Symptoms Advancing or something else?

[Therese]

My dr. is out until mid Dec. I was dx in July of this year. On my last visit in Oct. she upped my carbidopa-levodopa to 1 1/2 pills 4x/day. I;ve been very faithful in taking them 30 minutes before eating. I have very weak leg muscles even though I'm doing strengthening exercises and walking about 1/4 mile or as much as I can. I've had severe low back pain and hip pain with difficulty standing in place and with walking since 2002. I've gone from a cane, to a walker, to a manual wheelchair and now to a power chair. since my last visit with my PD dr. in Oct. my legs keep giving out on me and I fall, if I bend to pick up anything, my body doesn't stop but rolls right down to the floor. I have no warning sign before my legs give out.....it just happens. My back and hip pain have increased and I just asked my PCP to increase my Vicodin. I am flat out exhausted as well. The increase in the carbidopa-levodopa has given me auditory hallucinations. My tremors have increased and are now on my right side as well. Sometimes my whole body - head to legs shake. I'm just looking for input or something if anyone can. Are my PD symptoms advancing or is this something else. I didn't know who else to ask while my PD dr. is away. Any input is appreciated. Therese

[jazzfan53]

Since the Carbidopa/Levodopa works best on an empty stomach, try taking it one hour before you eat. That may lessen the tremors.

[Therese]

Thank you. I'll try taking it an hour before I eat, rather than just 1/2 hr.

[Moderator_1]

Dear Therese

I feel concerned about your situation. Though you write positively it must still be very difficult and worrying.

Regarding advancing of symptoms, Parkinson's is a slowly progressing disease. It is not clear whether the neurologist thinks all your symptoms are due to Parkinsons. Some of your current problems could be due to medication or could be due to something else. You have recently increase you medication and adjusting drug treatment is always a challenge. Patient information on carbidopa - levadopa includes increased tremor and hallucinations as side effects requiring attention. I would encourage you to seek a medical review. Is it possible for you to get an emergency appointment to see a doctor?

I see you are US based, do you know others in your area with Parkinsons? It is very helpful to know other people in a similar situation. I also wondered if your Neurologist is a movement disorder specialist, which is important, as they specialise in Parkinsons.

Wishing you all the best. Please let us know how you get on.

[Therese]

Thank you for responding. After I posted this I talked with my PCP. I told her that my back and hip pain was a 10+ on a 1-10 scale. I told her about my legs just going out on me causing me to fall. Basically I told her about everything I posted here. I have been diagnosed with osteoarthritis, osteopenia, fibromyalgia and chronic fatigue but as my PCP said none of these would cause my legs to give out on me. I take celebrex, cymbalta, lyrica, soma and vicodin for pain. The vicodin is on an as needed basis, the others are everyday. I have no side effects from any of these and most times don't feel like they do anything. I've had this pain with difficulty standing up for any length of time without having to bend over and grab onto something to keep from falling and difficulty walking without tremendous pain since 2002. In 2007 I became permanently disabled. MRI's didn't show anything significant that would be causing such pain or the difficulty standing up and walking. In July of this year I started having tremors on the left side, muscle weakness on the left side which by the way is my dominant side. My PCP sent me to my neurologist - who is a PD & Movement Disorder specialist. She did a neuro exam and told me I have PD. I had a brain MRI which showed bilateral basal ganglia calcifications and front cerebula calcifications. I was told and had heard that PD is slow progressing. I went to PT and have kept up with the exercises at home. I've been on the increased carbidopa-levodopa since October without any seemingly side effects except every now and then having an auditory hallucination. My PCP has ordered another spine MRI to see if there are any significant changes. My bone density is this Friday and she (PCP) wants me to see a Pain Management Specialist. I guess I'm just getting frustrated. Yesterday I made myself some soup for lunch. When I put the spoon in the cup, my hand jerked and the soup spilled. I don't cry much and do try to see the positive in situations, but I just burst into tears and had a good cry, which later helped me to feel better.

I do attend a PD support group that takes place once a month and have found this very helpful. I'm sorry for going on so long in my reply to you but yes I am worried. The PD dx hit me hard. I wasn't expecting this dx at all. Now that I'm having all these falls and now jerky tremors to my left side and shaky tremors on the right side, I too am wondering what's going on. I'm wondering if I've had the beginnings of PD in 2002 and its just been progressing since then. My PCP wants the MRI done first before she sees me. I just want answers. I need to have answers as to what's going on with me, what I can expect, what I can do to better help myself. Does PD go into remission - like maybe have a fast progression for a time and then a regression or remission? I don't know.

But I want to thank you for replying....just to hear something helps with the anxiety I feel. Therese

[Moderator_1]

Therese

Thankyou for your reply. You are one amazing woman.

You ask if PD goes into remission - I am not a medic so this is not to replace medical opinion but a fellow PwP response. From observation I notice it advances at varying degrees for each individual. From personal experience i notice that I can be on the same medication for months then may suddenly need to increase and adjust.

Parkinsons does not go into remission in the way we talk of cancer or Multiple Sclerosis remission.

Anxiety goes with the PD territory doesn't it and you have more than your share of stressors. I hope you find support and comfort here and elsewhere.

[Therese]

I do find support and comfort here. I had tried another PD group for about 2 weeks and well, some people there wrote sarcastic replies. I didn't need that. So I'm very happy I have found this site because I don't see that anywhere between anyone here. I now have a 'laundry list' to go over with my PD dr. when she returns. In the meantime, my PCP has orderded a spine MRI and is referring me to a pain management dr. She believes my back and hip issues are separate from my PD but she follows that with I could be wrong, let's see what the MRI shows. It's so easy to get frustrated and I am usually very patient and soft spoken. I don't like conflict but I find myself sometimes feeling like my back's against the wall. I was seeing a therapist for depression from being told I have this disease but she told me it was treatable with medication because it's not a 'true' depression but part of the disease. She didn't think we needed anymore appointments so that was that. I do go to a Support group here and I enjoy it very much. But it only meets once a month.....this month on the 5th - so I'm taking my laundry list with me and if I get a chance, I'm asking my questions.

You've been very kind in your responses to me and I thank you for that.