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Mon, Mar 25 2:31am · Cerebral Venous Sinus Thrombosis (CVST) in Stroke & Cerebrovascular Diseases

Wow!! I started this thread back in 2011 – and here we are 9 years later still getting replies. I'm sorry for those who have gone through this recently – but happy to let you know that my health continues to do well. I had my CVST in 2010 and they have never really understood what caused it. I was on birth control, but no other risk factors. I have had no recurrences. I've done a lot of research over the years – happy to keep the conversation going for those who are new to this.

Mar 7, 2018 · Difficulty Breathing & Autonomic Dysfunction w/ PD & Congestive Heart in Parkinson's Disease

Teresa – thank you so much. I will look into these today! I think we need to start keeping a log – when she takes meds and when symptoms appear. Maybe that would help to determine if the "wearing off" plays a factor! Appreciate the reminder on that being a potential culprit. She is not on oxygen therapy. Nobody has recommended that, but good idea to ask. She's my girl – I'd go to the moon and back for her. This is a great little community and support system – grateful for the quick and caring feedback!!

Mar 7, 2018 · Difficulty Breathing & Autonomic Dysfunction w/ PD & Congestive Heart in Parkinson's Disease

@oldkarl – thank you so much for the reply. I'm really sorry you're going through this, too. It's hard to watch someone you love dealing with something so difficult. I really appreciate the information and I'm going to look into all of this right away. Mayo did test her for Amyloidosis and everything came back negative. I wonder if there are other protein disorders though as you suggest. I'll spend time on this today and will let you know if I have any follow up questions for you. Thank you, thank you. Sending you positive energy today!!

Mar 7, 2018 · Difficulty Breathing & Autonomic Dysfunction w/ PD & Congestive Heart in Parkinson's Disease

Thanks, Lisa. We've seen some improvement over the past few weeks. I think the lows aren't quite as low as they once were. She had lost a tremendous amount of weight, too. Normal for her is about 125 – 130 and she was down to 88 pounds. She's back up to about 101, which I think that alone is helping. The anxiety meds may have helped a bit, but the breathing continues to be a challenge.

Mar 6, 2018 · Difficulty Breathing & Autonomic Dysfunction w/ PD & Congestive Heart in Parkinson's Disease

My sweet mother (78 yrs young) has been hit with a myriad of health issues. It started with a Parkinson's diagnosis about 5 years ago. For all intents and purposes, she has done well with that. No tremors – mostly just minor balance issues and deterioration of her physical fitness. She used to be a gym rat and always ate extremely healthy. She doesn't move quite as well and I think has lost some motivation for living as actively as she used to. But – all said, she's done well with it. In the last 6 months she has just spiraled downhill. She was getting horrible dizzy spells (passed out cold 3 times), weakness in her legs, horrible pain in her neck and back – but the worst symptom that has started is difficulty in breathing. She struggles with this all day, every day. Sometimes it's debilitating and other times it is manageable. We've had her into every specialty at Mayo (cardiology, neurology, pulmonary) and nobody has been able to really understand these breathing issues. Congestive heart failure is being managed. Autonomic Dysfunction is being managed and the dizzy spells have ceased. Has anyone else suffered with breathing issues and have you found out what caused it? Her lungs seem to be working just fine, per her pulmonary doctors. We started her on a very low dose of anxiety medication thinking maybe that was it? Anyways – really at a loss and feel so helpless. Let me know if this sounds at all familiar with anyone else?? Thanks and wishing everyone peace and good health.

Sep 21, 2017 · Stiff Heart in Heart & Blood Health

Hi there –

My mother (76 yrs) is at Mayo Clinic trying to figure out what is causing her shortness of breath. She has Parkinson’s, but we didn’t think that was the cause. We found out that she has a “stiff heart” and will be taking lasiks to remove fluid. I’m trying to learn more – anyone have experience with this?

Thanks and well wishes,

Britt

Aug 30, 2017 · Breathing Issues, Weight Loss and Lack of Appetite in Parkinson's Disease

Evelyn – thank you for the nice note. When you say your legs feel like jelly – is it a weakness? My mom thinks she maybe has a nerve problem or something that is causing the weakness that forces her to sit down quickly to prevent collapsing. Maybe that is actually the Parkinson’s though? Sending you very warm wishes and hope this finds you feeling good today.

Aug 30, 2017 · Breathing Issues, Weight Loss and Lack of Appetite in Parkinson's Disease

Teresa – thank you so much for the thoughtful and thorough feedback. I read both articles and they definitely seemed as though they might explain some of what is happening with her. I really appreciate it. We have an appointment with her internist this weekend and I’m still trying to get her into Mayo. Your advice provided some good notes for me to ask about. Thank you so much.