After doctors appointment

General
1

So is it just me or have other experienced depression after going the Neurologist? I’m usually ok through the months I don’t see the doctor, but I’ve seen a neuro twice in another state and once near me and every time after the appointment for a couple weeks I get depressed. I think that it’s going to see the doc and them telling me there’s nothing we can do for it, just treat symptoms. I guess it is the lack of hope. Because I’ve had Crohns 12 years and have not experienced this with them. I guess it’s cause they have medicines that help, though there is no cure.

So now my question, what do you do for self care? Like hobbies…what helps you get through?

2

I, personally, don't go the nuerologist, he told me and my sister when we were diagnosed that there was no need to come back, unless WE wanted to, since there was not a cure. I simply don't go. I inherited this disease from my father and he lived with me for 2 years before he passed and I know so well what I am in for.

3

I've had the same experience except my wife can see it before I can. My doctor put me on zoloft which has really helped me.

4

Hi, you are correct,I feel the same. I go every 6 months to Mass General to see my neurologist. He just gets an update on how I am doing. That’s it. He is the head of the Ataxia unit there and just wants to see how I am doing, and how things are progressing. After I leave there I just shake my head. Seeing all the poor people there with all their limitations makes me very thankful for what I have left. Hope this helps you.

5

I used to feel this but... I now see Dr Rajith de Silva who is very upbeat and has encouraged me to see physio.

http://www.nuffieldhealth.com/consultants/de-silva-rajith

I heard about him from members of my support group .. I looked him up on the internet and sent him an email to which he promptly replied. I am also fortunate that he gives consultations in a reasonably local hospital.

He has accepted my decision not to have any more tests for monitoring progress or a definitive diagnosis but wants to see me again in 6 months.

It is interesting that you have Crohns. My son has Crohn's and his daughter has Coeliac. Apparently there is close similarity. There is also of course Gluten Ataxia but I understand that this is entirely different. Gluten ataxia affects the brain and Coeliac affects the gut.

I think it's probably best not to dwell on one's health but with so much available to read on the internet, it is difficult not to!

Exercise seems to be good for morale and getting outside to enjoy the big blue sky.

Patsy x

6

First of all I totally disagree about continuing to see a Nero to stay on top of your ataxia. I look forward to going. I go on a regular basis for quite a few reasons. I'll list as many as I can remember right now I'm sure I forget to include a few maybe other's here will post some too.

To stay connected to find out what's is new in advancements for SCA.

To maintain where I'm at. For me it's good to nip any symptoms in the bud before I allow them to get beyond my control and get another's view of ways around them if possible. The key here is their VIEW. Sure they have book study and school on medical information that I don't have but I live in my body they don't know the details of that really. So I pick their brains while there and take what I like and leave the rest. They aren't God. They don't know everything.

Also I want to get confirmation of where I'm at now and to show them there are people that have ataxia that can work on their symptoms to help them get better with them. They need to spread that word that it is possible to help yourself to different degrease.

As a team member to work with problems that arise.

I have to be honest with you. I don't go to see a Nero to get a magic pill to make this ataxia go away, because that wont happen in my eye's, and that would depress me if I did. I also don't have a Dr or team of Dr's that tell me that there isn't anything I can do. Maybe it's time to find a new one that agrees with a different way to think, progressive maybe? I did run across a few at first until I found I got so mad at that that made me do something about my state and show them I can do......................... I really didn't listen to them when they said that because there is always a fist time for everything.

I'm not going to give into this ataxia or give up on myself and you shouldn't either no matter where your at with your ataxia something can be done to make things better. Even at the National Ataxia Foundation Conference the Dr.'s on the panel said there is new hope especially right now with all the advancements in finding a cure. I'm sorry to be so blunt about this but accepting what Dr.'s tell us about our SCA just makes them do it to new diagnosed ataxian's and I don't feel that's a good picture to give because it's NOT true! Just because they don't know doesn't mean it's true.

So now to answer your question: I eat my meds as vitamins and minerals I need daily and always on the lookout for foods and things I can do to help with emotions, ackes and pains, funtions etc.even if they are for other diseases. I'm interested in how our brain works and try to exercise that as well as my body daily to fend off problems before they rise up.

As far as Hobbies go, I scrapbook for my Grandkids to let them know about their lives growing up and how I see things so when I am gone they will know what I stood for and wasn't for.

What helps me get through is reading my NIV Bible each morning. It's positive to me. It took me lot's of deep thought after reading a scripture and decoding what it means to my life. I want my life to count. Knowing who I am in Christ and realizing since I'm in a new chapter of my life there has to be a reason for it and using the ataxia for actually helping another person in someway even if it's small actually helps me feel real JOY daily.

All of it takes real work. I also schedule a day off in-between and have a scheduled pity party but won't alow myself to stay there long cause logically I know it's not good to be there too long. I tell my body what to do. If I let my body and brain go on how I felt I'd be in trouble. Because I research regularly and know our body is ruled by our thinking I choose what goes in it and comes out. If I start to have a bad thought or mood etc I ask God to help me understand it or at least have more strength to go through it not take it away because I must have it for a reason. Either to learn something from having go through it or to be able to use that to help someone elce go through it. It took allot of asking God for wisdom to understand the Bible and other things that happen in my life. I don't always get an answer but that's where the trust comes in.

I think it comes down to making a choice how to be or what you want to allow into life.

7

My husband used to cycle a lot and now does his best to cycle regularly on a fixed turbo in the shed - not the same as the Alps but gives him exercise and a feeling of achievement.

He also spends a lot of time (approx. 1hr) morning and evening chanting as part of his SGI Buddhism practice. It has changed his world and ours. He was very low and depressed with the progression of his illness, however the chanting has given him a new view on life and who/how he is. He's met wonderful people from all walks of life, each with their own reason to chant and all so positive, happy, kind and understanding. There are very local meetings and other bigger meetings at the centre. The SGI encourage chanting for something you desire rather than the usual meditation to empty your mind. Unbelievably some of the things he has chanted for are happening!

The book, The Buddha, Geoff and Me, Ed Canfor-Dumas started him on this journey.

Chanting gives him a focus in the day, it fills time that can no longer be used to exercise, go out, cook, DIY etc and it completely fulfils him. He has never been in the slightest bit spiritual so this is a really surprising discovery. I'm sure religion can also provide this fulfilment for some people.

He does have to work hard at staying upbeat, it's not easy but he somehow manages. It certainly helps when he is busy and coping at work. His goal now is to find something to give the same satisfaction out of work so that he can see work as a bonus, not a necessity ie: not get down when it's not going well.

He has been taking some great fruit/veg/berry capsules for the past year and they seem to have improved his mood and also his health - no colds or flu last winter for the first time and just looking healthier and more glowing.

8

Hi. Do you think it has anything to do with the doctors’ manner? I know if I pick up that they think I’m wasting their time and they don’t want to listen, they’d rather be someplace else, then I feel terrible. Sometimes doctors act like that because they’re uncomfortable when the patient isn’t getting better (and they lack the skills to hang in with the patient emotionally.) Also sometimes I project my own fears/discomfort onto them. So it takes me a few days to get over it. Which is where you came in, wisely asking about hobbies and other diversions. Good for you. I’m sure there will be many helpful messages posted- which I look forward to reading.

9

Thanks Mish. :slight_smile:



Mish said:

Hi. Do you think it has anything to do with the doctors’ manner? I know if I pick up that they think I’m wasting their time and they don’t want to listen, they’d rather be someplace else, then I feel terrible. Sometimes doctors act like that because they’re uncomfortable when the patient isn’t getting better (and they lack the skills to hang in with the patient emotionally.) Also sometimes I project my own fears/discomfort onto them. So it takes me a few days to get over it. Which is where you came in, wisely asking about hobbies and other diversions. Good for you. I’m sure there will be many helpful messages posted- which I look forward to reading.

10

Wow Jeannie! Send me your email so we can keep in touch. I am a Christian. I’m 30 now, but became one at age 7. I am not a writer, but I have written a book that’s been published…it’s about forgiveness. It’s called, I’ll Love You Anyway loving others despite the past…I wrote about my dad who had sca2 too, and our relationship. Look it up on amazon if you’d like. I’ve written some on Gods purpose and human suffering. Writing is therapeutic for me, and going to church, and being around other Christians where we have similar beliefs and can encourage one another. But this is still tough.
Blessings,
Lori



Jeannie Ball said:

First of all I totally disagree about continuing to see a Nero to stay on top of your ataxia. I look forward to going. I go on a regular basis for quite a few reasons. I’ll list as many as I can remember right now I’m sure I forget to include a few maybe other’s here will post some too.

To stay connected to find out what’s is new in advancements for SCA.

To maintain where I’m at. For me it’s good to nip any symptoms in the bud before I allow them to get beyond my control and get another’s view of ways around them if possible. The key here is their VIEW. Sure they have book study and school on medical information that I don’t have but I live in my body they don’t know the details of that really. So I pick their brains while there and take what I like and leave the rest. They aren’t God. They don’t know everything.

Also I want to get confirmation of where I’m at now and to show them there are people that have ataxia that can work on their symptoms to help them get better with them. They need to spread that word that it is possible to help yourself to different degrease.

As a team member to work with problems that arise.

I have to be honest with you. I don’t go to see a Nero to get a magic pill to make this ataxia go away, because that wont happen in my eye’s, and that would depress me if I did. I also don’t have a Dr or team of Dr’s that tell me that there isn’t anything I can do. Maybe it’s time to find a new one that agrees with a different way to think, progressive maybe? I did run across a few at first until I found I got so mad at that that made me do something about my state and show them I can do… I really didn’t listen to them when they said that because there is always a fist time for everything.

I’m not going to give into this ataxia or give up on myself and you shouldn’t either no matter where your at with your ataxia something can be done to make things better. Even at the National Ataxia Foundation Conference the Dr.'s on the panel said there is new hope especially right now with all the advancements in finding a cure. I’m sorry to be so blunt about this but accepting what Dr.'s tell us about our SCA just makes them do it to new diagnosed ataxian’s and I don’t feel that’s a good picture to give because it’s NOT true! Just because they don’t know doesn’t mean it’s true.

So now to answer your question: I eat my meds as vitamins and minerals I need daily and always on the lookout for foods and things I can do to help with emotions, ackes and pains, funtions etc.even if they are for other diseases. I’m interested in how our brain works and try to exercise that as well as my body daily to fend off problems before they rise up.

As far as Hobbies go, I scrapbook for my Grandkids to let them know about their lives growing up and how I see things so when I am gone they will know what I stood for and wasn’t for.

What helps me get through is reading my NIV Bible each morning. It’s positive to me. It took me lot’s of deep thought after reading a scripture and decoding what it means to my life. I want my life to count. Knowing who I am in Christ and realizing since I’m in a new chapter of my life there has to be a reason for it and using the ataxia for actually helping another person in someway even if it’s small actually helps me feel real JOY daily.

All of it takes real work. I also schedule a day off in-between and have a scheduled pity party but won’t alow myself to stay there long cause logically I know it’s not good to be there too long. I tell my body what to do. If I let my body and brain go on how I felt I’d be in trouble. Because I research regularly and know our body is ruled by our thinking I choose what goes in it and comes out. If I start to have a bad thought or mood etc I ask God to help me understand it or at least have more strength to go through it not take it away because I must have it for a reason. Either to learn something from having go through it or to be able to use that to help someone elce go through it. It took allot of asking God for wisdom to understand the Bible and other things that happen in my life. I don’t always get an answer but that’s where the trust comes in.

I think it comes down to making a choice how to be or what you want to allow into life.

11


You sound like my ex, he had a recording studio, and still does all those things, but unfortunately, I am the one with Ataxia...don't think he could deal with it, so he found someone else.
Searcher said:

No way the Doctors can fool me , I can tell if they are just going thru the motions or outright lying , comes from extensive psych training I had many years ago. But yes I do get a down feeling after visits , with me its frustration mostly because there is just no information from them, they dont know , havent got a clue ! Some try and help , others just go through the motions. One Neuro said " wow you're a Fing mess , but I cant help you " it hit home to hear that but at least he was honest .

What I do to keep upbeat , well...I get out as much as I can , I work on my antique cars every day , I own a recording studio and that keeps me busy most of the year, I cant play and sing like I used to but I keep pretty busy with writing music and working with many bands . Really I do everything I used to do for hobbies except now I do it in slow motion, the trick is just to stay young at heart , anything is doable , just that I have to adapt how I doable it ........

12

Dear Iwentdownunder, I was diagnosed with ataxia eleven years ago. For nine years I saw a neurologist (specialist/researcher in ataxia) once each year. He retired, and I was referred to another neuro that is also a specialist/researcher in ataxia. He gave me the choice of seeing him every six months or yearly. I chose every six months, as I want to be monitered, and also find out first hand if anything new comes up. I have been on an antidepressant (Sertraline, generic Zoloft) for about 19 years, originally for depression caused by a side-effect of a prescription I was on for a cardiac arrythmia. That's another long story. Basically, I try not to dwell on my ataxia and symptoms. I also try to do for others, as it takes my mind off myself, makes me happy and gives me a purpose (I'm a retired social worker). Each year, I do physical therapy, as my insurance will pay for 15 or 16 sessions of regular pt per year. Right now I'm doing aquatic therapy (my insurance will only cover six sessions of aquatic therapy), which I LOVE! Also, my neuro has a positive attitude and it rubs off on me. I exercise for strength and balance (safely) and eat as healthy as possible! I like to draw with charcoal and colored pencils and paint with acrylic paints. My dexterity is really compromised now, so It's a challenge! I'm slow, but that's my new "normal". I also enjoy making greeting cards. I just continue to count my blessings and do the best I can! Although I can't control having ataxia, I can control my attitude about it...,My best to you..., ;o)

13

Searcher,

You are so right about the ex.....I am so much better off without him......

14

Suggestion: See a glutenataxia specialist. The gluten-free diet has helped me a lot. However, I had to experiment a lot to find the right balance for myself. No grains, 10 servings of ceggies (mostly dark green such as kale), protein, no sugar. It helps my mood swings and ataxia a great deal! Good luck!

15

I think even my medication for Crohn’s has gluten in it. Ive been tested, blood tested, to see if I have a gluten intolerance which I don’t. Are you saying staying off gluten would probably still make me feel better?

16

It could make youfeel better. Many times these tests give false negatives and false positives.You might want to check out the Paleo diet and adapt that and eliminating gluten Best to do it with a gluten specialist's recommendation—either a doctor or nutritionist who has a history of successful practice with patients tho had your issues. You can then ask to communicate with these patients..

17

I have been meaning to reply to this for awhile, but I'm afraid I haven't been on the computer enough. I relate very closely with your feelings on this one. I happen to have an excellent neurologist, and a wonderful primary doctor. They work together, and work very hard on keeping my symptoms stabilized. Despite this, I still find that when I know I am up for an appointment I often get stressed. Then, afterwards, I leave feeling very down. I think that part of it is when I am at home or just living life I can get into a routine. I almost can forget sometimes (maybe forget is the wrong word, but I don't dwell on) the fact that I have a "rare disease" or a unique condition. I get so tired of doctors saying that they just don't know. Or how "interesting" my symptoms are, yet they can't give me any answers.

I have realized that often when I went to my appointments I kept going in with the same expectations I did at the beginning. That somehow, despite all the times I've gone, I was going to suddenly receive an answer or be given a magical AHA - this is what it is and this is how we fix it. There isn't one, unfortunately. I am beginning to do better after my appointments by making myself understand that I shouldn't have any expectations from them, except to manage my condition. This is what they are doing, to the best of their ability. And my life isn't going to change much, even if I do receive answers or a better medication. It is always going to be about doing my very best to manage what I have. So now I try to focus on the positives. Exercise has helped enormously. Not only does the physical exertion help relieve stress, and make you healthier, but I feel victorious. My primary doctor gave me the best advice. He told me not to exercise unless I am able to be consistent. For awhile I was very sporadic, and would push myself hard only to be down for several days at a time. This led my symptoms to be worse, and made me feel like a failure. So now I push myself to do the same amount of exercise at least 5 days a week for the same amount of time. Even when I don't feel like it I push myself to do something. My energy level has gone up, some of my symptoms have gotten better, and I FEEL better. That is about the best advice I have. I still get down sometimes after visiting the doctor, but I just try to distract myself with other things so I don't focus on it so much. I think it is very normal to feel the feelings your having. Don't feel alone though.

18

Consistent exercise and consistency in everything helps me feel better with the physical, emotional, and spiritual. thanks!