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jaddico

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About jaddico

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  1. Thank you so much donna612 and mechamoss for your feedback. I will request Dr Jaeger. I don't want my time wasted. I am quite a complicated case and I have been through a lot. I live in Virginia and don't want the run around like I have experienced in the past with other providers before being diagnosed. I was diagnosed with Autonomic Nervous System Dysfunction in 2013 with other complications including a stroke ( I wasn't aware because I didn't know I had labile hypertension). The EDS was diagnosed in 2016 by a geneticist. I recently had hernia repair this past November had respiratory depression with anesthesia in recovery room requiring several doses of Narcan The nurses told me that I gave them a hard time ( They didn't listen when I warn them). This wasn't my first time with this problem. I ended up being in-patient rather than going home that day. Post op, my bowels and bladder decided to act up even more badly. I have lost 15 lbs since surgery unintentionally and I am quite miserable. I am suppose to have cubital ulna nerve repair but but I have put off any further surgeries for now. Its been horrible. I thank again you for your feedback
  2. I have an appointment in May with Dr john Morren at Cleveland. I am not sure if he is dysautonomia specialist . I have been tested x2 and have been diagnosed. I just been getting worst This why I am going for consultation for Autonomic Dysfunction (without POTS). I also have Ehlers Danlos Syndrome also. For those of you who have been to Cleveland Clinic in Ohio, which provider did you see and what was your experience?. Thanks you
  3. When I had similiar symptoms of metallic test in my mouth. It took some time to figure it out. I saw ENT and GI before it all made sense. I eventually lost my sense of taste then had problems swallowing with pain. This is when i knew this was far serious than I thought. i was miserable to say the least. it was due to worsening of GERD which resulted into esophagitis from taking high dose of ALA ( Aphla Lipoic Acid..great drug, just didn't like my body). It took weeks to see improvement after a change in proton pump inhibitor and increased dosage to twice a day . I have EDS as well and Autonomic Dysfunction. See GI for evaluation.
  4. I just came across this post through a search. Although few years old, its still pertinent to me. I noticed quite a few of us here have low ferritin levels. I do as well, requiring iron infusion because I cannot tolerate iron by mouth due to how autonomic nervous system dysfunction has affected my gastrointestinal tract. I see a hematologist who is clueless as to the cause of my anemia, low ferritin level and EPO level. The anemia has no known cause until I came across an old research article about anemia and autonomic nervous system dysfunction. Basically the anemia is CAUSED by the condition. It is the effect of the autonomic dysfunction on the hematological system. it causes a reduction in the production of mature Red blood cells in the bone marrow, It helped me understand the importance of anemia management to aid in my symptoms; I couldn't believe how low some of your ferritin levels were and none of you had iron infusion. It awful how some doctors are so clueless in management of conditions such as anemia , I hope all of you have gotten better care by now.
  5. Sorry to hear how awful you feel. You've got some great advice here. Pregnancy with my son at age 39 was miserable to say the least (two previous miscarriages and infertility ). I worked in health care and I had severe morning sickness, until delivery,. Dizziness did get better like others mentioned in 2nd and 3rd trimester. Resting heart rate in 140's but Inderal helped some. I was out of breath and miserable but nothing beats the feeling of holding my son in my arms. Delivery resolved almost all of my symptoms other the increase heart rate. I felt great which is what I"m hoping for you. Please check with your supervisor. Most employers offer sick leave,short term disability/FMLA. Work was one of my major stressors. I didn't, want to use all my leave prior to delivery but I had to do what was best for me and my son. I initially,cut back some of my work hours and supplemented with annual leave . I ended up on short term disability for 10 wks until delivery,which was overall better than using annual leave if this option is available for you. I wish you well and please try your best not to get discouraged. I'm cheering for you and praying for you. I know you will do what's best for you and your family. Best wishes:-)
  6. Thanks for all your advice and insight. I greatly appreciate this. I plan to check into the vascular Ehlers Danlos Syndrome.This diagnosis was challenging. It was first thought that I had MS since MRI revealed an non-acute stroke along with white matter lesions. These lesions resembles MS but they are actually vascular damages to the blood vessels. I have mild cognitive impairment via testing due to this. I have a lot of MS symptoms which confused my docs because of the autonomic involvement and damage to the white matter of the brain. I had all the extensive evaluation for MS and other conditions done. My CSF was negative which confirmed to my neuros that this was indeed vascular. I use a cane to walk due to right sided weakness and gait abnormality. My neuro-endocrinologist who diagnosed me with eh autonomic dysfunction picked this up ( the brain lesions and stroke was the cause of the autonomic dysfunction). Happy New year to all of you. Wishing you a year of better health
  7. Hi All, I have been diagnosed (as of 2wks ago) with autonomic dysfunction due to microvascular cerebral disease at age 43, which has caused me to have a stroke/mini strokes.. my blood pressure has been normal . Therefore having a stroke was deeply disturbing. I will get occasional left eye ache, which can be felt by gently pressing my eye and headaches .I saw my eye doc for it and she felt my mild eye lid drooping may be causing the muscle ache. I had my BP checked the last two times when l had this problem with my eye and it was elevated 160/110. Within few hours, my BP was back to its normal range of 108/70-120-82.for days now. Do any of you have this and if so how are you being treated in terms of your episode/sporadic BP. I see cardiologist in 3 wks. Thanks.
  8. Please take it easy. Sorry for your experience. I do understand how you feel. Navigating the health care system can be challenging. I guess if the doc there or your PCP knew ahead of time that you wanted to see other specialists at the time of your visit, then they may had arranged that for you before coming. Its hard to get appointments in such short notice with some doctors or clinics. Also if your insurance requires that you need a referral, then it has to come from your PCP, especially if this specialist did not find it warranted at the time of your visit. Remember testing negative at the time of your visit does not necessarily mean that you don't have POTS, especially if you are symptomatic. I have textbook Myasthenia Gravis and tested negative for the antibody which can happened and its known to do that. I'm sure POTS is also like that. Don't let one person's opinion on your health ever influence you. Seek another consultation, perhaps with my doctor who is closer to PA in Norfolk, Va Dr K Chemali ( use the "search" on this forum to locate info on him) Please stay strong. This is a starting point for you. Don't let this visit influence how you feel in negative way . You should see how I'm walking now. I call it the "drunken Penguin". No one can miss it now but it took 2 years of various neurologists who told me anything was wrong and they couldn't see anything wrong with how I walked.I knew something was wrong and would not stop. Dr Chemali diagnosed me with Myopathy. Trust me, no one misses my ataxic gait. I'm still going through extensive testings. Please wipe the tears ( you need them so you don't get dry eye syndrome..its not fun) and put a smile on your face. I'm proud of you for taking the initiative to go this far to seek help. I believe in you and find a doctor that believes in you as well. Best wishes and please and have safe trip back home. This is not the end but the beginning for you to find out what is wrong. Let this visit motives and inspire you to seek further help. Thank you hubby and let him know how much you appreciate him for supporting you and going to the appointment with you although it wasn't what you expected. Keep us posted. BIG HUGS
  9. Yes I can relate. I also have ataxia which worsen with increase walking. I'm using a cane now and going to PT. My gait has worsening over course of time. I was the only one who notice it initially. I thought I was losing my mind until I went to a zumba fitness class then it became apparent to every one and has not resolved since. It comes and goes (in severity) and can initially make a "liar " out of you because my first neurologist didn't notice it with multiple complaints by me.He will be surprised to see me now. I also have balance issues also. I have a diagnosis of proximal myopathy ( since Nov 2013, cause??? going through extensive work up $$$$$$)and right hemiparesis. A good neurologist will do functional testing for our muscle strength to determine if muscle weakness as the cause of your ataxia. I have history of small fiber neuropathy and will start treatment for Myasthenia Gravis soon after an eye exam this week. its been horrible for me. The leg started with the gait abnormality but now with some spasticity especially with exertion. Good luck and best wishes. Please keep us posted
  10. Great. I'm glad your daughter has musical talent too. Dr Chemali usually has a concert somewhere in the fall for all his patients and family. I missed it last year and he commented during my first appointment "don't miss it again" with a smile. I hope to attend this year. I hope you will find the cause for your daughter's POTS. I'm seeing him for Myopathy and Small fiber Neuropathy. The cause for mine is very complex and still on going, however Dr Chemali was the first and only doctor to diagnosis me. I can't tell you how difficult and frustrating it is when no one knows what is wrong with you and can't put a name to it . I grateful that he was able to do that for me. Best wishes again and keep us posted
  11. I saw him in November and was VERY pleased,. I've been waiting for years to get the proper diagnosis and he nailed it. I would have done cartwheels if I could. I was impressed. Then he did my EMG in December with a follow-up with his Physician Assistant (PA) in January which left me very disappointed. I will only see Dr Chemali from now. Furthermore, Dr Chemali is very knowledgeable, professional quick and doesn't ran his mouth a lot so you have to asks questions and he will tell you what you need to know and that's it.. He's not the type that will go into extra long conversations.he precise and gets to the point. He has patients that travels near and far to see him. Some of his patients are on this forum and they spoke highly of him before I met him. They all told me that he's quick and he very confident. He says what he want you to know and you can't pick his brain too much. Give him a try to see how he can help your daughter. Let me know how things go and best wishes for you and your daughter.
  12. Buffy, I'm so sorry for your sister. I know how it feels because I'm also dealing with this. Its a pain that cannot be described to anyone who has not experienced anything remotely close to it. I wish I have some answers for you but my thoughts are with your sister and family. I plan to inquire about IVG during my next appointment in January and Feb with my specialists. Keep me psoted. You are an amazing sister.
  13. MakeMeErised, I'm glad that you are getting good outcome from your Chiropractor. Mine wasn't so great. After years of suffering from neck pain and stiffness, one of my friends suggested that I see her chiropractor. I trusted him and felt that he could help me. I kept getting more pain as time progressed and he kept telling me that I needed more time and the pain was due to the adjustment and its working. Well I ended up with C6-C7 spinal cord compression requiring screws/plates and bone graft. My neck from C2 down has diffuse degenerative disc disease (DDD), bone spurs and variosu levels of herniations. I've been told by others that the chiropractor should had never touched my neck since I most likely had DDD resulting in more herniations through adjustments. I know there are great Chiropractors out there, however my past experience has made me cautious. Furthrmore, I will never go to a chiropractor again. I pray for great outcome for you. Please keep us posted. Thanks for sharing your story with us
  14. I also have endometriosis and cannot tolerate BCP with estrogen. I can only use progestin only pills (POPs). I had POTS during pregnancy. I have sinus tachycardia with shortness of breath on a regular bases but not as bad as when I was pregnancy. Some of my symptoms are also due to Myopathy and small fiber neuropathy. I also noticed that a lot of women on this forum have endometriosis. I thought that was an interesting correlation before this thread.
  15. Hi all, I'm still in the work-up phase for finding out what is causing me to have myopathy. I also have small fiber neuropathy and degenerative disc/cervical disc herniations with surgical repair at c5-c6 to list a few. I found out today that my EMG was nonspecific for myopathy. I'll get my details next month during my follow-up for all of my results including blood test. Just wanted to know if any of you with diagnosis of Myopathy 1.was picked-up in your EMG 2. EMG non-specific or 3. normal. Thanks for your time and feedback
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