Will_I_am

My Neurologist started some blood tests which came back negative on ANA and some positive ANA 1:320 titer for lupus and connective tissue disease. I was then referred to a Rheumatologist who then oredered his own testing and everything came back negative. I was told I didn't have any of his diseases and he had nothing else to offer me. In 5+ yrs I have had Doctors scratch their head with no idea what was causing my symptoms except maybe Anxiety and Hypertension. Even though my blood pressure would drop below normal. One GP said he needed help and did not know how to get my bp in control. I see a Cardiologist who specializes in Dysautonomia now and I am hoping he figures out what is causing my symptoms...if interested in my symptoms you can read my post Dysautonomia? POTS? or what? I hope that in knowing what the diagnosis is maybe they can help if aware, but I'm afraid most Doctors have a quota and unless specializing in that specific disorder may not want to take the time to figure out how to treat you. There are few who don't overbook and try to get as many in and out as possible....that I have seen. Good luck,Best wishes, and I hope he/she is one of the exceptional doctors who really takes the time and attention to treat your son..

Godsgal, Sorry I can't help.....I belong to the What is it club? I too have the bp swings like that at home,work, or Doctors office. I also have some of your other symptoms too but not the hives or tumor. You said the Doctor did blood work has he done an ANA Titer blood test for lupus etc. Look up Lupus and autoimmune diseases and compare symptoms with yours. Have you seen a rheumatologist? Hope you feel better and can get some sort of resolution.....Best of luck.

Hi Targs66, Hey,how is the weather over there? My wife went to Oxford for a while and said it was misty/dreary most days but loved it. Wow, Very interesting, I am in the grey area for POTS with a diagnosis so far of what he thinks ( Dysautonomia Doctor) is Idiopathic Tachycardia. My TTT was abnormal but not enough to meet the criteria for POTS. When taking my TTT they did not administer any drugs and I was on my Beta-Blocker ( Metoprolol )100 mg that I have been taking for yrs for fast bpm and severe High bp. I am also on Metoprolol SUCC ER for high Metanephrines and or Catecholamines but not high enough for a Pheochromocytoma.....they did do all the testing and no tumor was found. At present I am waiting on lab work for results to see if I have had any changes or any underlining conditions causing my Diagnosis (?) and symptoms. I have been having symptoms for 5 yrs or more now with the same results, the Doctors don't know what to do with me...I have high bp, highest ever was 173/135 and the lowest was 73/56. General Practitioners tell me my symptoms of Dizziness, loss of balance, Blackouts, sweating,flushing vision problems,migraines, etc etc are vague. I am now seing a Doctor who specializes in Dysautonomia but still in the dark as you were on what I have. Hope you get to feeling better. Please tell me more about your symptoms and Prognosis with NMH and is it still in the Dysautonomia diseases/syndromes. It may have nothing to do with me but it might.....see my post Dysautonomia? POTS?, Or what? I am new to this forum and to Dysautonomia and I am not sure if I meet the criteria for Dysautonomias............Anyone else Know about NMH to share? Billiam

I kinda know what you are talking about now,right before I had an attack of sweating I got a sensation similar to pins and needles but not quite the same . I can not really describe it because to me the pins and needles are a little more painful. I had an attack of sweating last night, it started with dizziness then a weird sensation of very mild like stinging then the dry/sticky mouth, nausea,claminess, and sweating. My attack what ever it's called wasn't that severe last night but I have had them before were I was hugging the toilet like a drunk and dripping sweat onto the floor in puddles and my clothes were soaked. Also during the summer I am the only one sweating profusely. My problem is I guess I ignore the synptoms before hand and try to carry on until it hits me square in the face. I am now starting/trying to stage symptoms with events for the Doctors. Also so I can curtail them if possible. Before I just tried to man up/Soldier up and go on feeling like total crap, now I feel like a weenie at times because sometimes I just can't do it anymore. Hang in there! Billiam

Hi Rachel, No he did not know, but it seems he should have, when I did question him about it he said if I was off the beta-blocker it may have taken me out of the grey area. Yesterday he decreased my Beta-Blocker dosage from 100 mg to 50mg due to low blood pressure as noted above but I made sure he was aware of my high blood pressure, anyway my blood pressure is increasing tonight and my bpm has jumped as I checked so far..from 105 to 142 bpm it was averaging around normal range withn spikes up over 100+ . This is just one day and I will try to keep track of it more now that I have seen the jump. who knows? Thanks for the reply and support. Billiam

Hi Northerndarlene, I see the sparks,fireflies, or floaters which I believe they call them.I have not had the TV like snow vision but have Blackouts ( not fainting but loss of vision). All of these occur at anytime night or day and can happen looking in any direction. I too have seen an eye Doctor to rule out problems associated with my dizziness,migraines, etc and was told all was good except I have dry eyes and corneal erosions. I have not been prescribed or know of any known remedies for it. Good luck.......anyone else know?

Hi to all, I also suffer from Migraines. I too have been to Neurologists and was told to get off the caffeine and otc pain meds which I did. I was prescribed Topamax, and some other prescribed meds that I don't recall now. None of their methods worked so I went back to caffeine( Dr Pepper),otc pain meds, heating pads,cold packs,long hot showers and just enduring it with lights out and trying to sleep it off....matter fact yesterday was a killer migraine day. Best of luck to all and hope you find a solution.

Dani, I can relate to the stomach/intestinal pain and issues from having Crohn's disease. I do know if it is severe diarrhea you will dehydrate which will cause low bp. I have been hospitalized for days due to dehydration. Make sure you drink plenty of fluids such as Gatorade, Jello, Popsicles,Chicken broth, and soups nothing heavy to irritate the stomach and intestines and nothing red in case you have to go to the hospital.If you can't keep any liquids down you probably need to go anyway. STAY HYDRATED! I do not know how this relates to POTS....not informed enough yet. Take Care.

Thanks Dani, I just decided to check my bp again this last week and it had been months since I had checked it. It just didn't seem to matter what I got until they saw it with a reading at their office, it was almost always high or average with a few low ones that the doctor dismissed as that the nurse must have measured it wrong. Anyway that is why I came here for some answers and if I should question my Doctor more on taking meds or not during testing. My new Doctor is a cardio specializing in Dysautonomia he is the one that has done all the testing lately. That is why I am looking for any advice on it. He says I have Idiopathic Tachycardia and Pre-Pots but there is no such thing as Pre-pots....well I am feeling like the idiot part, maybe a Pre-Idiot. LOL! Hope you get to feeling better too and keep in touch even if it's just to say today stinks. You will be in my prayers tonight, can't hurt. Thanks Billiam

Mine started around 2005...at least to the point where I could not ignore it anymore. I am assuming mine Is at it's worst during the heat and in Texas at this time of year it may get up to 80 degrees or down in the teen's so I have not really paid attention to see if weather is a factor. I do get tingling sensations in my legs,feet,and hands with a feeling like the ground is uneven and I am off balance. It is a weird feeling like I am drunk but have not been drinking. I have not had long periods of remission just short ones of maybe a week or two or just a day or days. I am new to this Dysautonomia thing and can not give you much advice but I would definitely see your Doctor if concerned at all. LOL, I'm still trying to figure out what my Doctor is trying to tell me. See my discussion in the forums for Dysautonomia,POTS, or what for the symptoms I have. Best of luck! Billiam

Thanks for the info... any advice is helpful. I wonder at times with the symptoms I have and as many Doctors as I have seen if it is in my head/psychological. But I'M not hearing any voices yet...haha. Are these symptoms typical as well? What is your long term prognosis? Any luck in it getting better than worse? I wish you good health. Thanks again Mark ( Billiam)

Hello, I am new at this and hope it comes out correctly. I have a recent Diagnoses of Idiopathic Tachycardia. I am not sure I understand if this is Dysautonomia and I'm a little confused with the testing and the results. I will start out with a short version of the Doctor's report. The Tilt Table Test shows exagerated heart rate response to Tilt however, it does not meet the criteria of POTS. The heart rate increased between 15-30 bpm. However over 30 minutes the heart rate did increase by 30 bpm and there was instability in the Cereberal circulation as well as blood pressure. Pretty much he believes it is Idiopathic Tachycardia. Q sweat is normal QST and Emg are abnormal The 24 hr bp monitor shows an avrage bp of 126/80 Echo is normal, no left ventricular Hypertrophy. There is mild Mitral and Tricuspid Regurgitation. Autonomic testing is quite normal with normal four phases of vasalva maneuvers. His loop recordings consistently show Tachycardia. There is Sinus Tachycardia, this occurs during pretty much with all the spells he is sending in. The Doctor said I was in the grey area for POTS. It just so happened during the Tilt Test and some of the other testing, I was having a good week. I also read on this website that in doing the Tilt test you may need to stop certain medications such as Beta-Blockers. I don't know if it really matters or not in diagnosing Pots whether you are taking them are not during the Tilt test but I was on mine which is Metoprolol succ er 100 mg 1x a day, I was given this prescription by a previous Doctor due to extreme high blood pressure and an average heart rate of 120 bpm. I also have some of the reports from my testing and they are as follows, Nerve Conduction test 1. CMAP Ampllitudes were diminishedbilaterally. Motor Nerve Conduction in both lower extremities showed slowing. 2. Sensory Nerve testing in the lower extremities showed absence of responses and absentSensory Nerve Conduction. 3. A needle EMG exam of lower extremities showed mild denervationchanges in both extensor Digitorum Brevis Muscles. Basically findings showed electrophysicologic evidence for a mixed Sensory Motor Peripherial Neuropathy. Sonographic findings of the Thoracic and Lumbar spine were to lengthy to list showing edema and swelling in lower lumbar muscles and trauma etc, no known cause of this. Q sweat on the Doctor's report noted normal. Q sweat report findings were; 1. Forearm resting output 41 Reduced Response 2. Proximal leg resting output 39 Normal Response 3. Distal leg resting output 36 Normal Response 4. Proximal foot resting output 44 Reduced Response Yesterday one of the Nurses said on my report it said I had hypovolemia but I do not have that on my report. My Symptoms; Dizziness/light headed, loss of balance,nausea, blurred,double vision and problems focusing,slurred speech, heart palpatations-fast,hard,skipped beats,shortness of breath, trouble finding the right words at times in conversation etc, dry mouth,dry eyes, painful and red eyes, Migraines, muscle spasms, chest pain, muscle and joint pain, excessive sweating, bloating, stomach/intestinal pain, extreme fatigue, weakness, blackouts-not fainting-loss of vision,hypertension,hypotension, flushing, clamminess, swelling of hands, cold feet, upper, lower back,neck and shoulder pain ...maybe associated with disk problems and Brachial Neuritis of the right shoulder. Legs feel weighted at times, low body temperature average 97.2, heat intolerance but I have always had this but seems to be worse, chills on occassion, slight unexplained fever at times, frequent sinus infections. Example of bp readings; 1-13-11 these are the standing readings unless noted 1. @ 8:15 am 83/61. 2. @ 8:30 am 97/70. 3. @ 8:42 am 95/70, sitting BP was 108/77. 4. @ 10:00 am 100/69. 5. @ 11:49 am 105/77. 6. @ 12:30 pm 119/84. 7. @ 3:29 pm 105/76 pulse 105, taken +/- 20 minutes after after walking for an hour, I was trying to shake off fatigue. 8. @ 3:42 pm 100/78 pulse 105. 9. @ 3:52 pm 116/91 pulse 108 Seated. 10. @ 5:30 pm 147/101. 1-14-11 1. @ 8:10 am 90/71 standing. 2. @ 11:23 am 120/93 pulse 78 standing. 3. @ 11:32 am 110/84 pulse 86 standing. 4. @ 11:34 am 129/95 pulse 78 seated. 1-15-11 1. @ 9:00 am 79/56 pulse 108 standing. 2. @ 9:05 am 107/76 pulse 93 seated. Current Diagnosis; Idiopathic Tachycardia, Crohn's disease in remission, GERD, Brachial Neuritis of the right shoulder, Hypertension, controlled Disbetes,Sleep Apnea and Rest less legs but has deminished after taking Lyrica. Medications, Metoprolol was 100 mg Doctor reduced to 50 mg after noting my low bp even with high readings such as 150/110, Aciphex, Lyrica,vitamin B12, and Alpha-Lipoic Acid. I know this is lengthy but maybe someone has similar experiences, advice or thoughts that might be helpful. Thanks, Billiam