Visit w the dr

General
1

Hi there,

I finally got my day in court (so to speak) (last time I was seen by a younger neuro because my guy had an emergency) and here is what I learned:

He said I have worsened slightly (seem slower) and "wobblier" to him--although my shrink said I seem the same. My bloodwork as of quite recently indicated (once again) a "positive" finding for a certain antibody known as Nuclear AB Adult, whatever that is. I also developed pain in my hips, (can hardly rise fast) and right big toe, which, comes whenever I have been stationary for a while. (The toe also has a bunion.) The hip pain vanishes after a few minutes of movement. My neuro thinks this is odd, and recommends that I see a rhematologist. My mammogram results were normal and now he thinks I should have a CT of my abdomen etc to rule out cancerous tumors which sometimes (rarely) make their appearance known via ataxia. I already had that horrible EUS test to rule anything pancreatic. I have nothing but an oldcycst near my pancreas.

He says I should use a cane--something I have been resisting because I feel as though it marks me. I have yet to see or meet anyone with CA .

I find sharps turns are very hard for me, as are uneven floors, getting in and out of cars, darkness, alcohol and bannerless staircases. a steep hill can cause me to tip forward or fall back. I am breathless and sweating after walking home from the movies (5 blocks about including one hill.)

Yet, I see that "mind-control" plays a signiicant role in ataxia--at least for me. I find that I can often talk myself out of a fall, for example. Or reach my theatre/movie seat without toppling on seated customers, and getting there upright by will.

Thoughts? N

2

Yes, indeed, my thoughts are with you. I experienced all of this in my late 50's [72 years old now], especially the hip pain that goes when I move around. That was cured with a memory foam mattress.

I had all the rheumatoid tests, heart, lungs, everything you can think of. All we negative and I was diagnosed with Lupus and treated for that for a year. Then they decided I havent got Lupus it was the effects of ataxia causing those symptoms.

I have elected not to have any more tests to monitor progression and my neurologist has referred me to a very helpful neuro physio. She now monitors my progress and keeps my mobility to optimum level.. I have improved over last few months. The exercises she has given me, train the brain to put one foot in front of the other and 'step' up.

I also exercise on wii fit and passive pedaller. There are some ataxias that are aggressive and cannot be helped in this way but hopefully yours can. Good luck with it and dont forget to smile. A cane is good idea as it indicates to others that they shouldnt bump into you. x

3

I have the same problems with staircases, hills and uneven ground. Some days are worse than others, I also get dizzy when I go into shopping malls with high ceilings and bright lights. I just slow my walking down and tell my self I am not going to fall. I keep telling my self Gods got this!!!!

4

It sounds like you got a thorough exam! Kudos! Most doctors don't know about Ataxia. My right hand shakes really bad and a doctor suggested I get a cane! Go figure. But bannisters, even floors are key as well as sticky slippers. I found any strength training is great for Ataxia. Unfortunately you listed all the problems we ataxians have...Good luck and best wishes to you.

5

NO CANE...WALKING STICK.. It is much more efficient and helps you walk more normally

6

Dear Neta, Wow, your post mirrored my own symptoms! I do use a cane (I was diagnosed with ataxia eleven ears ago and resisted, until I took a bad fall, injuring my back). That was about four years ago (still have problems with my back from that fall). I use a quad-cane now, as it gives me more stability. Actually, with a cane, people have been very kind, holding doors open for me, etc., which I appreciate. I exercise for strength and balance, as I want to keep my arm, leg and core muscles as strong as possible, for however long is meant to be. ;o)

7

Hi, I agree with Jonas. It’s time for a cane or Rollator. A cane “marks you”? If you fall and break your hip you will no longer take your walks to the movies or up and down hills or stairways. Don’t worry what others think YOU need to be safe in your surroundings. You have many issues with your health already!

8

It sounds like you have a doctor that is at least paying attention to you. About the cane. I really believe in using whatever assistive devices will let you do what you want to do. You can't think of a cane as something that marks you-- try to think of it as something that helps you get back and forth from the theatre and helps prevent a serious life changing fall. If you are walking with even a little more stability because of the cane you will ultimately be less tired and therefore able to do more stuff!

The issue I ran into with my poor balance was people mistook me for drunk. If I was tippy in the theatre I would rather the cane signalled (marked me?) as having a disability than the other possibilities and it is not such a bad thing for people to give you the courtesy of stepping out of the way and giving you a little extra room to get to your seat.

You are right that focus and mind control can go along way though.

I am with dlc about the strength training being very important and core exercises too to help keep the trunk of your body under the best control you can for added stability.

9

Hi Neta,

"Long time, no see"!

I thought people were supposed to pay "a penny for [someone's] thoughts", but here are some free ones! :-D

I went through a phase when I simply HAD to get a walking stick, as if I were saying "Yes, so I am disabled, okay? What of it?" But I figure pride and dignity might be hurt more by keep falling over, especially on my ass, or "looking drunk" even though I'm sober. Other people recognise it and respond better if one does have a recognised "Sign of Disability" - you're "allowed" to be wobbly then! ;-)

The antibody test you describe as "Nuclear AB Adult", is also known as ANA (Anti-Nuclear Antibodies, AB just being short for "antibody"). Do you know the level, and have they defined the subtype?

At a low positive of 1:40 Titre (40 per unit blood), up to 31.7% of the population can be positive (hence sometimes a "false positive"), but as you go up to 1:320 (320 per unit), 5% still are. Somewhere in between can occur in a range of conditions, of which the classic is Lupus (SLE), hence your Neuro suggesting you see a Rheumatologist about your hip/toe pain, so yes, do get that checked out. Some ANA subtypes just occur as a side-effect of some medications ("drug induced ANAs", or, as I think they should call them, "DIANA's"!!), other subtypes during some infections, some in autoimmune diseases (affecting the joints, thyroid gland, the brain, skin and others), and some occur in cancer (it's good to know they're being careful to rule that out):

Rates for false positives (or possibly side-effects of meds?):

http://www.ncbi.nlm.nih.gov/pubmed/9324014

General info on ANA's, see all four pages, including normal results on page 3:

http://www.medicinenet.com/antinuclear_antibody/article.htm

Some subtype info included at Wikipedia:

http://en.wikipedia.org/wiki/Anti-nuclear_antibody

Meanwhile, you say you can "hardly rise fast" and have pain in the hips and toe, which is relieved by movement. If the Rheumatologist says it's not a swelling or other joint problem, it could be slow movement (bradykinesia) and stiffness (rigidity). I see you mention problems with sweating and sharp turns (do you shuffle around on the spot?). So, do you have any (other) signs of Parkinsonism, such as stooped posture? These could all be taken as "non-motor symptoms" (NMS) of Parkinson's:


http://onlinelibrary.wiley.com/doi/10.1002/mds.21813/full

How To Detect Parkinson's

http://www.youtube.com/watch?v=rPI1J56VhV4

Bradykinesia tests:

http://www.youtube.com/watch?v=CH7UTwQgMm8

And a Parkinsonisan Gait check, I often look like patient 4 with MSA, this is what I mean by "slow rising":

http://www.youtube.com/watch?v=Be2Enu65ZE8

Hope some of this helps.

Yours,

Abs

10

I too find getting out of cars, darkness uneven surfaces difficult, I am 54 years old and I look like a very old woman when I do these things.

Thanks for posting this, my main issue at the moment is my private pension whichrose replied to Alex Downes’s discussion “Very mild ataxia” on Living With Ataxia - Online Support Group

Have you had an MRI of your brain, Sarah? I ask because I was diagnosed with Sporadic Cerebellar Ataxia (idiopathic/unknown cause) eleven years ago, although I had very minor symptom starting about e…

To view the new reply, visit:
http://forum.livingwithataxia.org/forum/topics/very-mild-ataxia?uŷcommentId=2508026%3AComment%3A155067&xg_source=msg_com_forum I am refused workplace pension as I’m not disabled enough.

11

I find the same problems, dark,uneven surfaces and I do think there is a bit of a slow worsening, and a I have had an MRI but no expiation of it

12

Neta, I so appreciate reading your post, and the replies. The things you describe are so much a part of my daily life. You absolutely are NOT alone in this! I am getting ready to take a trip to London, and the anticipation is much marred by the difficulty of getting around, negotiating airports, tube stations, city streets, etc. I also "will" myself to put one foot in front of the other and get through the day. Thank you.

Michael

13

Have a great trip to London, Michael! I don't know if you've ever been before, but I went years ago, and it's amazing! Enjoy..., ;o)

14

Rose, this is my fifth trip since September 2013. I have been going as much as I can, as I don't know how much longer I can do it. I love London, and this time will be making day trips to Canterbury, Salisbury, and Cambridge. I have studied British history all my life. Thank you for your good wishes.

Michael

15

Wow, five trips since September 2013! You are very fortunate! I LOVE London and hope to visit again! Must be in my blood, as I'm English (moms side) and Polish/German (dad's side). Mom's family was born there (Plymouth) except mom, as she's the baby and was born in US. Love a good cup of hot tea (grew up on it) and a Cornish pasty...,ha! Anyway, have fun visiting all those places! ;o)

16


Thanks for all the info. I think my ANA "count" was at 1.7, speckled. Not sure what this means. Somehing bad,I am sure. N
Abby_UnknownCA said:

Hi Neta,

"Long time, no see"!

I thought people were supposed to pay "a penny for [someone's] thoughts", but here are some free ones! :-D

I went through a phase when I simply HAD to get a walking stick, as if I were saying "Yes, so I am disabled, okay? What of it?" But I figure pride and dignity might be hurt more by keep falling over, especially on my ass, or "looking drunk" even though I'm sober. Other people recognise it and respond better if one does have a recognised "Sign of Disability" - you're "allowed" to be wobbly then! ;-)

The antibody test you describe as "Nuclear AB Adult", is also known as ANA (Anti-Nuclear Antibodies, AB just being short for "antibody"). Do you know the level, and have they defined the subtype?

At a low positive of 1:40 Titre (40 per unit blood), up to 31.7% of the population can be positive (hence sometimes a "false positive"), but as you go up to 1:320 (320 per unit), 5% still are. Somewhere in between can occur in a range of conditions, of which the classic is Lupus (SLE), hence your Neuro suggesting you see a Rheumatologist about your hip/toe pain, so yes, do get that checked out. Some ANA subtypes just occur as a side-effect of some medications ("drug induced ANAs", or, as I think they should call them, "DIANA's"!!), other subtypes during some infections, some in autoimmune diseases (affecting the joints, thyroid gland, the brain, skin and others), and some occur in cancer (it's good to know they're being careful to rule that out):

Rates for false positives (or possibly side-effects of meds?):

http://www.ncbi.nlm.nih.gov/pubmed/9324014

General info on ANA's, see all four pages, including normal results on page 3:

http://www.medicinenet.com/antinuclear_antibody/article.htm

Some subtype info included at Wikipedia:

http://en.wikipedia.org/wiki/Anti-nuclear_antibody

Meanwhile, you say you can "hardly rise fast" and have pain in the hips and toe, which is relieved by movement. If the Rheumatologist says it's not a swelling or other joint problem, it could be slow movement (bradykinesia) and stiffness (rigidity). I see you mention problems with sweating and sharp turns (do you shuffle around on the spot?). So, do you have any (other) signs of Parkinsonism, such as stooped posture? These could all be taken as "non-motor symptoms" (NMS) of Parkinson's:


http://onlinelibrary.wiley.com/doi/10.1002/mds.21813/full

How To Detect Parkinson's

http://www.youtube.com/watch?v=rPI1J56VhV4

Bradykinesia tests:

http://www.youtube.com/watch?v=CH7UTwQgMm8

And a Parkinsonisan Gait check, I often look like patient 4 with MSA, this is what I mean by "slow rising":

http://www.youtube.com/watch?v=Be2Enu65ZE8

Hope some of this helps.

Yours,

Abs

17

Have a superb time in London. I was there,too,in 2013. My visit, I think, was also marred/dictated by ataxia. Nevertheless,I went along to a show, museum, someone's home 4 dinner, walks in the streets etc. I have no English blood (Belgian) but I,too, have read alot of English history. In fact, I am now reading a superb bio of Bertie, son of Victoria, aka as King Edward VII by someone named Jane Ridley. Fat book. Great read. Never knew that he and old Victoria clashed so much. N

Hoku said:

Rose, this is my fifth trip since September 2013. I have been going as much as I can, as I don't know how much longer I can do it. I love London, and this time will be making day trips to Canterbury, Salisbury, and Cambridge. I have studied British history all my life. Thank you for your good wishes.

Michael

18

Neta, I have read that book, and found it fascinating. I have quite a library on British history, and Victoria is one of my favorites to read about. I am currently reading "Victoria, a Life" by A.N. Wilson.

Best Wishes,

Michael