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Acceptance of PD diagnosis...a new path


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#1 New normal

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Posted 07 March 2014 - 02:09 PM

Hi folks. I have bn "lurking" for some time. I've learned there are intelligent courageous people here who give of their precious time to help others. I feel safe among you. I am a 66 yr old woman, married 44 yrs, 5 children, 17 grandchildren and am grateful for having lived a very full life. My DH & I enjoy kayaking, motorcycling, and partnering in projects and adventure.

I have had numerous neuro symptoms for 4 years becoming most noticable after having a parathyroidectomy abt 5 yrs ago. I have had many tests, exams, and diagnoses. Six mos ago, I was diagnosed w/PD by a MDS in Phoenix. I am classic for clinical symptoms, but my DaT scan & MRI are normal. The "golden standard test" of L dopa sub lingual tablet stopped my tremors in 10 minutes....significant full right side tremors, halting speech, dragging right leg, poor balance, word search, foggy thinking..."poof" ...gone....10 minutes.

I started l Dopa/ cardopa 200/50 and am up to 4x per 24hr. Symptoms are controlled with break through at around 5 hours. Generally, I walk 1-2 hours per day.

Questions:
1. Can I now quit doubting the dx and begin my new journey? I hv bn diagnosed w/MS, fibromyalgia, stress/depression, and many other things in the past. My kids have a hard time accepting this dx based only on the "gold standard" L dopa test. They are very concerned that I am taking a drug that can potentially cause Injury, and they want me to continue seeking differential diagnoses and more objective tests. AND, the drug only lasts for a certain amt of time. They say they wd rather see me tremor than for me to use drugs that reduce my life span or alter my personality.
(We are all a bit pharmaceuticals-phobic)

2. Pain: Clinical based internet PD sites seldom speak specifically abt pain....just that it happens w/PD. After just a few days of perusing this site, I get the feeling that PWP have the unique pain I am experiencing. I can ignore the tremors..but the pain...which comes from all sides in all forms at all times in every location of my body...totally unnerves me. (Pardon the pun.) I cannot explain the pain to anyone...In short, I have called it "chaos beneath the skin." The parathesia while seemingly mild...little tingling, numbing, then prickly, then WHAM I have to move the body part! The "charley horse" in my leg that mildly annoys me suddenly grabs my calf and twists it til I reposition, only to resume on the other side of my body while a tingly pins and needles will explode in my shoulder and arm. How can anyone relate unless they experience it...the unpredictable range of sensations "exploding" in all four limbs and torso almost to a rhythm of some grunge band from Seattle. I ask you folks, is that PD pain?

3. Travel: Cars, trains, planes...the vibration and road bumps drive me.....it seems to overstimulate all parathesia. Exhausts me. Is this PD ?

While I hv many more questions, I will stop out of consideration to you poor folks...this is not meant to be a "bummer" post. I am seeking info from those who know....PWP's. When I hv asked medical professionals specifics, the answer that PD is a designer disease pecululiar to each individual. I get that. But it would help me accept my bizarre condition, if I knew others have similar sensations. Then, I can diminish my worry that this is "mental", and I "really must get a grip on all the stress I have."

For each of you PD can control your every minute..waking and not...I get that, also. I am impressed that you take the time away from your own challenges to help a "newbie" join your path. I am ready for this now....I am setting my sail for the waters ahead. I am not intent on the destination so much as I am preparing for the process....my goal is to continue the path with my loved ones so as not to harm my relationships nor damage my legacy.

I have come to the most credible source for information....you.

Thanks for yr patience in such a long post....
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan, normal MRI. Dx'd w/l dopa challenge by MDS
Symptoms: break thru tremors rt side, rt leg drag when fatigued, balance, cognitive/ speech issues, apathy

#2 TNdad

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Posted 07 March 2014 - 02:42 PM

Welcome.  You've definitely found the right place.  I'm new here myself, so can't offer alot of experenced advice.  I can relate to your description of dystonias and the relief of tremors with sinemet.  I've found in the short time I've been on here that this is definitely not a one size fits all disease. 

I've also found some fantastic people on this site who are willing to take the time to answer even the most mundane questions at any hour of the day or night.  Nights especially since none of us seem to sleep very much.  I personally feel much better with the sinemet so far and actually have lots of periods now when I forget I have this monkey on my back.  I wish you all the best.  :razz:



#3 lu states

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Posted 07 March 2014 - 03:42 PM

sorry you are here, but welcome.     you mention fibromyalgia, which i have had for years.   that brings about the " all over " pain, and for me, bouts of very specific pain in certain areas, which i never know if it is PD, fibromyalgia, or something else.   one of the things that bothers me about this disease is never knowing what is actually what.  is my back killing me today because of PD, or because i used it oddly the day before ?   your description of the nerves beneath the skin, reminds me of the horrid RLS i have had forever, which i finally got relief from with mirapex.  it was a godsend.  i could never, ever describe the feelings of the pain either.   i could feel it coming, say in my shoulder and arm, and then soon i would be forced to zoom my arm up in the air, twist it, then back down, only to have it lurking all over again. my legs have been crazy for years too, with the need to move them spastically completely necessary.  your description and lack of being able to put words to your pain, is what i have suffered with what seems like forever, until the mirapex.   there are people on here who have trouble with the " tiredness " it causes, but for me, anything that stopped that weird gripping, moving pain,was incredible.      i now am on sinemet, and for me, the dr.is still out.   it has relieved my parkinson symptoms immensely, but i have noticed a personality change i do not like, and am waiting to see if that side effect abates, as did the nausea and headache that accompanied the med.in the beginning.    i love the PD symptoms going away, but if i don't end up being myself again, i will stop eventually.    not yet.             i live 2 1/2 hours from my old home town of san francisco, and all my drs. and dentist etc. are there. i have driven in,and had every aspect of my symptoms completely exacerbated.  driving back home is almost a nightmare,where i " dream " of being able to stop and just rest.  i still drive well, but it takes a toll. i don't personally attribute this to the bumpiness, but what do i know ?       good luck,  lu



#4 Rogerstar1

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Posted 07 March 2014 - 04:19 PM

Briefly for now....relief within ten minutes of taking Sinemet indicateS to me something other than straight-up PD.  As does such a complete reversal of symptoms.  Perhaps some psycho-somatic effect?

 

A lady friend of mine with only fibromyalgia (not PD) complains of the vibrations and bumps during driving as being insufferable.

 

BTW - what does the acronym 'DH' stand for?

 

PD pain for me means dystonia.  It comes and stays at a single joint only for months before subsiding and moving to another one.  Involves soft tissues and tendons adjacent to the actual joint to be more precise. 

 

Sinemet, spelled with an upper case "S" because it is a proper noun (brand name) takes 40 minutes to be absorbed and reach the brain even on my empty stomach I've determined.

 

And...welcome.

 

R.


Edited by Rogerstar1, 07 March 2014 - 04:45 PM.


#5 Beau's Mom

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Posted 07 March 2014 - 06:17 PM

Welcome, New normal! I actually wrote an essay for our Senior Center's writers group that is going to be included in an anthology titled "A New Normal" when I had to switch to pureed foods due to swallowing issues!

 

I also take the sub-lingual form of carbidopa/levodopa. Because it is dissolved partially by the blood vessels under the tongue much like nitroglycerin tablets for chest pain are, instead of having to dissolve in stomach acid and move over time into the small intestine where regular carb/levo is absorbed, it can work much more quickly than the non-dissolveable form.

 

I'm not sure what injury your children are concerned that levodopa causes. The main long term side effect is dyskinesia (all those movements Michael J. Fox used to make when he took too much). Most MDS's try to find the ideal balance between relief of painful dystonia (tightened muscles), tremor, rigidity or whatever your PD symptoms are (not every patient has every symptom) and dyskinesia, but it can be a difficult balance. Dyskinesias are uncontrollable movements and I guess you could bang an arm or leg into something and injure it. For me the greatest danger comes from falls caused by lack of balance. Levodopa does not work on the balance issues. That takes PT, balance exercises and movement programs like Tai Chi and Qi Gong.

 

All PD meds over time lose their effectiveness because PD is progressing every day. The medications are for symptom relief and do not cure PD. Exercise, however, does have proven neuroprotective qualities. It sounds like you are doing well in that area.

 

Your best source for accurate information on PD diagnosis and appropriate meds is Dr. Okun on the "Ask the Doctor" forum. If you were to describe your situation to him I'm sure he would gladly give thorough answers that your children could read and understand. I hear your frustration with continuing to look for a diagnosis when you'd prefer a clear path to follow. MS and fibromyalgia aren't particularly cheerful diagnoses, either. Maybe your kids want only to hear that you have a curable illness.

 

Best wishes to you on your journey. We're here if you need us!

 

Dianne


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I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#6 Rogerstar1

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Posted 07 March 2014 - 06:21 PM

Noted - I had not realized what sub-lingual meant.  Thanks.



#7 Gardener

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Posted 07 March 2014 - 06:21 PM

Hi Roger,

 

Thanks for your description of dystonia.  I've had the most difficult time trying to figure out this aspect of PD.  On my affected side I have pain in my hip, shoulder, lower leg, elbow and foot, but not all at once.  Like you, my shoulder might hurt for weeks, then it's my hip, etc.  This pain is more  noticeable when I try to sleep.  Do you find that you have to take more Sinemet than you might otherwise need just to control dystonia?  Thanks.


Gardener, female, 58, diagnosed at 55, 650 mg of Sinemet daily.


#8 New normal

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Posted 08 March 2014 - 01:04 AM

Thank you all for yr insight. It has helped me considerably. As title suggests, I am now accepting the dx, instead of expending my limited energy on trying to disprove it. Also, your comments helped me accept rx that will improve my quality of life. My children will need to process this situation on their own timeline..I think denial remains w/thm. I will see my Neuro/MDS in April. I feel better equipped to discuss my future. Again, my goal is to preserve my relationships.....right now that is all consuming as I battle against irritability, impulse control, fatigue, and "chaos under my skin." You are remarkable people who lend a helping hand to those who are following your footsteps into un chartered waters. God bless you.

Diane: I am a native of WA state, but have bn in AZ the last year. Thank u for yr comments. U r an inspiration to me.
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan, normal MRI. Dx'd w/l dopa challenge by MDS
Symptoms: break thru tremors rt side, rt leg drag when fatigued, balance, cognitive/ speech issues, apathy

#9 christie

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Posted 10 March 2014 - 01:26 PM

Dear new normal, welcome to our forum.

 

My opinion, for whatever it's worth:

 

- PD diagnosis  is made by an experienced neurologist, preferably a movement disorder specialist. I think that instead of wondering whether you should accept any diagnosis or not, you should first confirm that your diagnosis of PD is indeed correct. The only way to do that is to ask your neurologist if he is certain about the diagnosis. Or even ask for a second opinion.  Truth is, that your  negative Datscan (although not excluding 100% the possibility of PD) and-I will have to agree with Roger on this-your almost immediate relief from sinemet (which is also atypical, as, normally,  any form of levodopa takes at least 30 minutes to produce any noticeable effect) may actually  argue AGAINST  a diagnosis of PD (but this can only be determined by your neurologist, as no patient in this forum is a neurologist).  

 

-As regards your treatment with levodopa, you have nothing to be afraid of. Remember that many of us with young onset disease-who were diagnosed in our 40s or 30s-me included-are on levodopa monotherapy, simply because it's the most effective PD drug available and with the most favorable side effect profile. Long-term side effects (such as dyskinesias or wearing-off) are inevitable with long term use of levodopa, but that's the price we must all pay to live our lives as normally as possible. Not to mention that patients with late onset disease (older than  50 years at diagnosis) have a minimal risk of developing dyskinesias as compared to young onset patients.

 

PS: Levodopa is the only PD drug with a proven efficacy in PROLONGING the life span of patients with PD.


-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#10 Rogerstar1

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Posted 10 March 2014 - 02:01 PM

You make it sound as if agreeing with me is painful....smiles to you today BTW  :razz:

 

 

 

 

Dear new normal, welcome to our forum.

 

My opinion, for whatever it's worth:

 

 and-I will have to argee with Roger on this-...



#11 christie

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Posted 10 March 2014 - 03:14 PM

You make it sound as if agreeing with me is painful....smiles to you today BTW  :razz:

 

No, not at all Roger. I was just trying to express my reluctance to jump on any conclusion. Our opinion may further confuse our friend instead of helping her. That said, I guess we must always be sincere, and always say what we think. And that's the only way to help each other.

Smiles to you too, btw...


Edited by christie, 10 March 2014 - 03:15 PM.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#12 New normal

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Posted 11 March 2014 - 12:45 AM

Thank u, Christie for yr response. Let me clarify some things.

At the time of my dx, I experienced significant tremor on right side, halting speech, cognitive issues, balance and gait problems. I was being treated by an esteemed MDS who is an Exec Director of a prominent clinic devoted to movement disorders and specifically, PD. I took a prescription of ...not Sinemet...but a generic 50/200 mg carbidopa/levodopa for several weeks and symptoms resolved. Dr asked me to go three days w/out rx, and return for a full neuro exam.

After the exam, during which he told me I exhibited all the classic signs of PD, he gave me a special tablet of dopamine which he placed under my tongue. My symptoms actually stopped in less than ten minutes, but I laid in a darkened room for nearly one hour. The dr repeated the neuro exam, and recorded the findings. While all symptoms were not eliminated entirely, there was remarkable improvement. He then sd, I had passed "the gold standard" for diagnosing PD, and that I was to resume the generic carbidopa/levodopa.

Therefore, I no longer question the dx..hence the title of acceptance. However, my adult children feel a dx of a serious chronic life changing disease shd hv more clinical objective basis . Especially when they have read the negative things about some of the pharmaceuticals used in PD tx. I now feel it is their problem of acceptance. And I appreciate yr comments, Christie, regarding the positive history of l-dopa.

I asked the medical forum abt some of the things I have learned abt l-dopa. Dr. Okhu (sp) referenced an article he wrote which explained the safe history of the drug. I felt even more comfortable about acceptance, until I then read a comment here in the forum abt the dyskinesia that is inevitable after use of l-dopa. So the roller coaster has plummeted down for one more time...so, l-dopa does not cause early death or toxicity, but DOES it cause dyskinesia ?

I understand that too much info in an under educated mind is dangerous. I get it. However, the opposing viewpoints from respected sources is disconcerting.

I really do appreciate each person who comments...the wealth of pragmatic knowledge is immeasurable...you all are living it...and I respect each response. Thank you very much for sharing.
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan, normal MRI. Dx'd w/l dopa challenge by MDS
Symptoms: break thru tremors rt side, rt leg drag when fatigued, balance, cognitive/ speech issues, apathy

#13 Rogerstar1

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Posted 11 March 2014 - 07:36 AM

For 17 years I took increasing amounts of Sinemet (up to 20 tablets a day the last few years) and never suffered  dyskinesias.  Now, 18 months after DBS surgery and maybe 4 pills a day, still no  dyskinesias.



#14 New normal

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Posted 11 March 2014 - 04:30 PM

Wow, WOW,, Roger, did I need to hear THAT ! ! Even tho my type A personality fully understands that this is a "designer disease" unique to every person, my emotional Type B side is jumping around saying, "YES !!!!" I feel so good on 4 dosages a day...yet, always compounded by apprehension that one day the world stops moving and I have made matters worse.

I am certain my neuro wd b so pleased with this exchange, cuz, Roger, u just me 15 minutes of valuable time in my nxt neuro appt....AND, I got a feeling I am going to be feeling a lot better without the constant tremors and the down cycling I hv bn recently experiencing,

Thank u, Roger, and others... I am moving on...step by step....:).
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan, normal MRI. Dx'd w/l dopa challenge by MDS
Symptoms: break thru tremors rt side, rt leg drag when fatigued, balance, cognitive/ speech issues, apathy

#15 C!

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Posted 22 May 2014 - 09:49 AM

Hey All!

 

C! here.

DX two yrs ago at 44. Rigid in left side.. trouble typing, walking, drying my hair, most small motor skills are affected ( in left hand only ).

Having success w/ Carbo/Levo, taken 4x/day ( 7am, 11am, 3pm, 7pm)

Can only have one small cup of coffee per day tho.. as the C/L & Caffeine wear off... serious crash!

Up until this past Nov I went to the gym regularly, ate well, stayed active. Since Nov, however, no gym, poor diet, move slower than ever. If I could, I would sleep all day & all night.

Who/What can kick my butt back into gear.. any gear other than sleeper gear!


Cheryl !


#16 Annikin

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Posted 22 May 2014 - 09:56 AM

Hi Cheryl- There are two behavioral studies you may want to take part in  through the MJFF website trial finder- one helps with apathy- you work with a study  project to help get back that kick in your step. The other is a typing cadence study through the web. It may not help your typing but it may help others w/ early diagnosis.  I find staying active and engaged is very important.  I wish I could sleep.



#17 C!

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Posted 22 May 2014 - 09:57 AM

ps: I should add that I also take.....Sertraline: daily & Amitriptyline: nightly ( for depression), calcium w/ Vit D, and an Omega pill


Cheryl !


#18 C!

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Posted 22 May 2014 - 10:03 AM

Thank You Annikin!


Cheryl !


#19 Gardener

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Posted 22 May 2014 - 06:20 PM

Hi Cheryl,

 

I hear you!  I'm struggling with apathy myself.  I was diagnosed three years ago and up until about a year ago I also exercised, eat right, etc.  This was my way of life since I was a child but the past year I can't get motivated to do anything.  Like you, I would be happy to sleep most of the time.  I don't know how to break this cycle.  Any suggestions??  Gardener


Gardener, female, 58, diagnosed at 55, 650 mg of Sinemet daily.


#20 C!

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Posted 23 May 2014 - 08:37 AM

HI Gardener... I have no suggestions yet.. although Annikin, another member, suggested contacting the MJFF website trial finder for Apathy.

 

I've yet to do it...

 

Good luck & I'll keep ya posted...

 

C!


Cheryl !





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