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Unread 02-18-2013, 01:38 PM   #11
reverett123
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...and think. You mentioned a hiking trip last year and my impression was that life went to hell shortly after that. Where did you go? You also mentioned that you live in a converted garage. Was that a recent move?

What I am wondering about are environmental toxins - organophosphates in particular. Don't discount the possibility just because you were out in nature. Managed forestland can hide some nasty surprises. And that garage may have had some termite damage that someone "took care of".

Good luck. - Rick
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Unread 02-18-2013, 05:11 PM   #12
Brain patch
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Israel,
My dad is suffering from Parkinson's with dementia also. He had a lot of dizziness but the neurologist was able to get that under control by trying different medications for low blood pressure. I hope your doctor can help get your dizziness under control also.

just wanted to tell you that I have you in my thoughts and prayers. I am so sorry that you are suffering. Much love to you.
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Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg.
Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.)
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Unread 02-18-2013, 05:39 PM   #13
Israel
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Rick,

Last summer I was bitten three different times by tics. I think it may have been two? months after the last bite that I started feeling badly.

We don't have termites here, but the garage was treated for carpenter ants. This hadn't occurred to me until you mentioned it. That was two summers ago. Would it take that long?

I saw a urologist today regarding possible hernia(s) and pain in the testicles. No hernia, but the doc thinks there might be some nerve damage. My Lord, how does that happen? Now, tests for that.

Thanks to the other members who have responded to my thread. I am considering suggestions. I didn't believe that anybody would respond, how wrong I was. You are great.

I am not feeling well physically or mentally today, which is fairly normal. But, I DO have some better days. Thank God. I just am unable to make decisions for myself. Definitely need help there.

Counsel on ageing is suppose to be looking into some help for me. I joke about the city coming to my pad and condemning it for health reasons. Not really that bad, but not good. Hopefully they will help me regarding exercising, getting me motivated. I am looking forward for warmer weather so I can get out and be in fresh air and sun. Thanks for listening.

Contratiction, above. Can't remember things, but able to get my point across in writing.

Israel
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Unread 02-18-2013, 06:40 PM   #14
Israel
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Thanks. I keep saying if I didn't have this dizziness, I would be able to cope more easily with my symptoms. Thanks for the prayers.
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Unread 02-20-2013, 02:15 AM   #15
lindylanka
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I too would advise you to take Muireann's advice and get tested for B12deficiency/Pernicious Anaemia. It can disguise itself as several neurological disorders, and it can co-exist with them too. Treatment with B12 shots if they are close enough together should give some improvement if that is your main problem. Either way it often gets missed, is very inexpensive to treat, and if you get negative results for the testing then that is something off your tick list. On the other hand if you come back positive then with the right treatment you could have some major improvement. If testing for this turns up nothing, then Bob Dawsons advice is good, take the initiative and get a second opinion

You are welcome here, ask away, and someone will be along soonish to answer, and there are some really knowledgeable people here who are happy to help.
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Unread 02-20-2013, 06:38 AM   #16
Israel
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Lindilanka,

Thanks for the info. No harm done by getting the tests. That is something that I will definitely follow through with. I see my FNP on another matter, next week. I will ask her do get that done. I appreciate all the advse I get. Israel
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Unread 02-20-2013, 09:35 PM   #17
ol'cs
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Default Israel....

You are definitely not a simple case of PD. The way you describe your situation, like Bob commented you are advancing at a rate which is at the beginning of the "bell curve" of " rate of disease progression. You describe your symptoms, as if you have "multisystem atrophy". I can feel your anxiety, apprehensions and the uncertainties which you have been burdened with.
All I can say is its not over 'till its over, and to let you know for what it's worth that you are not alone, there is help. Please don't give up with premature despair. You should try more dopa or addition of an agonist or something to twist the anti-PD cocktail of useful available medications. I don't think you are properly medicated, maybe depressed? You wouldn't be the first, depression visits most of us when we first realize how totally flunked up we really are.
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Unread 02-21-2013, 02:57 AM   #18
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Israel,

I would still say to rule out b12 deficiency before taking any more drugs. To do this properly you need serum b12 test, methylmalonic acid test, homocysteine test. If there is the slightest suspicion of b12 deficit you need aggressive treatment for it. I was falling when I initially presented with pd symptoms. The first neuro thought I had pd plus, meaning possible multi system atrophy or progressive supranuclear palsy. These diseases are more rapid onset than pd and don't respond well to l-dopa anyhow. I had, in fact, an under treated b12 deficiency.

The b12 was half treated, I improved, then b12 treatment stopped, I disimproved. Pd was confirmed by two datscans and this led the docs away from a focus on b12 that might have cured me. And if anyone takes a lot of l dopa, it can precipitate a b12 def too. Please also read the current b12 thread that Conductor started.
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Unread 02-21-2013, 05:09 AM   #19
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Default If you can afford an MRI and MRA ....

Such a sudden onset and rapid progression of symptoms would justify an MRI and an MRA. These two tests could reveal several possibilities. According to most of the literature, an early PD dx is wrong about 25% of the time....

I am sure that all those who post here wish you well.
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Unread 02-21-2013, 06:41 AM   #20
Israel
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I don't doubt that I am depressed. When I have a really bad day, like yesterday, it's tough, anger depressed. Today, so far, I am not feeling to badly. Of course, I have been up for a short time.
I am keeping a five-day diary regarding how I feel and what's happenng after I take my L/C med time 4 per day. I agree that the mixture isn't there yet.
On Monday I will email it to my Neurologist. I have a strong feeling something will happen regarding more meds.
I had hoped that I would be feelng better by now, but that's my not denial, I suppose.
I appreciate your posts.
Israel
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