I haven't really introduced myself yet

General
1

I have been looking through the site. I really don't know if I am at the right place or not.

I have been looking for some similar experiences and I think I just need to describe a little and ask.

For the last decade or so, I have been having migraines, and in the last 3 years, they have become chronic, about 2-3 a week. When I don't have a migraine, I have head pain, on the left side. My migraines are accompanied by vertigo, dizziness, nausea, left ankle,leg, hip, back, shoulder, neck pain.I have been going to a migraine specialist, but no drugs he has suggested have helped, leading me to wonder if there is a different answer. 4 years ago, I also discovered I have cerebellar atrophy. Over these years, I noticed I have to balance when I carry things, or I fall. Where I live it can be very windy, even wind can blow me off balance. I tend to list when I walk, especially to the left. When I stand, or get out of the car, or turn, I have to do it slowly, or lose balance. I cannot walk heel to toe without someone near to catch me.Lately, in the last year I have noticed I can't swallow sometimes. And other times I choke on my saliva.

My neuro doc suggested it could be genetic, I talked to my siblings, I found out some of them have been having balance problems, to the point of injury. I was tested, and am waiting results.

Do you think I am looking in the right place?

I saw an interesting discussion about ataxia being a symptom not a diagnosis

2

Ataxia is both a symptom and a diagnosis. Sounds like you’re in the right place to me!

3

Bella; Isen't any information helpful at this stage? I have CA and am learning every day. No Migranes, but

everythying else!! hugs,Susie

4

No migraines here but just wanted to say hello.

Patsy/CA/69/UK

5

Though this is a good site try disabled world you may find it useful

6

This may not be the right site for you, but I would welcome you non-the-less! I would also suggest finding a new neuro. Hugs!

7

Documents I picked up at NEURODEM Cymru (research) conference 16-11-2012

430-NEURODEMMigraineActiontrggers16112012084.jpg (1.12 MB) 431-NEURODEMMigraineActionfacts16112012082.jpg (1.33 MB) 432-NEURODEMMigraineActiontips16112012083.jpg (1.55 MB)
8

I think you have found the right place. I could have written your story myself! I

I have EVERYTHING you have mentioned.

I have hereditary SCA20 (spino cerrebral ataxia type 20) There is no test for it but I had an MRI and a CT scan to confirm it about 5 years ago as there are several members of my family who had/have it including my mother.

Suggest this to your neuologist as it may be a possibility.

9

Documents I picked up at NEURODEM Cymru (research) conference 16-11-2012

427-NEURODEMMigraineActionfacts16112012082.jpg (1.33 MB) 428-NEURODEMMigraineActiontips16112012083.jpg (1.55 MB) 429-NEURODEMMigraineActiontrggers16112012084.jpg (1.12 MB)
10

I understand how you feel. I had many years of migraines and then they stopped. I was diagnosed with early onset demencia (sorry my spelling has gone) and then that was changed to SCA.

I lose my balance alot but also feel my memory, instant recall and also recent things with my memory are involved. My wording, spelling and reasoning.

I am still trying to investigate and it's very hard when you don't see your neuro dr. often to ask questions.

Keep searching for answers.

Take Care

11

Welcome Bella! Yes, if you have atrophy of your cerebellum, I would say you have "ataxia". I was diagnosed about 8 years ago with sporadic cerebellar ataxia (non-hereditary/unknown cause). It effects my balance/gait (I use a cane to prevent falls), dexterity (writing/printing/fine motor skills), speech (slurred), and swallowing (choking/coughing). I don't have migraines. I do have some pain in joints/neuropathy in hands. You say you have pain on your left side and list to the left? It could be the left side of your cerebellum is affected more than the right side. I agree with Julie, maybe you should get a second opinion from another neurologist. If you google "cerebellum exercises", you should find some to strengthen the left side of your cerebellum. Of course, I'm no doctor as I'm just guessing. The results to your tests should give you more answers regarding the "type" of ataxia you're dealing with, especially if there are other family members having problems. This site is great for support and answers to you questions! ;o)

12

Thanks for those. Interesting

Alan Thomas said:

Documents I picked up at NEURODEM Cymru (research) conference 16-11-2012

13

Yes any information is good at this point. How long have you had this? Theres alot to learn, huh?



Susie said:

Bella; Isen't any information helpful at this stage? I have CA and am learning every day. No Migranes, but

everythying else!! hugs,Susie

14

Wow, Rose. I read the first few lines of your post and started wondering if I had already responded. You description of symptoms sound exactly like mine to a point. I haven't found quite that match before. I suppose I'll be looking for more of your posts.

Bella, you sound like you are in the right place. The atrophy is the thing.

I agree that you should see another neuro. I went through quite a few doctors before ending up at UCLA. I highly recommend going to a neuro clinic at a medical school. The average neurodocs don't seem to run into ataxia very often. Take all test results with you if you can. When I was diagnosed at UCLA, they read MRI film from 5 years earlier and saw the atrophy that other doctors had missed.

I don't often post here, but welcome. It is very frustrating trying to find information sometimes. I hope this forum helps.

rose said:

Welcome Bella! Yes, if you have atrophy of your cerebellum, I would say you have "ataxia". I was diagnosed about 8 years ago with sporadic cerebellar ataxia (non-hereditary/unknown cause). It effects my balance/gait (I use a cane to prevent falls), dexterity (writing/printing/fine motor skills), speech (slurred), and swallowing (choking/coughing). I don't have migraines. I do have some pain in joints/neuropathy in hands. You say you have pain on your left side and list to the left? It could be the left side of your cerebellum is affected more than the right side. I agree with Julie, maybe you should get a second opinion from another neurologist. If you google "cerebellum exercises", you should find some to strengthen the left side of your cerebellum. Of course, I'm no doctor as I'm just guessing. The results to your tests should give you more answers regarding the "type" of ataxia you're dealing with, especially if there are other family members having problems. This site is great for support and answers to you questions! ;o)

15

That's interesting Willis! It makes me feel less "alone" with my ataxia as before I found this site, I felt as though I was the only person in the world with symptoms like mine...,I'm not kidding! Before I was diagnosed, I had never even heard of ataxia! Although I'd never wish ataxia on anyone, at least those of us that have it can be supportive of each other..., ;o)

16

Hi Bella,

Though I can not add any real help to the discussion, I can tell you that you are most welcome here on LWA.

It is always good to explore various avenues to 'pin down' our medical condition(s) and to seek help. LWA is a good place to do this.

Please update us as you can when or if you get to know more about your own health. It may be that some detail you think inconsequential could be of great help to others on LWA - even if it turns out you do not have ataxia!

I am not a medical professional but do see a lot of what other people with ataxia, including myself, have experienced in the experiences you relate in your post. By all means, suggest ataxia to your neurologist. Just remember that it is a suggestion only though!

Try to stay positive, best regards to you. :)

EDITED: My head says I have pressed the correct key but my eyes prove my fingers have been mischevious some times.! :)

Michael.

17

Willis, I would like to go to the University of Washington Medical Center. I did have my genetic testing there.

But it is two hours away. And I have a problem driving, I got a ride before. Thanks for the welcome.



Willis Whitlock said:

Wow, Rose. I read the first few lines of your post and started wondering if I had already responded. You description of symptoms sound exactly like mine to a point. I haven't found quite that match before. I suppose I'll be looking for more of your posts.

Bella, you sound like you are in the right place. The atrophy is the thing.

I agree that you should see another neuro. I went through quite a few doctors before ending up at UCLA. I highly recommend going to a neuro clinic at a medical school. The average neurodocs don't seem to run into ataxia very often. Take all test results with you if you can. When I was diagnosed at UCLA, they read MRI film from 5 years earlier and saw the atrophy that other doctors had missed.

I don't often post here, but welcome. It is very frustrating trying to find information sometimes. I hope this forum helps.

rose said:

Welcome Bella! Yes, if you have atrophy of your cerebellum, I would say you have "ataxia". I was diagnosed about 8 years ago with sporadic cerebellar ataxia (non-hereditary/unknown cause). It effects my balance/gait (I use a cane to prevent falls), dexterity (writing/printing/fine motor skills), speech (slurred), and swallowing (choking/coughing). I don't have migraines. I do have some pain in joints/neuropathy in hands. You say you have pain on your left side and list to the left? It could be the left side of your cerebellum is affected more than the right side. I agree with Julie, maybe you should get a second opinion from another neurologist. If you google "cerebellum exercises", you should find some to strengthen the left side of your cerebellum. Of course, I'm no doctor as I'm just guessing. The results to your tests should give you more answers regarding the "type" of ataxia you're dealing with, especially if there are other family members having problems. This site is great for support and answers to you questions! ;o)

18

How are you?

Do you know where I can find more information about type 20? I see my neurologist today, I will mention it to her.

I am still waiting the results of the genetic testing, it seems to take forever. I did talk to the genetic counselor, and they wanted to do further testing.

joan montgomery hunter said:

I think you have found the right place. I could have written your story myself! I

I have EVERYTHING you have mentioned.

I have hereditary SCA20 (spino cerrebral ataxia type 20) There is no test for it but I had an MRI and a CT scan to confirm it about 5 years ago as there are several members of my family who had/have it including my mother.

Suggest this to your neuologist as it may be a possibility.

19

Hi Bella.

My symptoms started appearing only last year. My neurologist let me clear one thing: To keep doing everything I've always done, I should spend the rest of my life practicing physical exercises and occasionally I would need physiotherapy.
I'm also more than a year consulting with a speech therapist, even when I questioned her about the problems swallowing my father had, she was categorical in saying that he urgently needed the help of a speech therapist.
I don't know the type of my ataxia yet, but for your statement, I think what has helped me can help you too ^ ^
Happy new year.

20

Hi Bella, I believe that Rose is so right about focused movements (regular focused exercize daily). If I skip a day I seem to get more stiff and tence. I also have mild headches. I used to have more mirgraines when I wasn't doing focused movements daily. In fact I forget that I had to deal with them before since I don't have them anymore. Thank you for this reminder I can add letting go of that pain to my list of things that the Yoga and Pilates that have helped me.

I also need to add nutrition seems to help any symtom. Helping my body be stronger to withstand any symtom or overcome it really. I've gone Gluten Free, no flour or refined sugars, additives or processed foods help allot. I've been feeling so good sometimes I forget that I had bad ataxia symtoms. I had refined sugar a few days back and it also reminded me and it threw me back into having symtom's so I had an aha moment because of that. I'm sure you must have journaled your foods for migrains right? Have you tried going off Gluten for a few months to see if it could help you?