I have orthostatic hypotension. I take Florinef and midodrine. I see a neurologist. I am wondering if this is actually MSA=Shy Drager type. My gait is wobbly, I have a hard time swallowing sometimes. I have over 100 stitches in my head from constantly falling (fainting).
I am also in stage 4 renal failure with the diagnose of IgA Nephropathy. Creatinine level is 3.4 currently.My neurologist says it is multisystem atrophy.
Should I get another opinion on this MSA? I need to know what will happen when I start dialysis, which looks like it will be soon.
Thank you for your time,
Oh my gosh...I have been diagnosed with orthostatic hypotension recently although I have been suffering with it for nine months I have seen five specialists with the latest one being an endocronologist. The trouble swallowing really stunned me. I have this too, terrible sweats..spking bp and dropping BP, vertigo. I have had two ER visits with stroke symptoms. I did not even mention the swallowing problem to this new doctor as I just thought it was reflux or my hypothyroid problems. I also feel like I have to urninate all the time...have been tested for bladder infections more times that I can remember now...always negative. I live way up in the mts...alone most days for hours...hubby works long hours. I have headaches most days...worse after eating. Everything worsens with physical activity. I am so fatigued and feel like **** most days. IF I could quit eating I think I would feel better. I have a lot of abdominal pain and lower back pain (burning pain) Doctor (endocronolgist) seems to feel it might be connnected to B12 deficiency or diabetes. My blood sugars have been good...so I am confused...he mentioned Hashimotos??????? I am on Synthroid 88 mcg for hypothyroid. Have had 1/2 of my thyroid removed due to tumors...benign.
I seen a Mennonite healer in July after being so disgusted with conventional doctors just dragging their feet and no diagnosis. He said I had the adrenal problem, already diagnosed ( I have high norepenephrine levels....624) and also stated all the other things the doctors diagnosed...except he added pituitary gland problems and early pancreatitis. He was amazing...in his early 60's and does iris analogy. I did not tell him any symptoms or what was going on. He diagnosed this all with iris analogy. He put me on numerous natural remedies...which having me feeling better...but not cured. He told me I was a very sick lady. I know I was..am..I felt like I was dying in June and July.....so much pain in my lower back and my abdomen....besides all the blood pressure issues. The doctors...including my primary doctor pretty much ignored my pain Did do a MRI and abdominal Cat scan to rule out adrenal tumor. Negative for adrenal tumor. Endo is not sure it is completely ruled out. I am so confused about this. The doctors are not very helpful.
The conventional doctors thus far have done nothing for me....nada!!!!!! So ....I am seeing the endocronolgist the end of September for my second appointment...if he does not help me out...I don't know what I will do. The natural meds help but so far they have not cured me. I am not in as near as much pain but still suffering. The OH is not going away by any means. I am on a natural med for Folate, B6 and B12. I don't feel as horribly fatigued as I was but still not 100% I need to have this BP thing fixed...I want my life back!!!! I can't even spend more than two hours with my grandchildren...drives my BP up. So anxious and nervous all the time...my mind and body will not shut down to rest. I seem to be having anxiety attacks a lot...especially at night. Does any of this sound familiar?
It sounds like I have very similar problems, you are not alone. Life is really hard, I've been living like this for 4 years now, I am 31. It is very hard to take care of my children, they are 9 and 11. I have not been diagnosed with a nervous system disorder, but I know that I have one, I do know my body....I get so nervous that I feel like I'm going crazy. I take Klonopin for anxiey and seizures, boy does it help. It will relax me if I take enough. I am not one to take pills, because I feel that's what got me feeling this way to begin with. Everyday it feels like I'm dieing, I always think today is the day, but then tomorrow comes. It's like a slow death with a lot of misery, but with no time frame. I am wondering if I will eventually have renal failure..?? No signs of that as of now, but it seems my sickness has worsened over the summer, just when I thought it was getting better. I cannot sleep well either, my anxiety levels grow at night, I just take my half of Klonopin and watch a little TV or rub my children when they are sleeping, because in my mind I don't know if I'll ever get the chance to do that again. I so know what you mean when you say that you want your life back...I pray that you will get some relief somehow, and I'm here to talk with if you'd like. God bless, Kristy
I am also new to all of this. Monnette and Mark and Kristy, your symptoms sound like things I've been going through but without the benefit of any real diagnosis except Fibormyalgia, some type of nerve problem (the dr never sent me to a neurologist, mind you, he just said that because of my burning feet I had some neuropathy thing), and Sjogrens. But I have been reading a book by a Dr. Murphree and he addresses the adrenal gland problems in much the same why your healer does, though vitamin and amino acid replacement therapies.
Kristy, I have 6 children and after number 4 I had a terrible time, just as you are explaining. They kept telling me it was "my anxiety" and I kept telling them, no, that's not my personality, there's something wrong!
Doctors, I am convinced, are now trained NOT to listen to the patient but to pigeonhole them into some group so they can dole out drugs.
I wish there were some better answers for all of us, but if you get a chance read some of Dr. Murphree's articles, there may be something in there that would help.
I have been trying the magnesium supplements and they have helped some.
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