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Everything posted by jaddico

  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 dep
  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 A
  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 conditio
  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. Ple
  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 condit
  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 nor
  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 th
  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 ( s
  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 yo
  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 prec
  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 he
  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
  16. I've had the similiar symptoms wchich comes and goes as well and was recently diagnosed with small fiber neuropathy which can cause what you are describing.."Dyesthesia"
  17. I was on it when I was pregnant in my 3rd trimester with sinus tachycardia ( resting heart rate over 140's) . I felt awful before I started and it helped me a lot. I was on bedrest and could not tolerate much of anything due to the sinus tachycardia and shortness of breath. Morning sickness until delivery didn't help matters either but propranolol was a life saver.I restarted immediately after my C-section because my heart rate was still in the 130's resting . I was on it for few weeks after delivery since its not advisable to stopped it abruptly, I gradually cut back and finally stopped
  18. Hi Everyone, Just wanted to give you some updates with my first visit with Dr Chemali. I found out that I have muscle weakness in my legs... worst is my right leg through neuro exam which is causing me problems with walking at times ( see my initial post). My legs feels like I've climbed hundred steps in a short period of time. I also have weekness in my face and upper extremites, which he felt maybe due to my neck ( I have hx of herniations and degenerativae disc and past neck surgery) and general hyperreflexes. He also diagnosed me with small fiber neuropathy and myopathy. We are planning t
  19. Corina, Thank you! Hanice, I did tell them that I have neuropathy. I was told that I have a "complex case " that dr Chemali will be the one to work-me up. I also went to the ER because I never had it my walk so pronounce and so spastic. It was so difficualt to walk and my family was panic due to our family history of extensive stroke from ages 35 and early forties). I'm 42 and I don't have issues with high BP but my BP was up yesterday due to difficulty in walking and just worried. Alex, You are amazing. Keep up the good work. I thank you so much for going the extra mile for me with this g
  20. Just wanted to give some update. I has more problems with walking with the right leg this week-end. Was seen in the ER and was diagnosed with Ataxia. CT without constrast was normal ( I has severe reaction to constrast in the past) . I will get more answers hopefully in November. Thank
  21. Hi guys, I have been waiting since June to see our local neurologist Dr Chemali. My appointment was reschedule from by his office from sept 17 to Novemeber 1 due to expected travel . I was very disappointed. To give yu a little ino on me, I have history of numbness, enlarged optic disc/nerve, dry eye syndrome with lacrimal duct plugs neuropathy/ unusual sensation and pregnancy induced POTS. I had abnormal QSART test and excessive and unusual nerve fibers with skin biopsy from my right ankle and RT hip. I have had normal neuro exam except for my right arm due cord compressiona and had sp
  22. Gemma, I had history of shortness of breath, feet neurpathy , dizziness, increase heart rate and heat tolerance years before pregnancy. I had two abnormal pulmonary function test and my heart rate was high with activities but no one could understand or comprehend why. My doctor thought it was allergies , anemia and possible asthma . These symptoms came back with a vengence and were very bothersome during pregnancy. After pregnancy, the neurpathy wouldn't go away causing major work-up for dysautonomia and small fiber neurpathy. I will see a specialist next month for more answers. I just know t
  23. Gemma, I recommend that you see a reproductive endocrinologist (infertility specialist). Your history of miscarriages and difficulty in conceiving in over one year makes me concern with infertility. How do I know..I also have infertility due to medical reason. I have Pituatary problems, fibroids and endometriosis which caused me multiple miscarriages. I have son now (almost 3) and I'm 42 . He's here due to infertility treatment and I Thank God everyday for him. I had terrible POTS during my pregnancy, it was worst during my 3rd trimester and I would never forget it. I had severe morning si
  24. Xanxa is use for anxiety and panic disorders in addition to other medications. It is also highly addictive and has high street value. It is a controlled substance and cannot be mix with alcohol. If it's needed medically and there's no other options other than Xanax then use with caution. Discuss with your doctors for other alternatives for sleep and muscle relaxers that may not be come habit forming. Most doctors are quite strict with prescribing or overuse of Xanax,while others gives it out wihout much thought, which is an absolute NO. Xanax has come to a lot of scrutiny due to celebritie
  25. Melanie, I'm very sorry to hear about how this condition has affected you also. You are in the right place with all the wonderful people here at DINET. Everyone has been so supported and kind. Reading your story left me speechless, therefore, I needed time to absorb what you have gone through before replying. I admire your courage and strength to share your story with us. Stay stronge and I'll keep you in my thoughts and prayers.
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