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update (unsteady, floating feeling while walking)

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Posted 10/3/2009 1:39 AM (GMT 0)
Hi all,

I put a call into my neurologist today, not sure why I didn't do it earlier eyes he called me this evening and said he didn't think it was caused by inner ear problem or a stroke (thank goodness). He said it could be from an aura without the migraine (which I am doubtful) or of course........ I'll give you one guess ........ LUPUS so he wants to do an MRI (hopefully one day next week). I asked what he would be looking for or what would show up, he said if it was lupus spots would show up in my brain rolleyes

Just seems to be one thing after another. I am trying really hard not to worry but this "unsteady, floating feeling" while I walk is not getting any better and had been going on for well over a month along with the increased fatigue and other weird stuff.

I sure would appreciate your prayers and positive thoughts / energy.

I hope everyone has a great weekend!
Posted 10/3/2009 4:28 AM (GMT 0)

Hey Stacie, sorry to hear things haven't gotten better.    Hope you can get the test done soon.  My mom has dealt with the vertigo/dizziness/unsteadiness thing (she always had trouble describing it) off and on for years.....finally got a dx of Meniere's (did I already tell you this? confused Sorry if I did...) and Meniere's is another autoimmune disorder.   At any rate, prayers and positive thoughts coming your way yeah .   Try not to worry.

Hugs,

Lucy

Posted 10/3/2009 5:24 AM (GMT 0)
Stacie,

I hope your MRI is scheduled real soon so you won't have to play the waiting game. I pray that it isn't lupus cerebritis. Do let us know the minute you learn something. Take care.

Pat
Posted 10/3/2009 9:17 PM (GMT 0)
Thank you Lucy and Pat, I will let you know as soon as I hear something. Thank you for your friendship and support, it means a lot to me. smilewinkgrin
Posted 10/3/2009 10:05 PM (GMT 0)
Stacie, I have the unsteady/vertigo/floaty problem too at times, but my neurologist has always attributed it to celiac ataxia. I know you have celiac, so is this something you've considered? Celiac disease can cause white spots to show up in brain MRIs as well.

I'll be praying that your doctors will have the wisdom to be able to diagnose you and treat you appropriately! And that you feel better soon!

Hang in there!
JoAnn
Posted 10/3/2009 11:33 PM (GMT 0)
Hi JoAnn,

Thank you for the prayers, I need them. wink

I am not familiar with celiac ataxia, would you have the symptoms if you've been on a strict gluten free diet for over 6 years?? Oh and I didn't have these symptoms when I was dx in 2003, they just popped up a month or so ago.
Posted 10/4/2009 2:25 AM (GMT 0)
Hi Stacie,

I've read up on celiac ataxia a little bit since my neuro thinks that's my problem. Here's the abstract of a medical article describing one type of celiac ataxia in four patients (from the medical journal Brain)

http://www.ncbi.nlm.nih.gov/pubmed/7496772

Progressive myoclonic ataxia associated with coeliac disease. The myoclonus is of cortical origin, but the pathology is in the cerebellum.

We report four patients with a progressive myoclonic ataxic syndrome and associated coeliac disease. The onset of the neurological syndrome followed the gastrointestinal and other manifestations of coeliac disease while on a gluten-free diet, in the absence of overt features of malabsorption or nutritional deficiency. The condition progressed despite strict adherence to diet. The neurological syndrome was dominated by action and stimulus sensitive myoclonus of cortical origin with mild ataxia and infrequent seizures. Plasmapharesis and immunosuppressive treatment were tried in two patients but were not beneficial. Post-mortem examination of the brain in one case showed selective symmetrical atrophy of the cerebellar hemispheres with Purkinje cell loss and Bergmann astrocytosis, and with preservation of the cerebral hemispheres and brainstem. Coeliac disease should be considered in the differential diagnosis of all patients presenting with a progressive myoclonic ataxic syndrome.

Apparently the damage to the brain can occur even if gluten free. Also, some people have "refractory sprue", which is celiac disease that does not go into remission on the gluten free diet.

Here are a few abstracts of other articles discussing brain damage done by celiac disease; apparently there are several different types of neuro problems associated with celiac:

http://www.ncbi.nlm.nih.gov/pubmed/2006004
http://www.ncbi.nlm.nih.gov/pubmed/8598704
http://www.ncbi.nlm.nih.gov/pubmed/4022355

Also, there is an interesting thread on another celiac forum; you may want to read it, especially post #7:

http://www.celiac.com/gluten-free/index.php?showtopic=9836

However, I'm glad that you didn't have these symptoms when first diagnosed with celiac....maybe your unsteadiness, etc., is due to something else entirely. I just thought I should mention the fact that celiac can cause neurological problems because not many people know this.

In any case, I'll continue to remember you in prayer....please keep us posted!
JoAnn
Posted 10/4/2009 6:14 PM (GMT 0)
WOW JoAnn,

I was reading on Celiac.com last night and it seems they have really come a long way over the last couple of years, a lot of research has been done. Thank you for mentioning it to me, I will ask the neuro about it and look at the links you gave me. This info is just mind blowing. I now hope the doctor's in the USA see that celiac disease is not that rare and start diagnosing people right away instead of blaming it on IBS, stress, etc.

Thank you again for in the info and links and especially the prayers! wink
Posted 10/4/2009 9:56 PM (GMT 0)

I agree....WOW!  Not good news, but the links were certainly informative.  Thanks JoAnn.  I have a cousin with MS - only 30 yrs old.  I'm going to make sure he's aware of the celiac link.  Scary stuff.  There isn't a lot of activity on the celiac forum - so I'm going to ask this question here.....

I have been taking lots of fish oil, Bvitamins, and Cinnamon, and other vitamins per my doctor's order after the celiac dx.  This is to address other issues as well as celiac.  But 3 times now I've had a really bad stomach reaction (which I didn't get very often at all before going gluten free).  I blamed the cinnamon.  But now I'm beginning to wonder, since this last one came on Friday after eating a salad at a restaurant.  It had cut fresh fruit on a bed of lettuce. I used a miniscule amount of dressing that looked fairly innocent (clear, like cornstarch might have been used as a thickener.  I had a headache start that afternoon which continued into Saturday afternoon.  Saturday night I had extreme bloating and belching and felt like air was getting trapped in my esophagus.  I was really uncomfortable.  Today is slightly better, but I'm not eating much or feeling as energetic as I was before Fri. afternoon.  Is this being "glutenized"?  I suppose everyone can have different reactions - but I'm now wondering if it is more that than the vitamins/cinnamon.

Thoughts?  Thanks -

Lucy

Posted 10/4/2009 10:18 PM (GMT 0)
Hi Lucy,

For me, when I am "glutenized" I have horrific cramp / abdominal pain, diarrhea, etc. I am very careful, and this last time was from a milkshake at Chick-fil-a, warning: they do not wash their blender when making cookies n cream to chocolate or peach!!!!! Hard way to find that out!!!! But you are right everyone is different. What kind of symptoms did you have before dx with Celiac?

I hope you feel better soon!
Posted 10/5/2009 1:02 AM (GMT 0)

Hi Stacie - I basically had few GI issues before going gluten free.  Mostly IBS kinds of things - bloating, belching, alternating diarrhea and constipation, but not a lot of that.   I have heard you get more sensitive to gluten the longer you are off of it.  Perhaps that has something to do with the stomach upsets I'm having now.  Either that or I'm sensitive to things I formerly ate little of, but have been including much more frequently in my diet.  Like dairy, corn and rice.  I've always had a problem with dairy, enough that I limited my portions and frequency.  Maybe that's it. 

Aside from the recent stomach issues - it's been 6 wks of gluten free eating - I have finally begun to notice less pain and fatigue.  And just the other day, my brain felt "clearer" and I was my formerly witty self for a few hours LOL!  I feel encouraged - and hope I can get the source of the current stomach problems figured out.  I am also MUCH more constipated on the gluten free diet.  Is that normal?

Lucy

Posted 10/5/2009 3:58 AM (GMT 0)
Hi Stacie and Lucy,

I'm so glad the info was helpful; yes, some of the new research out there boggles the mind! They are now saying that as many as 40% of the population may have problems with gluten....not celiac necessarily, but at least gluten intolerance, which apparently has the same symptoms! The discovery that celiac itself apparently opens the door for other autoimmune diseases to develop is such a breakthrough; it may eventually lead to all sorts of new treatments for AI diseases.

Lucy, congratulations on making it through the first 6 weeks of the gluten free diet!! FYI, my first symptom when I'm glutened is a blinding headache, then diarrhea and gastric symptoms follow. But everyone has different reactions....sometimes I have different reactions from one episode to the next!

Unfortunately even if the dressing looked OK, it could have easily contained gluten. But the bigger risk in any restaurant is just plain cross-contamination; in the kitchen they may have sliced the fruit on a cutting board that had previously been used to slice bread, for example.

Did you inform the restaurant staff of your gluten issues before ordering? Most times if I have a talk with the manager first, they are VERY careful with my food! :)

You can be constipated on the gluten free diet, depending on what you're eating. I used to eat a lot of the packaged gluten free substitutes such as rice or corn pasta, corn tortillas, gluten free breads, etc. But I have recently gone completely grain free and I feel better. I bake exclusively with almond flour (see http://www.elanaspantry.com/) and coconut flour (see http://www.freecoconutrecipes.com/gluten_free_recipes.htm) now; and we try to eat mostly fresh unprocessed foods: meat, fish, chicken, nuts, eggs, fruit, vegetables, etc. Both the almond and coconut flours are much higher in fiber than rice flour or other gluten free flours, so they help with the constipation. I also like to add flax meal to foods and baked goods, which is very high fiber too.

Take care....
JoAnn
Posted 10/5/2009 4:02 AM (GMT 0)
P.S. Eating grain free, mostly fresh unprocessed foods seems to be helpful for many different autoimmune diseases. I know of people with Crohn's, RA, fibro, even lupus, who say that their conditions have gone into remission on this type of diet. So this discussion is still pertinent to the lupus forum! :)
Posted 10/6/2009 12:24 AM (GMT 0)

Thanks again JoAnn - I am trying not to eat the processed gluten free foods anymore than I did the regular stuff.  It's harder - I always did my own baking, cookies, bread, etc. and I'm not even trying to do that right now.  I made some cornbread with rice flour and corn flour and, well....it just isn't the same.  So the menu items have dwindled.  We are making our own ice cream for when we need some sweetness.  And I guess I haven't given up chocolate - just cut down.  I am planning to practice a few recipes for Christmas when the kids are home.....figuring it will require some test runs and adjustments.  Largely we stick to beef, fish,beans, fruit, vegetables and rice.  Kinda boring sometimes, but I do find that my palate is changing (improving) and simple foods taste better than they did before....or maybe I'm just hungrier tongue

Lucy

Posted 10/6/2009 2:15 AM (GMT 0)
Stacie, I'm probably way behind in this discussion, but do you think it could be related to medication? Also, do you takeyour blood pressure alot? I get that feeling from blood sugar--lowor high, electrolyte imbalance, dehydration--which can happen even if you are drinking fluids but your body can't keep up, and through the brain damage I have from untreated endocrine problems and whatever else may or may not be wrong with me. I do not definitelynot have celiac disease, but am unable to properly metabolize carbohydrates, so sometimes it feels like the same thing.

I hope they check your bloodwork. My son has something common but a little screwy with his bloodwork where his red cells don't carry oxygen as well as they could, and he gets light headed from that.

Someone also told me you can have painless migraines. I know my lightheadedness comes from a variety of things together, And if you ever had neck surgery or problems with swollen glands and such, sometimes the bloodflow gets cut off a litle.

The MRI should tell alot. Though my TSH was almost normal,my antithyroid antibodies were dangerously high and I onlyhave half a thyroid functioning and lots of permanent nerve and brain damage. It also causes electrolyte prblems. The blood work is not be all end all sometimes. I sure hope that you findout soon what isgoing on and that you begin to feel better. I am praying for you.
Posted 10/6/2009 8:18 PM (GMT 0)
Hi everyone,

Here is a link to a site where I've posted several medical journal articles on the topic of gluten ataxia or other neurological issues caused by celiac disease:

http://spider.ipac.caltech.edu/staff/joanno/med_pubs/

There's one very interesting paper on how celiac can masquerade as SLE.

If I think it necessary, sometimes I print these out and take them with me to doctor's appts. :)

JoAnn
Posted 10/7/2009 12:58 AM (GMT 0)
Hi Marji, thank you for all the suggestions and for taking the time to respond to my post. I don't think it has anything to do with my meds, I haven't had a change in them for a while now. I don't check my BP a lot but when I do it's always low (98/68), which is normal for me. I also thought it may have something to do with my blood sugar (low or high) at first but kinda ruled that out along with dehydration because I try to eat a little something every couple of hours because I have had problems with low blood sugar. This feeling I am getting is different from being lightheaded or dizzy, I've experienced both of these, this is more like I'm on a rocking boat or like I'm floating.

Thank you for your prayers. I was hoping I would have the MRI scheduled by now but I haven't so here's hoping it will be soon and I also see my rheumy on Friday, maybe she has some ideas?!?!?
Posted 10/7/2009 10:24 PM (GMT 0)
Stacie...

How are you feeling? Any word for a MRI today? i sure hope you can get this figured out quick. I know its no fun and I also know the anxiety and fear you are probably feeling! Praying and Praying some more for ya!

Love ya girl!

Posted 10/8/2009 12:17 AM (GMT 0)
Hey Amy, I am about the same, I am so ready to feel better. The doctor's office called today while I was at work, I will call them tomorrow and schedule the MRI, I wonder how long I will have to wait, maybe not long?

How are you doing, are you feeling better? Thanks for the prayers, you are in mine as well! Love ya girl!!!
Posted 10/8/2009 2:26 AM (GMT 0)
Hi,

I have that same floating feeling almost as if my head is full of helium that you describe. I have always blamed it on the fatigue because it gets better after rest. It comes and goes but I noticed an improvement with taking Plaquenil. I am curious to know what your neurologist says, I am seeing one on Monday so maybe I will ask him about it. Good luck.

Posted 10/9/2009 4:41 AM (GMT 0)
Stacie,
It may be minears, vertigo, autoimmune ear problems. Hopefully not brain, though I have that and the "atrophy" from lack of oxygen and other causes. Even though your blood pressure is normally low and you are used to it, it may be diving even lower and there may be a small threshhold of what you can tolerate. Stll, the floating, sea sick almost feeling reminds me of Minears/vertigo. My ears arereally getting attacked bad. I started taking Lipoflavanoid, an over the counter supplement of mostly vitamines and it really fixed my ears up. In addition to the floating/almost drunk feeling (which my son got when his epilepsy meds reducd his sodium way toomuch and his BP was messed up--he drank gatorade to fix it) , I was having roaring, ringing and sore ears (inside) and plugged up ears though they are totally wax free and clean. It may be due to neck nerves.

The lipoflavanoids are a good supplement if youneed B vits and choline, an oft neglected supplement.

I hope you feel better, you might try a little gatorade or increaseing salt intake to see if it helps, if its diving BP, it can be quite dangerous. If you are on sodium/calcium channel blockrs and you have low bp, this can happen.

HOpe you feel better and your doc figures it out. Hope it isn't the brain, but something reversible. Know Im praying for you.
Posted 10/10/2009 2:12 AM (GMT 0)
Thank you Allison, my feeling doesn't go away after resting and it only happens when I'm walking. I hope to have my MRI next week, let us know what your neuro says. Take care

Marji, I hope it's not the brain either and rheumy thinks it's a good idea to go ahead and get the MRI. How did your doctor's determine it was your ears? Did you have to see an ENT? Lack of sodium makes sense, I like the idea of Gatorade, I will try that.

Thank you for the prayers! I will keep ya'll updated.
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