unsteady while walking and other stuff

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jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 9/26/2009 6:40 PM (GMT -7)   
Yes I am back for more answers, so many weird things going on with me lately eyes smhair


Does anyone feel unsteady while walking? This just started about a month or so ago. I gets worse when I'm walking and have to turn around suddenly. My ears are ok, no infection...... not sure what could cause this.

I also have had 3 infections on 3 different fingers, on the side of my finger nail, again I've never had this kind of problem until recently.

I called my eye doctor about the vision disturbance I had, he said since it was in both eyes it's my brain. My PCP said right the opposite (UGH) so I will be talking to my rheumy about it in 2 weeks.

Any thoughts? I pray each of you are doing well and pain free! Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


Butterflake
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Date Joined Jun 2006
Total Posts : 1551
   Posted 9/27/2009 8:36 AM (GMT -7)   

Hi Stacie. I'm sorry you've been hit with more problems. I have these problems too. My walking is so unsteady that I have frequent falls. That's why I must use a cane or rolling walker. Just a few months ago I had a neuro workup- MRIs, EEG, neuro-psych exam and anti-phospholipid ab tests while I was flaring. Nothing pathological showed up so the neurologist said it must be the lupus.

I also get infected, ingrown fingernails and my thumbs split. Rheumy said it's my Sjogrens. I was given rx antibiotic cream for when I get them. I do some bathroom surgery and push the skin back from the nail then use the rx and keep covered with bandaids. I think you're the first lupie I know of that has this besides me. Yep the strange is ordinary and nothin is normal.

As for my vision, it's been good lately, but there was a time I couldn't drive. I hope your rheumy can give you some good advice! Love ya, Donna


Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Rx: Cellcept, plaquenil, prednisone, celebrex, lisionpril, actos, lipitor, nexeum, prozac, wellbutrin, ambien, cholestryramine, lomotil PRN: xanax, neurontin, tylenol arthritis, flexeril, nasonex, phenegren, vitamins, Acupuncture.  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 
 


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 9/27/2009 9:40 AM (GMT -7)   
Hi Stacie,
 
I have a lot of issues with my balance and walking too.  I think it's pretty common especially if your Lupus is active.  I'm glad Donna had some comments on the finger infections.  I can't say I've ever experienced that. Sounds painful! I've been told that my visual disturbances are brain related if it's in both eyes at the same time.  If it's just one eye, it's in the eye itself.  That's what my neurologist told me.  It's a real pain when you get conflicting opinions from your doctors isn't it? 
 
It sounds like your Lupus might be more active now with all these new symptoms?  ARe you seeing your rheumy anytime soon?
 
I'll be praying for you too Stacie!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians 4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 9/27/2009 10:29 AM (GMT -7)   
Thank you Donna and Ginny ((((hugs))),

I guess it's an unsteady feeling that I get. It happens when I walk or if I move my head too quickly, in fact it happened in church today. I noticed when I lift my head up and open my eyes (from bowing), something weird happens, all of this is so hard to explain, I hope I am making some sense.

I never thought of Sjogrens causing the finger infection, I thought it was because of the meds I take (Mtx & Imuran). I don't think it's a ingrown nail, it's on the side where the nail meets the skin. I've been using Neosporin on it and keep it covered with a bandaid too. It is so painful too, I never thought I could feel so much pain from just a finger nono

I really need to find another PCP. Again she was more interested in how I was dx with lupus and if I lost any weight????? Ginny my eye doctor told me the same thing your neuro did so if it happens again I will probably just go see a Neurologist and be done with it, that's what my rheumy suggested to begin with. It hasn't happened again and I pray it doesn't but it does make me worry a little bit as I have never had any problems with my eyes. Never had blurry vision, nothing!

I have been absolutely exhausted lately. I am back to spending my Saturday's laying around and not doing much. I haven't been like this in a long time and I don't like it! nono Thankfully I see my rheumy on Oct 9th! I have a list of things to tell her about.

Thank you both for the prayers and support! Love ya both
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 9/27/2009 10:55 AM (GMT -7)   

Hi Stacie - so sorry you've been dealing with so much at once.  It's always worse when the explanation is elusive.  I did have exactly  the kind of infections on the fingernail that you're talking about.   It's when my pcp sent me to the rheumatologist.  I actually saw him about it because it had happened a couple of times, and then I noticed the fingernails/fingers actually looked a little different after the infection had cleared.  He said it could be Sjogren's and sent me to the rheumy.  Of course it was all gone by the time I saw her, but she did and still does suspect Sjogren's, however, I'm seronegative for it. 

What I did to deal with the infection was soak the sore finger in epsom salts and warm water a couple times a day.  Really pulled the infection out quickly and eased the soreness.  And I'm not sure about how this relates to what you're dealing with - but I have some weird "head/eye" things from time to time.  I've always blamed my fibro when my eyes sort of feel "jerky" for a second or two.  It really is hard to explain these things!  Also - I have a little vertigo from time to time - always shortlived - only lasts 24-36 hours and it's not severe, but it makes me feel "lurchy" or unbalanced - especially when turning the body or the head.  I won't drive when it happens, but I can get around the house okay.  I couldn't tell from your post whether it was actual muscle weakness or more dizziness.   My mother was just diagnosed with Meniere's Disease.  She described her symptoms as "not dizziness really - just feel unsteady when walking  and discombobulated"  and the symptoms were increased with head movement and lying down.   The first ENT she saw didn't run all the tests and missed the diagnosis.   At any rate - I hope you can get some answers soon and will start feeling better!

((hugs))  

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 9/27/2009 12:06 PM (GMT -7)   
Thank you Lucy,

Well I do have Sjogrens but never thought it would affect my fingers??? It must be flaring right now, I've had 3 of these infections on 3 different fingers over the last several months. Thank you for the suggestion of Epson salt. I will try that.

I don't have muscle weakness right now and my head doesn't feel dizzy... I like the description of discombobulated, it's just really weird. Thanks again Lucy, take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/27/2009 12:53 PM (GMT -7)   
Hi,

This is just a thought I wanted to throw out there; some information that might be important to someone on this forum.....I'm not a doctor and cannot give medical advice. But please keep in mind that it's possible to have more than one autoimmune disease....in fact, if you have one, you're far more likely to develop more of them! I have been diagnosed with 5 AI disorders, plus asthma and fibromyalgia. My lupus diagnosis is pending, but my rheumatologist has started me on Plaquenil because he's fairly certain I have SLE.

One of my many autoimmune diseases is celiac disease (triggered by a reaction to gluten in the diet), and I too have had problems being unsteady while walking, vertigo, etc. I've attributed it to celiac, and my neurologist agreed, because there is something called celiac ataxia; celiac disease causes lots of neurological problems in some people, including blurry vision, peripheral neuropathy, and so on.

I know that if I accidentally eat something with gluten (a protein found in wheat, barley, rye) all of my neuro symptoms come back.

Recent research indicates that celiac disease can actually lead to other autoimmune diseases....it can be the "mother" of other AI disorders. The mechanism is fairly simple; a cytokine called zonulin is overproduced during active celiac disease. Zonulin regulates the permeability of the intestinal wall; if there's too much zonulin it actually makes the intestines "leak". This causes things to end up in the bloodstream that don't belong there, such as allergens like gluten.

The foreign substances can cause the immune system to go into high gear, frantically manufacturing all sorts of antibodies to fight the invaders. Unfortunately, it can become "confused" and begin to attack your organs....and voila! you have another autoimmune disease. The explanation at the following link is so much better than mine:

http://www.umm.edu/news/releases/zonulin.htm

Many medical researchers advise that people with lupus, Hashimoto's thyroiditis, Graves disease, rheumatoid arthritis, and many other AI diseases should be tested for celiac disease too, on the basis of this research and the association of these diseases with celiac that have been noted in many studies.

Have any of you ever been told you have IBS? That's what I was told....then I was diagnosed with celiac disease 30 years later. Apparently, if I had been on the gluten free diet decades earlier, I might not have rheumatoid arthritis, Hashimoto's thyroiditis, psoriasis, autoimmune hepatitis, and possible SLE today.

Anyway, please pardon me for being so verbose.....I just wanted to let people on this forum know about the zonulin research and the possible connection between celiac disease and lupus.

I hope that you all feel better soon!
JoAnn

P.S. My husband has severe palmoplantar psoriasis, and has the finger cracks that you mentioned. It's so bad that during a flare he can hardly use his hands because of the pain. Psoriasis is another autoimmune disorder.
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 9/27/2009 2:12 PM (GMT -7)   
Hi JoAnn,

You will see in my signature I have celiac disease, dx in Sept 2003, 1 1/2 years before my lupus dx. I am on a strict gluten free diet, no cheating for me as my GI symptoms were so painful. I lost 40 lbs in 2 months and suffered for over a year before my dx. I don't think this is my problem at all but I appreciate your post as most people don't realize there can be a connection between celiac and lupus. Another thing people don't realize is, lupus itself can attack your GI tract, it does mine. I continued to have GI symptoms after going gluten free, don't get me wrong I did improve but I still wasn't 100%, it was in May 05 that my rheumy put it all together and put me on Imuran and I am pretty much symptom free as long as I'm not in a flare.

Thank you for taking the time to respond to my post.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/27/2009 2:32 PM (GMT -7)   
Hi Stacie,

Yes, I noticed that you were already dx with celiac. Sorry to hear that! I know how awful it can be! :(

I'm sure that lupus can also cause neuro symptoms, but as you mentioned, most people don't know that celiac disease and lupus are associated, so just wanted to post something about that....just something to think about! :)

I'm still experiencing GI symptoms to, and have decided to go completely grain free to see if that helps. I've heard from fellow celiacs following the Specific Carbohydrate Diet that it can really make a difference.

Take care and feel better soon!!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.

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