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Debsten

Diagnosed at 40 very scared

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hi,

 I’m a 40-year-old female just diagnosed. I’ve had symptoms down my left side with problems with hand control, tingling in fingers   and rigidity in my back and no arm swing, slowness.   Got rear ended in June and herniated 2 discs in neck, was in cervical collar for a week. 

Did nerve study after accident and told I had Ulnar Neuropathy in left arm, cervical radiculopathy and carpal tunnel in right. After months of therapy wasn’t improving was having trouble nodding head and very ridgid in back and tingling in neck down arms. In October Neurologist prescribed Sinemet.  It really helped but sent me mentally on a downward spiral thinking I had PD. I weaned off it and he referred me to MDS. Symptoms got worse probably from anxiety and depression which I’ve never had before. Spent my time researching trying to prove it wasn’t PD. This of course bought on more anxiety and depression and I lost a lot of weight.  

 

Last week had had appointment with MDS, he said he was 70% sure it was PD and would be over 90% if meds helped (which I knew they would after already trying them). He said I could do dat scan but had to wait a month for approval or I could start meds and do one later if I wanted.  At that point I chose the meds because I needed some relief and new they would help, I couldn’t take the feeling of not being able to shake or nod my head and I had gone from positive and happy to not finding any joy. 

I have been on Rytary 95 for a week, and it helps physically but mentally I am worse.  To the point that I don’t want to wake up in the morning.  I was prescribed Zoloft which I haven’t taken but think I will need to.  I have no reason to feel this way, have 2 kids, supportive family and friends.  I am so scared, more for my mental health than the PD.  

 

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Welcome, Debsten. You are feeling the same emotions I experienced after my diagnosis in late 2010. Please give yourself permission to feel and express whatever you're feeling. Ask your MDS for a referral to a psychologist or Clinical Social Worker that is knowledgeable about YOPD. I've been seeing the same Rehab Psychological since eight months after being diagnosed. She has been a tremendous help to me, especially in the first year as I adjusted to my new normal. Depression and anxiety are normal after such life-altering news. Take the antidepressant. You probably won't need it forever. Sending you a big hug!

Dianne 

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Hi -- I sent you a personal message. I kept a journal in the beginning- it helped. It is a process. You will be ok.  Exercise- it helps PD & anxiety!!! 

 

LAD

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Normaly I would say your doctor knows best

but I think its a bit unusual to start someone on rytary

is your md a movement disorder specialist

please keep posting

S

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Normaly I would say your doctor knows best

but I think its a bit unusual to start someone on rytary

is your md a movement disorder specialist

please keep posting

S

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He also put me on celexa & Xanax at night so I can sleep.  Mentally I am really struggling 😢. I’m usually a positive person so this is really scaring me that I can’t control my emotions. 

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55 minutes ago, Debsten said:

He also put me on celexa & Xanax at night so I can sleep.  Mentally I am really struggling 😢. I’m usually a positive person so this is really scaring me that I can’t control my emotions. 

I kept a journal and saw a psychologist. It helped to vent to someone other than my family and friends. You will be ok...three years ago, I was where you are now. It's s process but you will get there. 

LAD

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Since you were diagnosed at a young age, your decease will,progress slowly if it is in fact PD. Remember to exercise regularly, keep stress under control. Ashwaghnda and shankhpushpi are also good herbal brain tonics to keep use every few months interchangeably. You can also try mucuna, which is natural dopamine. Some substitute it for Sinemet 

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16 hours ago, Debsten said:

He also put me on celexa & Xanax at night so I can sleep.  Mentally I am really struggling 😢. I’m usually a positive person so this is really scaring me that I can’t control my emotions. 

Give those drugs a bit of time to work. I take Celexa and Clonazepam.  As I remember it took over a month for both to take full effect.

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 Thank you so much for all the replies  and information! Taking it day by day and trying to stay positive. I’ve got  lots to be thankful for so trying to keep that mindset.  If anyone has any recommendations for an MDS in the Northern California area please let me know. I believe mine is very good and knowledgeable, but I would like one more focused on natural as much as possible. 

 

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Hello Debsten,

One of the things I did and still do when I was diagnosed at 35 years old is to celebrate everything. The more we celebrate our every accomplishment the more dopamine our brains will produce. I celebrate  getting out of the chair on the first time. I celebrate being able to drive, go to work, not having something terminal, and so on. This sounds cheesy but it does help putting you in a more positive mind set.

This disease responds well to positivity and a can do attitude. Of all the people I have met and talked to, it was the ones that were positive and tried hard to stay there that do better.

Exercise is also the only natural way I have seen to help this disease. I come from a back ground of treating all my ailments with naturopathic and home remedies first. With Parkinson's I have found only exercise to provide positive results for short and long term. Most MDS's you find will tell you if you feel better using said natural treatment then do it. I have and still continue with diet changes, supplements and acupuncture.

Unfortunately there is little to no scientific data for natural remedies that doctors can access to say this works better than this treatment. I went from taking the occasional advil before diagnosis to taking 330 pills a month now. It is unfortunate but after 8 months of trying to fight my stiffness, tremors, and slowness of movement I could find nothing to relieve my symptoms that wasn't prescribed. Exercise helped but it did not last long enough to cover daily symptoms. Once I started with Cardopa/levodopa and azilect I found the dark cloud of doom that I had no idea was following me, had disappeared. I feel so much better now and I am still using all of the natural treatments as before.

I found that once I could ease the symptoms and accept what was happing to me, my life got so much better. I can honestly say I was very happy prior to diagnosis and I am even happier now 3 years later. It is hard to explain but going through the process of getting diagnosed to acceptance changes your priorities and life goals, then you look back and realize, life is good, and in the reality of it all I could have it a lot worse.

It is tough. Trust me we have all been where you are. It is ok to get angry, it is ok to cry, it is ok to scream. Just remind yourself of all that you have and still have. Soon that bright light from the future you thought you lost will start to shine again. I promise it gets better.

Blessings

Feel free to ask any question you might have.

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I am still battling the anxiety/depression, is somewhat better. I’m Taking 1 sinemet 3 times a day, Celexa (started 12/14 with 20mg, upped to 40mg on 12/21) and 100mg Gabapentin with the sinemet 3 times a day (7, 12 & 5) I feel like I have accepted the diagnosis but my mind has been taken over by the anxiety.  I can be all good one minute and then, boom, is like a light switch is flicked and I have a knot in my stomach and feel like I’ve been plugged into an electrical socket.  I have no desire to do the things I usually love.  It is really crazy to me that logically I can work through it my the feelings of anxiety are over powering.  I have noticed that the anxiety maybe seems better after I take the sinemet & Gabapentin. It is much worse in the morning.  I don’t sleep great but find if I am awake at night mentally I feel really good, but that goes once I wake up.  Physically I’m pretty good also.  But find I am agitated and my calf muscles twitch/contract when sitting still 

Please tell me this is just the process of getting the meds right?  I’m forcing myself out to do things and exercising every day but I’m so frustrated with the anxiety and lack of interest in things.

 

Thanks

 

Debbie

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You may want to post on the ask the doctor or pharmacist forum.... They should be able to guide you in the right direction...I am only speaking from my experience.  I think celexa or any anti depressants/anxiety takes a few weeks to be effective.

I suffer from anxiety as well. I went to a psychologist for awhile and she taught me breathing techniques that helped. It helped to talk to someone not close to the situation. 

Keep exercising....TAI CHI is relaxing. And Adam is right...exercise gets that dopamine going! 

You have choices...you cannot choose to not have PD but you can choose how to respond to it. It's part of who you are now but it does not define you. Be present in your life....eat ice cream for breakfast! 

 

Stay strong! Stay hopeful! 

 

LAD 

Edited by LAD
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Thank you!  After weeks of trying I finally got into a psychologist this week so hoping that will help.  The hardest thing for me is how it just comes on, and the physical feelings that come with it.  I hate not having any appetite (although I’m eating good), and zest for life even though I physically feel pretty good. 

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Iam not sure if your antidepressants will help much at this point as your depression and anxiety is likely related PD diagnosis. Normally antidepressants are prescribed at later stages of PD. Not during initial diagnosis. Did you get it confirmed by a DAT scan? PD and taking Sinemet at 40 is bit rare. Even if it is PD, at 40, you should be able to continue few years without needing Sinemet with something like requip or Azilect if what you have is indeed Parkinson’s. Anxiety can can mimic many PD symptoms and Sinemet will likely help as it elevates dopamine levels in the body. Did you get your diagnosis when you were already anxious about PD? If so, I would get a second opinion after your anxiety subsides. You can’t make a good PD diagnosis when anxiety is mimicking PD symptoms. Can you function normally without needing Sinemet when you are completely free of anxiety and depression? A long vacation to another country might help you to get over the anxiety cycle and relax. Then only you can make a proper judgment about yourself when you are not worrying about yourself. You can work with your doctor to wean off all meds and go med free for about month or two.

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I did not get confirmed from DatScan, I am awaiting approval from insurance.  Just saw MDS today and he says I am responding to Sinemet so there is no reason for me to go off it.  I asked about the mucana purines and he said that it was not a good idea.  Yes I did get diagnosis when already anxious, for 8 months I had been basically thinking about every move/feeling in my body and after my car accident my neck got a lot worse so was even more conscious of everything not knowing what was going on.  When I got all the neuropathy diagnosis I was relieved but PT wasn’t helping much, which is what lead back to PD.

I don’t know if I could function without the sinemet if I got rid of the anxiety, I do know I could before my accident, it was the neck stiffness that made it unbearable.  My top priority is to get over the mental aspect and go from there and also get a second opinion.  

I am from Australia, so that OS idea does sound good, especially since my family has been here during all this and leave next month which makes my anxiety spike.  But I have 2 kids to take care of and my husband is a pilot so is gone a couple nights a week. 

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Keep a journal.... I did that and brought it with me when I saw the psychologist. It helped her see where I was coming from at different times. 

It's a process and you will get there. Find something you love to do .., dance with your kids.,., it's good for you and them! 

33762744930_39c42abf04_z.jpg

you are a mom.... kick PD's butt...

 

LAD

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8 hours ago, waruna01 said:

Do you still have a strong smell? Can smell a fresh banana, soap,  cofee from a distance? If so, I highly suspect your PD diagnosis at 40. Your doctor probably shouldn’t have started you off with Sinemet right away in my opinion at 40, of course I am not doc. Just my opinion. My dad spent several years with just requip before starting Sinemet when he was close to 60. Anyway, I am sure everyone will respond positively to Sinemet in some fashion even if they don’t have Parkinson’s since Sinemet elevates dopamine.  Some PD patients do indeed Mucuna  take as per Dr Okun. You will get lot of entries about Mucuna if you search this forum. If you are from Australia , I highly recommend you spend several months at least 3 if possible in this case, without taking any Parkinson’s meds after consulting your doc. This might sound a long time but it takes several months for your body to adjust for different environment. Then only your body can truly tell you if something is wrong with your body. Living away from your native country is hard your body as it alters your sleeping patterns, body rhythms, takes you away from your loved ones, takes you outside your comfort zones which can lead to heighten anxiety levels, depression etc etc which can all mimic Parkinson’s wich your MD unlikely factored into his or her diagnosis. You should ideally spend time in your native country from time to time recapture your normal body rhythms. Reason I am tell you this I believed I had Parkinson’s at 30 like my dad for almost a year and had every classic Parkinson’s symptom you can think of including tremors, rigidly, loss of arm swing, depression, anxiety and constipation. It all went away when I spent 4 months with my family who lives out of country last year. I am back to normal now. Don’t rush into Parkinson’s diagnosis. There is absolutely no benefit in getting an early Parkinson’s diagnosis. 

 

 

Edited by waruna01
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I still have full sense of smell and have never had constipation. My main symptoms were rigidly, loss arm swing, hand control, decreased blink, some slowness and sometimes speech slurred.  I guess the DATScan will be the final confirmation.  I also have a 18mm pineal cyst but doctors don’t think that is contributing to anything. I have been living out of AUSTRALIA for 18 years with no problems until now.  I go back a lot and my family is here a lot.  I have to conquer this anxiety and then go from there.  Hopefully I can get Datscan soon. 

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33 minutes ago, Debsten said:

I still have full sense of smell and have never had constipation. My main symptoms were rigidly, loss arm swing, hand control, decreased blink, some slowness and sometimes speech slurred.  I guess the DATScan will be the final confirmation.  I also have a 18mm pineal cyst but doctors don’t think that is contributing to anything. I have been living out of AUSTRALIA for 18 years with no problems until now.  I go back a lot and my family is here a lot.  I have to conquer this anxiety and then go from there.  Hopefully I can get Datscan soon. 

If I were you, I probably wouldn’t have even worried about Parkinson’s until my smell was significantly diminished. There is no point in a forced Parkinson’s diagnosis. It’s only going to make things worse. It will affect your health and life insurance and family life decisions. More years you can go without an official diagnosis is better in my opinion . Unless of course your symptoms are crushing in which case you may need meds but then you probably won’t need a dat scan in the first place to tell if you have Parkinson’s. When Parkinson’s is being judged by a DAT scan, I highly believe Parkinson’s diagnosis is premature. Given you are still very young, have not lost your smell or have constipation which are classic very early Parkinson’s symptoms that takes place years before Parkinson’s symptoms appear , I probably would have waited few more years before jumping into conclusions. Your anxiety will significantly go down when you take some time off and spend some time with your family is Australia 

Edited by waruna01

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I didn’t jump to the PD diagnosis, when I was so stiff and arms were not getting better and other symptoms my neurologist referred me to a MDS. He seems pretty sure but is doing the DATscan per my request.  I would love it to prove otherwise, but don’t want to have false hope.   I didn’t realize loss of smell and constipation were a definite symptom?  I would love to go to AUSTRALIA but can’t just drop everything unfortunately.  

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Hi Debsten, 

Sorry to hear that you are going through this stressful time...I know it isn't easy!! I just wanted to "weigh in" since our stories have some similarities. I had subtle symptoms for almost two years...starting with not being able to hold something for a long time with my left hand before it would begin to shake. I was diagnosed with PD in October 2017 (at age 47...I'm now 48), with DaTScan results confirming a "decreased tracer uptake" in the right side of my brain. They ordered the DaTScan because my symptoms were clinically mild, and some of them were not typical...like hyperreflexia, and my MRI did show some "non-specific changes to the white matter of my brain" - which they think may have been related to my previous Lyme diagnosis. In fact, they were first leaning towards MS. I still have my sense of smell and do not have issues with constipation - although I do experience some stomach bloating, but I think it may be related to the Pramipexole that I'm on. I have read reputable research that suggests women tend to have fewer issues with loss of smell, as well as people with some types of genetic PD. (My maternal grandmother and paternal grandfather both had PD.) My initial symptoms were very similar to yours: left hand not cooperating when typing, etc, left arm-swing reduced, left foot dragging a bit, tightness in left thigh (especially at night), occasional pain in back and joints (mainly hips and shoulders), and what I would describe as an action tremor. As of late, my joints have started to click and pop a lot after I tried to increase my exercise intensity; so with my doctor's okay, I'm titrating off of the Pramipexole (since I'm thinking it MAY be the cause of internal swelling as it's considered one of the possible side effects) and titrating up on the Carbidopa/Levodopa. I've also considered Mucuna Pruriens...my neuro hadn't heard of it. But as Waruna said, it's been recommended by Dr. Okun in this forum. I think it's just a bit tricky getting the right amount. My DH bought a drug scale and some empty capsules to weigh and fill. But, I haven't tried it yet! ;)   

I'm hoping and praying for your sake that the DaTScan is negative...but, I wanted to share my experience with you. 

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It went away. I convinced myself I wouldn’t worry about Parkinson’s until I have my smell. If you go shopping for a Parkinson’s diagnosis, eventually one doctor will diagnose you with PD. Parkinson’s diagnosis is still not cut and dry like a HIV test. There is no right or wrong diagnosis at first. Parkinson’s diagnosis only becomes accurate as years go by. That is why most MDs don’t start you off with Sinemet right away. They usually prescribe Azilect or requip before prescribing Sinemet as others mentioned here. You got plenty of time to prove your self otherwise as you only get diagnosed once in your life. Wouldnt you rather diagnosed with Parkinson’s at 50 rather than 40? There is no harm proving yourself otherwise if you can still function properly without meds. You can always use Mucuna if you don’t have Sinemet. If what you have is indeed Parkinson’s, it will slowly surface as years go by and will likely need Sinemet as it is more potent than Mucuna and contains carbidopa that helps deliver dopamine directly to brain instantly . Mucuna doesn’t have that. It needs to go through normal food channels into the brain. Its natural so It’s much slower. You need higher doses to get same effect. 

Edited by waruna01

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