[KateKline]

Oh please help! My THIRD neuro doc yesterday told me he thinks I have Parkinson's......I have been told I have small fiber neuropathy by neuro doc #2. I believe, after doing some reasesrch today, that I have a Parkinson's like disease. I have a brain MRI scheduled for Monday.

My symptoms have been steadily getting worse since a car accident a little over a year ago. I feel like someone is shaking my insides, tons of pressure, left groin seizing, trouble walking, left arm doesn't swing, freezing cold feet, major digestive issues, CANNOT fall asleep! It ALL amps up at night. And the ringing in my ears!!!!!!! Oooooooh! I am surprisingly not in pain. I just CANNOT get comfortable. Oh, did I mention I have IC? (Interstitial cystitis.....bladder disease under control presently). Uuuuuuugh, sorry......I'm sooooo overwhelmed.

So, I think I could possibly have Multiple System Atrophy....is ANYONE on here familiar with MSA????

[zkrp01]

Originally Posted by KateKline

Oh please help! My THIRD neuro doc yesterday told me he thinks I have Parkinson's......I have been told I have small fiber neuropathy by neuro doc #2. I believe, after doing some reasesrch today, that I have a Parkinson's like disease. I have a brain MRI scheduled for Monday.

My symptoms have been steadily getting worse since a car accident a little over a year ago. I feel like someone is shaking my insides, tons of pressure, left groin seizing, trouble walking, left arm doesn't swing, freezing cold feet, major digestive issues, CANNOT fall asleep! It ALL amps up at night. And the ringing in my ears!!!!!!! Oooooooh! I am surprisingly not in pain. I just CANNOT get comfortable. Oh, did I mention I have IC? (Interstitial cystitis.....bladder disease under control presently). Uuuuuuugh, sorry......I'm sooooo overwhelmed.

So, I think I could possibly have Multiple System Atrophy....is ANYONE on here familiar with MSA????

about MSA, I just wanted to tell you that I hope the MRI tells you something that you can take to the bank. Some of your symptoms are familiar but others not so much. I had to take Ambien to sleep for a couple of years and my ears are still going off like two teakettles. Sleep may have to be induced, your Dr. should help you just be sure he knows that you are up all night. I am glad you don't have ppain but you do need sleep to get better. Good Luck, Ken in Texas. P.S. Try not to worry about things that have not yet happened.

[KateKline]

Thanks, Ken. I have taken Lunesta for almost a year. I only get 3 hours sleep at a time. My health is severely compromised right now. I can never fall asleep. It's horrifying. I've lost 50 lbs no one seems to care.

[zkrp01]

Originally Posted by KateKline

Thanks, Ken. I have taken Lunesta for almost a year. I only get 3 hours sleep at a time. My health is severely compromised right now. I can never fall asleep. It's horrifying. I've lost 50 lbs no one seems to care.

It's a Texas thing where I say "Thats nothing, I lost 60 lbs". Mine was muscle wasting and I'm glad it was not digestive stuff. Three hours needs to get to 5hrs of sleep. I do not know the effectiveness of Lunesta but I know that it is OTC and the Ambien has to be RX'd. So if you need more sleep, get your Dr. involved. I have been trying to get off Ambien and it's not easy but I remember how much better I felt after getting 5 hrs sleep. I would do it again. I am taking it for granted that you are eating for nutrition and giving your body what it needs for repair. Realizing that symptoms are going to come and go will help lower the stress level. Avoid situations that build anger and or anxiety. The mental portion is hard for me as I never have been around people who ever sat crosslegged on the floor 25 or 6 to four. (Chicago just popped in there). The closest I have gotten is deep breathing that is slow with good air coming in and all manner of noxious fumes and poisons being being exhaled along with stresses that are currently plaquing you. You are one year in and I am two years in. I feel that improvement is coming for you as I was going downhill for around a year and things started turning around. Good Luck, Ken in Texas.

[pinkynose]

I tried Lunesta and it did not work well for me. When i was on Ambien I got a good 6 hours of sleep. When I'm flaring or traveling I sometimes still give in to escape and be able to sleep. For me it wasn't too difficult physically getting off it. However, psychologically it was difficult. It is not meant for long term use and like all drugs has potential side effects. I am not trying to push the drug, just thought I'd weigh in since I have had experience with both.

Ken in Texas: I'm starting to think we have a similar Music Library.....

[KateKline]

Thanks, Ken.
I had a brain MRI on Monday and haven't heard a thing. Levadopa is making me feel worse....lots of nausea and dizziness. Can't stop tremoring. I'm supper discouraged today. Life is so Scary right now. I can't eat, sleep, walk, smell, eating is a nightmare. My gut has so much pressure in it. I've had to go get hemmorhoids banded. Talk about pain! I'm only 55 and was fairly attractive before all this started up...... Not that that matters but in just one year I've aged about TEN. I can't DO anything. It's mind blowing. I'm lying in bed nauseous.

[zkrp01]

Originally Posted by pinkynose

I tried Lunesta and it did not work well for me. When i was on Ambien I got a good 6 hours of sleep. When I'm flaring or traveling I sometimes still give in to escape and be able to sleep. For me it wasn't too difficult physically getting off it. However, psychologically it was difficult. It is not meant for long term use and like all drugs has potential side effects. I am not trying to push the drug, just thought I'd weigh in since I have had experience with both.

Ken in Texas: I'm starting to think we have a similar Music Library.....

I am still haveing trouble, I may have to get a stash just for psycological reinforcement. Started out listening to Buffalo Sprinfield back in the day and took the whole ride with the Beatles. To steal a quote, "I've got one ship left and music is her name". Crosby Still & Nash. Good Luck, Ken in Texas.

[zkrp01]

Originally Posted by KateKline

Thanks, Ken.
I had a brain MRI on Monday and haven't heard a thing. Levadopa is making me feel worse....lots of nausea and dizziness. Can't stop tremoring. I'm supper discouraged today. Life is so Scary right now. I can't eat, sleep, walk, smell, eating is a nightmare. My gut has so much pressure in it. I've had to go get hemmorhoids banded. Talk about pain! I'm only 55 and was fairly attractive before all this started up...... Not that that matters but in just one year I've aged about TEN. I can't DO anything. It's mind blowing. I'm lying in bed nauseous.

Many have to employ Endocrinologists and Internists plus Chiropractors and just about everyone that has a sheepskin. You are going to prioritize your symptoms according to what is the worst. I am just saying don't hold back on the help you seek. Looking back over my journey, getting good sleep gave me more bang for the buck. Secondly for me it was pain but in your instance it sounds like there is more that an Endo could look at. Maybe your gut is full of the wrong Bacteria. Use the search here and there is TONS of stories about digestive disorders in conjunction with PN. For many there has been times when getting by day to day was too much of a stretch. They had to cut it down to hour by hour. Your symptoms will change so seek help and hang on. Good Luck, Ken in Texas.