unable to eat a healthy diet so to gastroperisis, lemmel's syndrome, sphincter's that do not work, etc…and depend on ensure and lots of liquid vitamins to keep me healthy. And, I have never smoked. I have multiple health problems do to Heavy metal toxicity poisoning shutting down my system from elemental mercury toxicity vapors while working at a Biotech company from 2010. The MRI results are from a diagnosis for Trigeminal Neuralgia. I also have severe Peripheral Neuralgia, just to name a few reasons for having vertigo aka severe dizziness. I hope this helps. Krissy

Sep 20, 2018 · trigeminal neuralgia and Parkinson's diagnosis in Brain & Nervous System

I had to send my Neurologist an email today telling her that my vertigo is back. She said that she told me so and is referring me to vestibular therapy! I emailed her back asking about MCA? But, seriously, over the years of seeing hundreds of doctors, I do not believe these doctors should be doctors? OMG, I just read your post of what your doctor said about, "I do not do research" It is exactly what I was thinking, (that her doctor will not spend time on research or wanting to know what's new and improved)? INSIDE LAUGHTER! . I also have to say, I thought the people replying to my posts were so HELP full? I wish I could help you with this answer. Hopefully I will not get Parkinson's. Elemental mercury toxicity by inhalation fortunately, (I guess) only mimics diseases. Therefore, instead of having masses of cancer throughout my abdominal wall, I have been diagnosed with another rare disease, Lemmel's syndrome? But no cancer. Lots of pre cancer. All symptoms of MSAc and POTS without the tremors. AND, alot of the signs of MCA on my MRIs, but I am going to stick with Trigeminal Neuralgia and POTS! Best, Krissy

Sep 19, 2018 · Dizziness for over 2 years. in Brain & Nervous System

I have goose bumps all over my body and immediately started to cry. I have never heard of anyone with these sores. I got one on my left arm one day walking up the stairs. It wasn't the store but my skin just tore off, I had no idea and I woke up from a nap with blood all over the sheets. And I had one of the sores early on break out on my ankle. The first test by doctor did was for Amylidosis, and it came back negative which is crazy because I al also have all of those symptoms. I read a report from this oncologist at UCSD, Dr. White, she said that she wasn't sure what was wrong with me because when she asked if I had something I did? Guess what, unfortunately every test she ran I HAD, including my anal sphincter not working, I could not pass the balloon test, DUH! I made them change their report to not say, "she says she has al man ental poisoning", it was even worse spelling. I realize now that once I said the word ELEMENTAL, doctors stopped listening. They still don't, hahagagahagahaga! That's my laugh at myself! I will read your story this afternoon. Thank you for the goosies!

Sep 19, 2018 · Dizziness for over 2 years. in Brain & Nervous System

How funny that we were writing at the same time? Speaking of elderly, I finally get to go see my mother n law. We had to put her in a wonderful, brand new facility for memory care and Alzheimer's this past April, (she believes it is a wonderful hotel somehow owned by her parents because she says, "they keep telling me everything is taken care of", her expenses). She loves living there. Let me get up and get dressed. Enjoy your day!

Sep 19, 2018 · Dizziness for over 2 years. in Brain & Nervous System

Jennifer, I just reread your post. YES, I was surprised that my neck was also causing all of the other issues, and said to myself, "that's why my hands still do not work"? And I thought "Wow" just another reason why I have bladder/diarrhea issues? I definitely will not diagnose myself, but like you have had to do my own research. To find out that POTS, is another syndrome but less severe than MSA-c, and is what my Neurologist and Cardiologist are saying I have, (at the moment) not excluding my neck stuff. My cardiologist put me on Florinef 0.1mg x 1 daily fit the orthostatic hypotension on 9/13/2018 and by this past Monday I was able to drive myself to my neurologist office. Walking down the long hallway, I realized that I have to learn how to walk again, I felt like a fool, I was so wobbly. It was truly weird having a clear head. My neurologist told me not to get used to the vertigo being gone, but I will take what I can get. WHY MY CARDIOLOGIST DID NOT PUT ME ON THIS MEDICATION 3 YEARS AGO IS SO FRUSTRATING. It clearly says in my file from my first visit with him that I had and every visit after that I have orthostatic hypotension? I mean, think of those years wasted with not one doctor taking me seriously. Try keeping a relationship together when you have to be propped up on a pillow, cant move your head, afraid for the bed to shake while having sex? If I had the energy, I would sue every doctor that I have seen just for ruining so many years of my life! They are all lucky my head is too ADHD to concentrate on all of the HATRED and can only stay somewhat sane by laughing it all away. RIGHT after my Neurologist appt on Monday I sat in traffic to pick up my son and take him grocery shopping for the first time in along time, it was so fun! One more thing, when I was getting my migraine botox shots on Monday, my neurologist said to me to clench so she could inject the ones near my ears because of night time clenching and she was surprised that "whatever" was not swollen like usual and I was able to tell her about the sudden snoring and horrific nightmares that I all of the sudden have and she is having me do an in house sleep test to see if I need to do a hospital sleep test. This is the first time ever that a doctor has took me serious and all because my face/jaws something was not swollen? Image if I were knew to her practice, she would have laughed at me in her head? No one can make up the stuff that keeps happening to me? Have you heard of POTS, because I have not, and I have been Googling my symptoms for a few months with POTS never showing up, only the MSA-c? Oh, and this time she injected the botox from shoulder to shoulder and more in my lower neck. I didn't question it, but now I realize it's because she saw the MRI of my neck and let me tell you, I didn't understand why my neck hurt so bad yesterday and why i only had one good day without a headache and it's because of the botox. Unfortunately I am one of those people who have a few weeks of horrific pain after the injections but get a good few months relief from the trigeminal neuralgia shooting pains after. Two months ago I wanted to see if I could stop the botox just because of how debilitating the few weeks are after and I ended up suffering two weeks prior and two weeks after of crazy headaches, so I will not be doing that again!
I am super happy that you are able to paint again. I love arts and crafts but have had to stop. Maybe I will talk to Dr. Udani about the surgery. I need to get over the fear also. Does that mean I need to get over the fear and have Trigeminal neuralgia surgery too. Look up Dr. Alksne in La Jolla CA, he is way too old to be performing surgery! And than i have to get over the fear of a Whipple procedure on my stomach, and why i have a horrific fear of going to the ER because I am EXTRA FEARFUL that I will have to have the Whipple surgery. I am doing everything possible to stay clear of that one, UGH. lots of laughs and big smiles, Krissy

Sep 19, 2018 · Dizziness for over 2 years. in Brain & Nervous System

Hi Jennifer, yes I do need surgery on my neck, C5-C6 & C6-C7 have severe DDD, circumfetential disc bulge and uncovertebral hypertrophy with moderate bilateral foraminal stenosis and central canal stenosis. But, I am afraid to have the surgery. To tell you the truth, my neck and lower back pain is nothing compared to my stomach pain, headaches, vertigo and hypotension, it's at the bottom of the list. I said I would wait until I cannot walk, Smiles! And thank you for your information with Amalgams. Unfortunately, but unlucky for me, July 2013 I had my two back left bottom molars replaced and within 2 days had a dozen quarter sized lymph/serum filled sores oozing on the back of my head and neck. I was diagnosed for MRSA. I spent 2 years on antibiotics which made me so ill, I pretty much stayed in bed for 2 years not realizing the antibiotics were actually detoxing my system of the mercury that I didn't know I had? Along with that my husband is an amazing pharmaceutical scientist who lives and breathes health, anti inflammatory everything, vitamins, fish oil, NAC, alpha lipoic acid, etc…trying to help me get better. I finally tested Negative September 2015 for MRSA but still have the sores show up for no reason along with severe Sweets syndrome rashes on my face, neck and chest. Of course I never get the face rashes when I am seeing a doctor, or I am in between doctors? Back in the day the sores lasted for ever and the face rashes too. But now, they will show up on a Friday and disappear by Sunday, which is great, but I want a cream called Finacea prescribed so my insurance has to pay for it, ($500.00), and without my new dermatologist seeing these darn things, I have to rely on oil of olay! So, what ever mercury was able to attach itself to my brain, stomach and other parts of my body should be the only mercury left. The second the white feelings were introduced, I had all of my amalgams replaced, (probably when I was pregnant with my son, ugh). I do have an amalgam purple tattoo where one of the left molars was replaced. I did end up with endocarditis and was hospitalized for a week on Vancomycin, thanks to some idiot doctor making it okay for people with micro valve prolapse to have dental work done without amoxicillian. I believe if I had taken amoxicillian none of this would have happened. Anyways, that is just one more of the 97 more illnesses I have. Thank you again. I was told that because of my small nerve fiber neuropathy, severe allodynia and peripheral neuralgia that, yes my legs will work, but the pain may not go away, and because my legs work more often than not right now, I will wait. I am glad that you are doing good. I understand completely how long it takes to get answers, TOO LONG. Kristin

Sep 11, 2018 · Dizziness for over 2 years. in Brain & Nervous System

I have a lot of health issues do to elemental toxicity poisoning by inhalation while working at a Biotech Co. 2010-2011. All the symptoms started immediately but I was told by the Chief medical officer that mercury poisoning was just a myth, so I never thought about it again until July 1, 2016 when it was confirmed. During the past 8 plus years, I have gotten worse but at the moment I have severe vertigo and orthostatic hypotension together. I can handle one or the other just not both at the same time. I believe that SNF small nerve fiber neuropathy is finally going crazyin my head. I just had an MRI. Because I have 2 screws on the right side and 3 screws on the left side holding my jaws together due to TMJ, the MRI was unable to see what it needs to see. Of course my Neurologist is on vacation. I truly believe I have MSA-c due to evidence from prior MRIs showing problems with my cerebellum and basal ganglia, side effects of either not being able to urinate which caused a very bad bladder infection or having to urinate with severe urgency. I have gastroperisis, lemmel's syndrome, 3 large periampullary diverticula doudenums pressing on my ampulla of vatar which makes having a bowel movement almost impossible. Luckily I have chronic diarrhea because none of my sphinchters work and my anal sphincter is the size of 5mm x 10mm with a hard stenosis, so if feces is larger than a small grape, I have to move it aside for the diarrhea to pass. I have trigeminal neuralgia, migraine headaches, daily headaches, every type of headache, my hands do not work at all and that is after having carpal tunnel surgery for both. My neck and lower back both have severe DDD, my neck needs surgery. I will say one good thing, the 10mcg/hour Butrans patch has stopped my nighttime neuropathy paun completely. My fingers still swell but I'm able to sleep. And even if I have insomnia, I do not have nighttime neuralgia. 8 years to find something to fix that! I still get shooting pains from my feet during the day. Oh, and I was just told that my ECG came back abnormal, so I will be seeing my cardiologist tomorrow. It would be nice to have one good day of no pain of any kind. And one doctor who could help with all of my problems. I see myself in a wheelchair very soon. More than half the time, my legs are completely numb from my knees down. These are just 10% of my medical problems, ugh! Thanks for listening. And now the time to get up and get dressed so my husband can take me shopping to buy groceries for my wonderful 27 year old schitzophrenic son. My son and I used to do this together for a fun outing, but I cannot drive anymore. Unable to eat any type of healthy food and to nauseated to want to eat, my weight is down to 100 pounds. Not good