Appointment with neurologist - Parkinson's Movement

Parkinson's Movement
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Appointment with neurologist

UMass67
UMass67
46 Replies

I was diagnosed with Parkinson’s disease in November. I’ve been reading and following this blog regularly. It’s so helpful! I believe my symptoms are very mild at this point and I take two Sinemet and one 250g magnesium tablet a day. I have a follow up appointment with the neurologist in April, and I’d like some advice on how to best use that time. I feel like appointments with my family doctor are more for keeping a history of symptoms. I know how valuable these appointments with a neurologist are, so any advice would be welcome. Thanks for sharing, everyone ❤️

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RoyProp

Require neurologist to follow the disease with regular Pull Test and Updrs Tests. For inspiration please see my HU profile.

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UMass67

Thanks-I guess I’d better read up on what those are!

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Hidden
Hidden

UMass67,

Since you are relatively newly diagnosed and with fairly minor symptoms, I think it is worth mentioning high dose thiamine HDT/ Vitamin B-1 / Thiamine HCI as a possible consideration at this point. There are many reason's to consider it, but first and foremost is that it appears to have the potential to halt or very significantly slow disease progression and in people who are newly diagnosed with minimal symptoms, it has shown potential as a stand alone treatment in some PWPs while offering the potential to allow some PWPs to lower their Sinemet/ Rytary/ Levodopa dose. Another benefit that isn't discussed much is that Dr. Costantini, the founder of the HDT protocol, has found that once you add HDT to your levodopa product, you should never need to increase your levodopa dose over years of use and a greatly reduced chance to develop dystonia! Not everyone responds to HDT, but the majority do and if you are a responder to B-1, the upside potential is worth every moment you spend researching it!

Here is a link to a page that should answer most if not all of your HDT questions. If you ever need to find this post again, just click on my round icon and select the post regarding HDT that you would like to read.

healthunlocked.com/parkinso...

Art

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ddmagee1

It's important that you still see your neurologist regularly, in my opinion. Only he/she can assess where you are at neurologically, and dispense medications, accordingly. As an example, I thought I was coming along about the same, and when the neurologist examined me, he found the cogwheel rigidity, and stiffness worse, and had to up my Sinemet dosage. I really had not noticed that much. I have experienced, over a period of 8 years, that PD is insidious in the way it can start to interfere with a person's bodily symptoms. My symptoms started out mildly, and have become gradually worse, over 8 years.

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UMass67
UMass67
in reply to ddmagee1

Thank you-I’d certainly like to keep my Sinemet this low forever. Reading about some people’s side effects is terrifying to me (as are my thoughts about what might lie ahead) It’s likely that I’ll be able to see this neurologist every six months, so I’d like to establish a good working relationship with him. He so stunned me with his diagnosis that I didn’t ask questions when I had the chance. Missed opportunity.

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ddmagee1
ddmagee1
in reply to UMass67

I understand! It's easy to feel terrified. I didn't ask the right questions the first time. I didn't want to hear that diagnosis! It was a shock! Looking back now, though, I have my life back now! The Sinemet has helped relieve my stiffness, rigidity, and tremors, to the point that they aren't real noticeable, most of the time. Before Sinemet, I had resting tremors of left hand and neck, and rigidity and stiffness of all limbs, that was very obvious. I had to use a cane most of the time. So, for me, personally, Sinemet has helped. Although, I agree, I really would prefer to keep it at lower dosages. B-1 helps. Range of motion and walking exercising helps. Also, I follow a Mediterranean diet.

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UMass67
UMass67
in reply to ddmagee1

Thanks so much for all that. Just need to know that life can be mostly normal...

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ddmagee1
ddmagee1
in reply to UMass67

Thank you. That's why I wanted to tell you my story. I wanted you to feel better about this whole initial diagnose phase. Wishing you the best!

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ion_ion

I just had my appt a week ago. I was diagnosed two years ago and initially I saw 5 neurologists in 3 months. Finally I have chosen one of them as 3 of them just wasted my time. The last appt I had with the chosen dr. which happens to be professor at a medical school. Initially it was ok but now he proved to be the same like others.

Last year I told him I have only RH tremor, nothing else. He gave me amandatine which I threw it after reading about side effects.

Two month ago I started C/L , 2x100/25 per day to see if helps with tremor but I did not noticed big change. Last week I told him and he gave me amandatine again and and 3x200/50 c/l a day.

I'm taking 3x100/25 per day now and no way I'll jump to that big dose. Actually I noticed when I'm relaxed the tremor is low no matter I take c/l or not. Before seeing him I saw his assistant who confirmed many patients had good results with B1. But the the doc tried to tell me he does not believe and I should not listen to people on forums.

So practically he wasted my time. He just tried to give me more c/l without being necessary even I told him I'm much better than a year ago.

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UMass67
UMass67
in reply to ion_ion

I’m taking two 100/25 per day plus 250mg of magnesium and my sense of smell is nearly all returned and I can write and type again. I think I’ll share this with him and inquire about thiamine. It seems that everyone is so different. Thanks for your thoughts!

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ion_ion
ion_ion
in reply to UMass67

Thiamine HCL removed all the symptoms except the RH tremor. My main concern was the weakness of body and especially the weakness of the brain (the so called brain fog, anxiety and depression).

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Despe
Despe
in reply to ion_ion

ion_ion,

Congratulations! May I ask what is your weight, how long you have been on HDT and your dose? Thank you.

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ion_ion
ion_ion
in reply to Despe

160 lbs. I started in March last year with 2g/day, 1g around 9 am and 1g around 3pm. I saw very good improvements after four weeks. Now I settled to 1g/day taken at 10 am. Two months ago I started c/l 2x100/25 per day to see if helps with tremor; a week ago I increased to 3xc/l per day. The single symptom left is RH tremor which depends of the stress. HDT partially helped with tremor at 1-1.5g/day but made it worse over 2g/day (I tried 3g/day).

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Despe
Despe
in reply to ion_ion

Thank you! My husband started HDT injections June 2018. He's seen improvements but still he complains with knee aches. He started with HDT 100ml X 2/week. Per Dr. C's instructions he has upped and lowered HDT several times. He has lost a lot of weight (164lbs from 200lbs when first diagnosed in March 2018) since first contacted Dr. C., so he has lowered his dose to 50ml x2/week. I still believe he needs to go lower. However, his pull test is almost perfect (0 to one step backwards). I also believe his biggest problem is depression. He is on no meds, just MP, vitamins and nootropics. We have an appointment with Dr. Mischley in April and another one with a MDS at Vanderbilt University. Anyone there to help???

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LindaP50
LindaP50
in reply to ion_ion

You may want to the Full Spectrum CBD oil (hemp oil) which has been found to reduce and/or eliminate tremors. Also helps with inflammation.

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ion_ion
ion_ion
in reply to LindaP50

I'm still working and driving so not sure CBD oil won't interfere with my activity.

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LindaP50
LindaP50
in reply to ion_ion

Learned CBD oil also helps with arthritis inflammation. I just started trying some. I work and drive and this will not interfere with any of my activities.

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ParlePark
ParlePark
in reply to ion_ion

Dx 2 years ago as well. Just on Amantadine. 2 a day. Tremor predominant LH. Only side effect is some ankle swelling. Tolerable so far. Does help with tremors bout 75-99%. Mucuna on occasion. I also take B1 as well.

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ion_ion
ion_ion
in reply to ParlePark

It is amandatine helping with tremors even when you are stressed?

Thank you.

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ParlePark
ParlePark
in reply to ion_ion

Amantadine does help considerably. It is not 100%. I tremor when I’m not stressed but a heck of a lot less than I used to. When I walk I tend to tremor, sometimes more than others. I try to walk a lot. I tremor sometimes when I work out. Sometimes I don’t. Is it worth it? Right now yes. Sometimes I hardly tremor at all. Depends on the day. If I slept, Temperature , etc. stress is def a factor though. Nothing is consistent so I can’t provide a definitive answer. But so far only side effect and again not consistently is some swelling of ankles. As my neuro said “try it, if side effects bother you, stop”. I like my neuro. She is quite open minded. I trust her. Hope this helps.

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UMass67

A million thanks, Art. I’ll put this at the top of my list of topics!

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Juliegrace

Don't be surprised if your neurologist is dismissive of HDT.

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UMass67
UMass67
in reply to Juliegrace

It amazes to me to see how much research the contributors to this website do on their own. Scary to think about setting out to find options without a doctor’s guidance.

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Juliegrace
Juliegrace
in reply to UMass67

I've seen several neurologists, both as clinicians and through research studies I've participated in. My current one (and my last one who retired from clinical practice to teach) both acknowledged that I knew more about current research and alternative options than they did/do.

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RoyProp

join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600...

Parkinson's Relief, Questions and Answers

Guide:

1. Read page, About, open links.,

2. On Files page, open B1 FAQ document.

3. On Files page, download First Appointment document, answer and submit.

4. read Announcements

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Jumex2017

I feel that appointments with neuros are the same with doctors. They can’t do much except to ask you to do exercises and give you a prescription as there is no cure for pd.

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MerckK

Tai chi, tango dance and yoga are the best physical exercises to stop further enhancement of this disease.

Almond, wall nuts and fruits to be taken regularly to avoid constipation and increase muscle strength.

I am able to stop the enhancement of PD for last two years doing the above.

Be happy and do not give much attention to the disease

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UMass67
UMass67
in reply to MerckK

I love your concluding remark-I need to re-read it on a regular basis 😊

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dianebowe2002

I was diagnosed in Sept 2018. All I take is sinemet 100/25 three times a day. I too am early onset. Neurologist leaves me with info for dance and tai chi. Seems a person with a science background could offer more!! I must look into magnesium,,,

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UMass67

Yes, do try magnesium if you’re plagued with cramping toes. It was magic for me!

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KERRINGTON
KERRINGTON
in reply to UMass67

Yes, 400 mg magnesium theonate a few times weekly, stopped all my cramping.

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4000Nights

PD is like snowflakes... no two cases are exactly the same. But for you newbies (i.e., those just diagnosed), I want to say four things:

1) First of all, the world did not end. If you are past 60, you probably have had it for years and, even without meds, it may be a very slow progressing case. My diagnosis with Parkinson's Disease in September 2013 at age 70 gave my life a new focus and challenge. Finding ways to meet this challenge helped make the last few years some of the best year of my life.

So don’t assume the worse.

2) GP doctors are for the most part clueless. If, you haven’t, get yourself to a neurologist who really knows PD and try whatever they recommend until together you find what works for you.

3) EXERCISE IS BY FAR THE BEST MEDICINE so get up and start walking, use hand weights. HIIT exercise, e.g., shadow boxing is best. Do what you can this week and next week do more. I am in better shape and look better, so I have been told, than I was before I was diagnosed. Don’t lie around with the dogs unless you’ve just taken a run (trot... up paced walk) with them and they’re tired. Bottom line: GET MOVING!

4) Lastly but perhaps most important re your question... you need to understand (and your Doctor needs to too) that there are meds that treat the symptoms and there are others slow progression. Carbidopa-Levodopa three times a day works for me to significantly reduce my symptoms. But I also take Azilect because my neurologist (god bless him) believed there was evidence that it substantially slows progression in some patients. Recent studies have supported that, but it varies by snowflake. It apparently has worked well for me. I have seen blogs where PD’ers have stopped taking it because it didn’t help their symptoms only to find their symptoms got worse. My recommendation if you are recently diagnosed and are early stage is get on Azilect (generic Rasagiline)! It is not terrific at treating symptoms, but it very well may significantly slow your progression.

Perhaps I am just one of the more fortunate PD’ers. I am only stage 1.5 and, more significantly, I have remained there for over four years. I am 74... I still work... I walk everywhere. A few years ago, I ocean kayaked in the Sea of Cortez... something I would not have done at age 72 before I was diagnosed.

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ion_ion
ion_ion
in reply to 4000Nights

My neuro just told me Azilect it is useless. But another one before him said exactly the opposite.

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4000Nights
4000Nights
in reply to ion_ion

As I said, it seems to be working for me. There was a recent double blind test that showed it worked on a percentage of patients, not all.

But which way would you rather be wrong: Take it and it doesn't help or Not take it when it would have helped.

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FMundo
FMundo
in reply to 4000Nights

I too credit sailing and swimming in the Sea of Cortez - a direct result of my being diagnosed with Parkinsons. I sailed there aboard my son's Erickson 38 (9 days non-stop from San Diego). I also sailed to all the Islands in the British West Indies with my sister aboard a catamaran she chartered. On to Tuscany, Rome and a cruise to Barcelona. Now, 5 years since my diagnosis, the family is no longer taking me on adventures before I disappear. I have to contend with going to the Y and Rock Steady Boxing to keep fit. What's a grandfather with PD to do? PD has to be credited with some good. What if I was run over by a bus, or had a heart attack?

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ddmagee1
ddmagee1
in reply to FMundo

Your family still should accommodate you, and include you, as much as they can. They are probably concerned about your safety, especially sailing, with all hands needed on deck to help with rigging etc. I understand. I used to sail with my sister, out of LA, towards Catalina, and elsewhere, and there were times, when one needed to be sure footed, or they'd likely lose their footing, and be swept out to sea. I, too, am a Grandpa, 72, and am sometimes left out, when it comes time to go out on the boat fishing, or just sailing. I have had PD for about 8 years now.

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FMundo
FMundo
in reply to ddmagee1

When we sailed around the Baja Penninsula to Sea of Cortez, I asked to be "not included" on deck at night. Never the less I can recall one night at 2 am being roused to take the helm while some reefing was done. I lack strength these days - not just PD, but old age. Sold my 30' Dufour and got a 17' Boston Whaler just because I'm too tired of fussing around getting underway (with Sailing). I prefer to sit on the porch and watch the sun set, with a Martini . . .

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Rwesol

Ask him/her why they call the "Romberg" a push test instead ofa pull test? ;)

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laglag

Hi. I was diagnosed 15 yrs ago. I try to stay away from stress as much as possible, I retired 5 yrs ago at the age of 56 & I've been doing rocksteadyboxing.org for 12 yrs. It's a non contact boxing program strictly for PwP's. (Persons with Parkinson's). I take Krill oil, Vit D3, Emergen C , & Protandim. Try to stay positive. Do lots of research. Something I just learned from my neurologist, if you're having any kind of bad tremor or dsykensia, there's usually nothing ER can do for PwP's. They usually don't know much about PD medicine so they end up making things worse. So find out from your neurologist what you should do in an emergency. Also make sure your caregiver and your family know what meds your on, the dosages are, what time of day you take them & what they do for your Parkinson's. If you take C\L, you shouldn't eat protein for at least a 1/2 hour and if you eat protein, you should wait an hour before you take your C/L.

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UMass67

I appreciate your thoughts on C/L and protein!

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justhavefun2

I was diagnosed a year ago at age 57 and I can relate to your concerns. This group has been a game changer for me. So, welcome to a most helpful place to learn and fabulous folks who are supportive!

I was depressed and ate my way to about a 60 pound gain this last year...don’t do that!! 😉 I do make a list of questions as they come to mind so when I see the neurologist (or any dr.) my appointments are very productive. My spouse feels like I have been obsessed about PD, but I have been learning how to live my best life in spite of the diagnosis. Now with a year under my belt, I feel confident that my life is not over...neither is yours!

Hang in there and be positive! Sending a hug...good for production of natural dopamine! 🙂

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UMass67

Thanks for your thoughts. I think I’m more inclined to anger than depression. Neither helps much. I haven’t shared this diagnosis with anyone but my husband, who reminds me how lucky I’ve been to have had no health issues, no meds till this at 72. I dread telling my kids, because I know they’ll worry. I’m an optimist at heart, and I think I’ll get past this stage and deal with the cards I’ve been dealt. Hard not to obsess in these early stages. Hugs back to you-anything for that extra dopamine!

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justhavefun2

Just a thought that keeps me from stressing too much...PD is a slow progressing disease. I feel better/have hardly any symptoms compared to last year (I am currently 58 years old). I may die before PD ever gets to the point of being too much in my face. So why be anxious about it? A book I love to read says, “Don’t worry about tomorrow for today has enough troubles of its own.” Hope you are able to let it go and fully enjoy the day! I was reading that you are a walker. Have you looked at John Pepper’s information here on Health Unlocked on that topic? Sounds like he has done a great job fending off PD with his fast walking program. More hugs, more dopamine! 💕

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Kwinholt

I was diagnosed at 49 going on 6 years now. My first neurologist was a specialist in MS bc that’s at first what they thought I had. After several MRIs ect and finally a DAT scan which confirmed it was PD. My neurologist now is a PD specialist and I love him. My original symptom was dystonia which was so scary. I’m an ultra runner and all of a sudden freezing in place and not being able to move was frightening . I was immediately put on cd/ld and was amazing . I am on 6 25/100 a day and Azilect as well. After reading a lot of everyone else’s story I was afraid of how much meds I was taking and I’m a 97lb 5’2 woman. But my dr reminded me of how many miles I run a day and work fulltime and lift weights and most important that he always tells me is that we are all different and never compare myself to others. Everyone has their own journey . My dr also is for any supplements that help too. Unfortunately B1 thiamine didn’t work for me but for others it’s been amazing and worth trying . This disease is awful and at times depressing and overwhelming but we all have those moments. But once you find your level of acceptance you learn to manage your life with it. I too agree that exercise whatever you like to do, is the key to everything and to help with your thought process. Always remember you are not alone in this, we are all here for you. Take care. Karen

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UMass67
UMass67
in reply to Kwinholt

I can’t begin to thank you for your thoughtful response. I was in a state of disbelief on getting the PD diagnosis-you must have been ten times that. I’m 72 and never seriously ill with anything. However, sinemet and magnesium have relieved virtually all my symptoms for now. I walk a lot, and now I’m motivated to do that and more. I have work to do on the acceptance issue, but not much choice there, right? Thanks again-I appreciate this site!

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Kwinholt

Always here for you. 😊 K

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