Jump to content


  • Posts

  • Joined

  • Last visited

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

jbenz1772's Achievements


Newbie (1/14)



  1. Angela, Have you spoken with an interventional neuroradiologist? There is a procedure called sclerotherapy where they inject a sclerosing agent and the internal surfaces of the malformation burn and scar down, inhibiting the pooling of the blood. I'm assuming the malformation is intracranial? Not sure where you are located, but Froedert Hospital in Milwaukee, Dr Zadat is excellent or would be able to refer you to someone in your area. Good Luck, Jennifer POTS Small Fiber Autonomic Neuropathy
  2. I've never had the testing, nor did I realize there were any for the "brain fog" issues. It seems to come and go with my flare ups, and those days I usually just call a bad brain day. It ranges from disorientation, stuttering, word finding issues, to um...staring into space trying to make sense of what is being said to me. Just started a new job, in a leadership position. Try explaining the stupid look on my face, or the frustration trying to find a word that I should know but won't come to me....just say "sorry, brain issues today" Jennifer Small Fiber Autonomic Neuropathy POTS
  3. I was seeing Dr Peltier as well at Froedert. Then she called and said she was moving more towards pain management and recommend I see Dr Chelimsky and he was specializing in Automonic Disorders. Unfortunately before I got the chance to make an appointment, (or rather fortunate) I took a new job and moved to Orlando. Seeing I'm one of the few that tolerate heat better than cold, Dr Peltier thought the move would benefit me. Except for the freaking air conditioning I'm doing fairly well and looking for a neurologist in the Orlando area. So if anyone has any recommendations for down here I'd be grateful since I'm due for a tune up. If I were still up there in MIlwaukee I would have followed up with Dr Chelimsky. Good Luck! Jennifer Milwaukee transplanted to Orlando POTS Small Fiber Autonomic Neuropathy
  4. I also seem to do worse in the cold than the heat. For years before diagnosis my husband always made fun of me for always being cold. Always covered in blankets. He'd always joke..."you need to see a dr..there's something wrong with you" I just always thought I was just cold. HMM guess there was something wrong with me. I'm not faring so well in this season change either. The last week or so has been hard. Jen
  5. It is my understanding that my POTS is a result of my SFN. And my SFN is idiopathic. I didn't really get a whole lot of explaination from the neurologist. She just put me on meds for the symptoms and told me to stay away from stress. I see her every 3 months to see if they are helping.(unless she cancels due to meetings.) I just coast. Most of my info I get from this board. Since our last appt, the digestive stuff(which I thought I wasn't going to have) have gone into hyperdrive and I want to talk to the dr about mestinon. Seems to me stress and hormones are my biggest triggors. I get burning, icy-hot feelings in my feet and legs, numbness/tingling in my right hand and fingers. Muscle twitching in upper arm and thighs,leg cramping and pain which is now happening in my gut(bizarre),constipation until my period, then diarrhea and nausea, also get chest pain. This is in addition to the POTS stuff, tachycardia, syncope, migraine aura. ChristyD, My sweat test revealed complete sweat loss from the waist down and 40% from the waist up. I only sweat on my wrists and my hair line above my forehead. Funny I have a harder time in the cold weather than the hot. Jennifer
  6. Enko, I've told my neuro POTS dr. a few times about the hives. She didn't have a response nor concern over them. Jen
  7. I too get hives. Sometimes more than others, I can go a week or so without. But mine can be anywhere, but the most annoying is on the palms of my hands or soles of the feet. But most often get them on my arms and sometimes on my face. Once I got into a heated conversation with my boss about a suboptimal coworker and into the conversation started to scratch and realized I had them all the way up my arms. For me it may be an adrenaline release. But the hands and feet I usually wake up with. I can't really relate it to anything.
  8. I too can be added to the list. I had minor constipation every month until about 2 days before period when I would completely clean out naturally probably from the hormones. In the last couple of months the constipation has been causing significant pains about an extra 5lb weight gain because I haven't gone to the bathroom. I talked to my neuro yesterday, and I am going to try Miralax until my appointment with her next Thursday. Then I believe we are going to discuss Mestinon. So I guess we'll see. Jen POTS, Small Fiber Autonomic Neuropathy, aura migraines midodrine, propranolol, lexapro, torodol
  9. Dino, I have POTS and Small fiber autonomic neuropathy too. I had true migraines early on when going through puberty, but over the last year and a half I had what my neuro calls "complicated migraines". I too have not much in the pain category(mostly on the right side of my neck, behind right eye), but have all the aura symptoms. Mostly the right eye visual disturbances, but also the cognitive impairment, and stroke like symptoms(right sided weakness, tingling and numbness). Since my diagnosis in January my neuro put me on propranolol and midodrine and I've really only had a handful of migraines. Jen
  10. Lizababy, Reading your post really put words to how I feel sometimes. I get that group setting feeling too, where I start to feel sick from the trying to concentrate through the noise and such. Sometimes I just can't do restaurants or family/friend get togethers. And when my mom starts snapping pictures watch out, I have to go into a room by myself. Jen
  11. Hmmm choices..choices. I'd probably go with the fatigue. But I realize that most the time I'm mentally exhausted from trying to mentally push through the dizziness. Then there are the days that I could totally give up the muscle cramps/twitching/pain. Jen
  12. Hi, I voted other for triggor. I have small fiber neuropathy that my neuro believes is the cause of my POTS. But the SFN is of unknown etiology so far. Jennifer
  13. Hi Naomi, I was confirmed with the small fiber neuropathy and POTS with my neurologist through other tests rather than the biopsy. I had a thermoregulatory sweat test, which was very humbling in a disposable bathing suit. And yes, they take pictures. And the QSRT test as well as the TTT. All were positive. My neurologist said most the time SFN is idiopathic with no explaination for onset. Very frustrating. But mine is complete from the waist down and 40% from the waist up. The neurologist that read out the results said the POTS is because of my extreme lower extremity involvement. So mine is mostly muscular twitching, tremors and pain in my feet and legs and right fingers/hand and left upper arm. As well as the shortness of breath, chest pain, dizziness and brain fog. Hope you find your answers! Good luck! Jennifer
  14. I get the shower/leg burning sensation too. But I'll get burning in my feet where it feels like I'm walking with sand in my shoes, when that happens it usually moves up my legs and then get muscle cramps really bad. Have needed help getting out the car before when that's happened. I also get the pins/needles feeling and what I call the icy/hot effect. This is where it feels like someone just slathered on a clump of icy/hot onto a random area on my skin. I too have the dead leg/foot or arm feeling. Usually worse when I'm tachy. Jennifer
  15. Alicia, I have had the same teeth chattering...all over body tremors a handful of times. It seemed to come on with stress as well or after an exhausting day. Once I just walked over to next door neighbor for a visit and all I did was walk in the kitchen and it hit. I held onto the counter while the shivers turned into tremors. A few weeks back my boss asked me if I would consider relocating and the stress hit and immediately my eye started twitching then my arms and I ended up in the bathroom crying(mostly from embarrassment and lack of control) This disease does stink. I've learned not to fight it, lay down and let it run its course. Jennifer
  • Create New...