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Everything posted by Agreeky

  1. Thanks everybody, I am due to get a skin biopsy to check for small fiber neuropathy. I have thought about lupus but it has been ruled out. ESoskis how do I go about further autoimmune testing? I think my doc has run most tests she can think of. Looneymom thanks for all the info as well. I go to a dysautonomia neuro in Boston but she had never run these additional tests? Thank you all again..
  2. Hello everybody. I have not posted in a very long time. I stopped looking for answers but I thought I would give it one more shot... Symptoms below.. Left hand and foot tingling for almost 3 years Upper right foot numbess comes and goes Night blindness (vision gets pixilated) Facial numbness comes and goes Heart rate jumps per standing also comes and goes Breathing issues. Paper bag feeling left diaphragm hard to explain Muscle fatigue Abdominal pain Muscle jerking Sleep apnea Vertigo that comes and goes Hands swell up as well as feet Eyes burn I could go on and on. I have had multiple brain and neck MRIs. Hundreds of blood tests and CT scans. Evoked potential test,endoscope,colonoscopy, and breathing tests. Only thing founds was elavated ANA and very low viatamin D. Also possible obstruction per breathing test. Any alternative ideas please share!!! Thanks : )!
  3. Thanks for all the information Rachel. Sorry I took so long to respond. My voice only gets a little hoarse sometimes. But I think I could have what your son did. I went to the lung doctor today and he thinks it's vocal cord dysfunction. He wants to send me to a specialist that looks at that part of your throat. Also, I'm getting a special CAT scan that does images of me breathing in and out. I do not know what situation triggers it. I have noticed that I get in more at night when I'm at home. Could be because of certain triggers in my house. I also do get in more after I exercise. I am wondering If GERD can cause vocal cord dysfunction. And I do have that. Hopefully it is something easily treated : (
  4. Dkd the local Pulmo has been kind off jerking me around. I think it is time I had a bronchoscope... He wants me to have a neck ct. Hate getting all that radiation though... Have had so many xrays and other cts. Looneymom I have read up on that. Did he have voice changes?? I begged the ENT office to see me when I had the whistle bad.. But of course they could not see me. Nothing gets accomplished : (
  5. This is a very helpful thread! I was wondering this myself. I wake up with head rushes and other rather odd events. I never put it together my bp could be dipping. I know when I lay down my bp drops to 90/58 so I cannot imagine when I sleep.
  6. So as some of you might know my breathing issues has been the vein of my existance. Two pft have indicated I have upper airway obstruction. But two different ENTs have checked down my throat and see nothing abnormal. Anyway, sometimes I get a whistle when I breath out. My bf heard it the other night it was so bad. Now it is gone again... I was terrified it was a stridor, but I did research and those almost always occur when you inhale. Mine is on exhale. Any theories?? I have acid reflux that comes to my throat, maybe that cause irritation? I would love input..
  7. O yes I know. I have a huge envelope of all my testing! They neglect to tell you so many things it is crazy...
  8. Hanice I did have low Viatamin D for a while but now it is normal again. I never been told my other levels were off. No I have never tried it, I would be willing to try it though.
  9. My two PFTs indicated upper airway obstruction. My ENT checked down my throat though and it looked fine.. Lung doc suggest cat scan but I never went. Already been exposed to very much radiation with other tests. I want to push for bronchoscope though...
  10. Welcome to my world. I cannot tell you how much I have been disappointed. How many doctors I left and went and sobbed in my car... Nobody knew or yet knows what I have. I kind of gave up looking and have been happier. With your symptoms and findings I would really push your neuro doctor if anybody. Have they ever talked to you about MS? Do you have tingling or eye issues?
  11. Akgirl/lissy. I had one neuro tell me my face numbness was due to migraine. Personally, I do not really buy it. Only because my face was on and off tingle and numb during the day for 2 months! I doubt I had that many migraines. I often wonder what I have. Kind off gave up searching.
  12. Dkd looks like were in the same boat. Have you been checked for small fiber neuropathy?
  13. Thanks for the advice Hope! I am thinking I will go to an ENT in Boston. My local ent only gave me a hearing test which came back good.
  14. I have thought MS too. 3 clean Brain MRIs have said different though. My left hand has tingled everyday for 15 months. My face was tingly and numb for 2 months. Other parts of my body too. No answers.
  15. I have gotten them tongue, eyelids, calfs, thigh, buttocs lol. Everywhere even abdomen. My left thigh twitched 2 weeks straight once. It really has no pattern or trigger for me. My neuro told me their benign. Look up bfs if you have not yet.
  16. I get them a lot. Come and go though. Even had a twitching tongue and got checked for ALS. You should look up BFS online it is benign twitching.
  17. Maia that happens to me all the time! It has almost caused me to go through a few red lights! Really scary. I am glad you knew the cause. I am on no meds. Hope I found out soon.
  18. Yes it does check for a weakened blood vessels. I am not sure how much bloodflow it can see though? I know mine was normal last summer. But I do not know if that means the blood flow is okay. Also, as Alex said it could be different while I am standing up.
  19. Thanks guys. Good points Spinner. Could just be a trend, but I would be willing to try it. MomtoGiuliana my doctor was saying something along the lines if that article. I guess she did have a good point.
  20. I just felt great for a good two weeks. Then I lifted with my trainer and now I feel terrible again. So I guess that finally helped me figure out if working out helps or hurts...
  21. Thanks Alex! I will def mention this to my neuro in September. Btw I had an MRA last summer since my Dad has had an aneurysm. Is it similar? Hope, I went to the ENT but he only gave me a hearing test? Said it was good and sent me on my way. Is there any way to check for it? U had horrible ear infections as a child. Not sure if that means anything.. But I have looked into Menieres I could have it I think. Katybug thanks for the suggestion. I think that would be the next step after ENT. Westernmass what you have is likely benign positional vertigo. That could be inner ear as well. I had that kind twice after a flu.
  22. Thanks Alex! I have never heard of a transcranial doppler. Which actually surprises me because I have spent endless hours on the internet lol. My vitals are usually normal when it happens. I really wish I knew what was going on. Been 15 months of weird symptoms : ( I do get a strong pressure in my head when I stand. Could this be blood flow related?
  23. Hey all. Since January I keep having dizzy spells. In January and February I had a week long bout of benign positional vertigo. Now I get dizzy all the time though and it is not related to position. Also, unrelated to bp or hr. It always looks like objects are moving when there not. Been really bad last few days. I will be talking to somebody and I will get a rush of dizziness. It does not affect my walking I should add. I have had MRIs neuros etc. So is this still considered vertigo? What could cause it with clear MRI? I do get a ringing and deafness in my ears sometimes... Wonder if that could affect it?
  24. Marigold a couple months back I did a whole topic on eye issues. Another girl on this forum had the same problem as us. She mentioned something about closed eye hallucinations, but there is little literature on it. I find it a bit scary. Doctors have a hard time believing me. I am going to a retina specialist in October. Doubt I will get any answers though. I have noticed when my symptoms subside I do not get it as bad though... Very odd!
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