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Just a quick note to say hi!
You deserve a big bear hug!
You're in my thoughts all the time, but especially today.
Thank you for everything!
Welcome to our community!
You are in my thoughts and prayers.
Hope you feel better soon!
Congratulations! Time for a celebration...
Happy Birthday!
867582 tn?1311627397
04/11
Torikat,

About your spaciness - I have it too!!  Lyme can cause that.  Lyme can go into Alzheimer!!!  Please, please, go to a Lyme-literate doctor.  Try the antibiotic treatment!!  Also IV vitamin C can help.  Attend your local Lyme support meetings.  You'll learn lots.  If you try the Lyme treatment and nothing changes, then you'll have ruled out Lyme. But if you have Lyme and don't treat it, you'll slowly die!!!  Contact your local Lyme group TODAY!!!  Please, do it!  I care about you!!  Do it!!!

WAF
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867582 tn?1311627397
03/11
Hi, Torikat,

I got some more lupus tests done yesterday.  I was only in "the cooker" for 4 minutes this time - after tanning felt like throwing up.  While tanning, had paresthesias, thumb twitching, and later a facial rash.  Hope the lupus tests are positive!  Would rather have lupus than ALS or Lyme.  Then I'd know to just stay out of the UV rays.  I have CPAP (mine is like a BiPAP) for sleep apnea.  My low sats were recorded WHILE I was using my nighttime breathing support.  Going down the tubes!  Hope you're making some progress!  More later.
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867582 tn?1311627397
02/11
Hey, Torikat!  I can't believe what you have had to endure!  Continuing numbness and no response from neuro.  Hello??? Anyone home in that neuro's brain??  I'm also having numbness, but mainly at night in arms and hands.  My ANA was negative (but didn't get UVB that day due to my "flare") but my sed rate was high for a change.  Had pulse ox done while using CPAP at night - O2 sats were in the 70s and 80s - never 90s.  Sooooo, now I'm on oxygen at night with my CPAP.  Still think I have ALS.  To get more info on local docs and sym;ptoms, you should be attending your local support groups in Lupus, MS, and Lyme - yes, Lyme.  It can mimick many neuro conditions and it is very widespread!  Lyme can cause numbness!  Lyme, untreated, kills.  See the DVD "Under Our Skin" for better understanding.
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867582 tn?1311627397
02/11
Torikat,

I hope your visit with your neuro went well today.  You have so many progressing symptoms!!  I read that foot drop in lupus can sometimes be reversed with steroids!!  I tanned yesterday for less time and tolerated it better.  But still had symptoms while tanning - this time felt numbness in my cheeks while tanning.  Weird! Now my right foot is also feeling weaker.  My forearm muscle mass loss is more prominent - my bones are really sticking out!  No MD seems to care about it!  Can we please get some answers?????

Hugs from WAF!
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867582 tn?1311627397
02/11
Torikat,

My son begged me to stop the tanning, but I'm going to just do it once or twice more and then get my ANA tested again, hoping that the exposure to light might cause a better ANA result.  I don't have another appointment with a rheumy.  My PCP ordered the ANA.  If it comes back positive, then I'll make an appointment with a rheumy.  Those tests mean so much to rheumys  - they ignore our symptoms in favor of the test results. That's why I'm putting it all on the line by continuing to tan despite worsening symptoms so I can give them the precious ANA test results that they look for!!! Can't seem to go forward testing without a positive ANA!!!!!    Hugs to you!!
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867582 tn?1311627397
02/11
Torikat,    I'm sorry to hear you have foot drop now in your biopsied left leg!!  I don't have that yet!  Understand the need to be job-free!!  Exhaustion!!  I'm pushing the envelope regarding ruling in or out SLE!  The past 2 times I tanned indoors I have exposed my face - getting a mini-rash over nose and cheeks.  Will be interesting to see what more UVB exposure to the face brings.  I tanned yesterday for 8 minutes (my longest time ever) and last night I nearly faded out - had the most extreme weakness and dizziness ever while sleeping.  Woke up to a 20-beat-run of tachycardia.  Scary!  Got a home pulse ox study back - O2 sats in 70s and 80s most of time!! No wonder feel I'm fading out! Hope your neuro backs you!!  Hugs lupus sister!
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867582 tn?1311627397
02/11
Hope you feel better soon!

One more thing:  Lupus can cause hoarseness that comes and goes - something I have been dealing with for a long time!!  It seems like it can cause just about any symptom that any other neuro condition can cause!  Sheesh!  But I say "NO" to a kidney biopsy, thank you.  Not going to risk damaging a kidney in addition to having an undiagnosed neuro condition.  The leg where I had the muscle biopsy is still having sequelae from that!
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867582 tn?1311627397
02/11
Torikat:  You deserve a big bear hug!

Last summer at the cool Oregon beach, I slathered tons of sunscreen on my face, but after 4 days of periodically going on the beach, the skin on my face was a mess!  Can't describe it!  Like thick red blotches on it - embarrassing! I could not have tolerated one more day of sun!!
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867582 tn?1311627397
02/11
Torikat,   My heart goes out to you - all you're going through and no definitive answer, but is likely lupus.  I met someone in our area who had to learn she had lupus the hard way:  She suddenly crashed: Spent a month in the ICU in a coma - they biopsied her kidney then and found it was lupus.  Incidentally, all her lupus tests done prior to the kidney biopsy had been negative.  They say you can have lupus for years and after ruling everything else out, they decide its lupus.  I got a good book on it - "The Lupus Book" by Daniel Wallace. Looked in my mouth and, sure enough, I had an ulcer-like sore there I didn't even know I had.  Have been tanning with a shield over my face but am going to start tanning without the shield to see if any rash develops.
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867582 tn?1311627397
01/11
Torikat,  Continuing my earlier note to you, I've read that ANA is not the best test for lupus even though it is used a lot in lupus diagnosing.  What you need, to help put your mind at rest about your diagnosis, is an anti-nDNA test.  Now, that test IS specific to lupus.  That is THE test for you to have done.  Another one, less important, is the "anti-Sm antibody" test. If you tested negative to that one, it would not mean you did not have lupus, but if you tested positive to that one, it would mean that you did have lupus (i.e. many lupus patients do not have anti-Sm antibodies, but such antibodies are rarely found in people who do not have lupus).  My symptoms seem more MS-y than Lupus-y.  Only my odd reaction to indoor tanning and my unexplained joint pains years ago make me wonder.
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867582 tn?1311627397
01/11
Hey Torikat,

My thumb only twitches like that with UV rays.  It wasn't tingling - it was twitching!  I'll see if it does it again today when I tan. Other parts of my body tingle with UV rays and it's like I'm feeling internal sparks in my back and legs when I tan.  Weird. I want another ANA test - this time after exposure to UV for a change!  Will continue on another note.  Hugs,
WAF
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867582 tn?1311627397
01/11
Torikat,

Last time I tanned, my right thumb started twitching soon after the UV light came on - kind of like I was having a nerve conduction study done, only not quite as violent a twitch as that. It kept twitching periodically thoughout the 6-minute session and stopped afterward.  I'm a square peg the MDs keep trying to fit into a round hole!!  
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867582 tn?1311627397
01/11
One more thing, I partially read the book "Cure Unknown" about Lyme disease, and I learned that Lyme can also be demyelinating!  Often with Lyme the demyelination can show up in the peripheral nerves of arms/legs.  If you have not yet been checked out by a "Lyme-literate" doctor, you have not really been ruled out for Lyme. It can present in so many ways - neuro, fatigue etc.  Traditional lab tests for Lyme are very unreliable.  Traditional MDs have a poor track record of diagnosing Lyme - you need a "Lyme-literate" MD or ND.  Check with your local Lyme support group for more info on that.
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867582 tn?1311627397
01/11
Hi Torikat!!  Glad to hear from you and hear how you got your answer.  My rheumy said I couldn't have an autoimmune disease because my ANA was low (but I was avoiding UV rays at the time). I saw on the lupus site that you should be exposed to UV/sun before getting an ANA done.  You asked why I am continuing to tan even though I have reactions:  First, to build up my D in a more natural way (read the book "The UV Advantage").  Secondly, because I want an answer darn it!!  It don't care what it takes - if it puts me into a coma or what - I need an answer!!  I'm just going to ignore my body's reactions to the light and go for an answer!!  The next ANA I have done will be after exposure to a LOT of UV rays!!  And, yes, I have noticed a rash on my leg after tanning sometimes.  

Hugs from WAF!
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867582 tn?1311627397
01/11
Torikat:  Wow - you got a diagnosis - Lupus??  I didn't know much about lupus, only that my negative ANA ruled it out for me in my doc's mind (actually I hear ANA is a poor test for lupus since results can change depending on the amount of sunlight you get). From what I've recently read about lupus, I think lupus sure could be what you have.  Lupus can be really severe and with multiple bizarre presentations.  It fits you!!  What tests were used to get your diagnosis and who diagnosed you and where?  I've been having such weird reactions to my brief indoor tanning, suspect lupus for me too:  Numbness in right arm during tanning session, tingling in different parts of body, and yesterday twitching of right thumb while tanning.  Not your usual tanning bed reactions.  Congrats to you!  Hugs!
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867582 tn?1311627397
01/11
Torikat,   I've not had time to be on the MS site bigtime for a while since now I am investigation the possibility of lupus and/or lyme disease.  Have you been checked out for those?  Lyme tests are notoriously inaccurate.  So is our MDs ways of ruling out lupus (negative ANA).  I have learned that the ANA is a poor test that can be affected by the amount of sunshine we are exposed to (I avoid the sun).  Lately, my worsening symptoms after indoor tanning are making me reconsider lupus. Last night while sleeping I felt like I literally fell off a cliff physically.  Something significant happened.  I'm where you are regarding my job and worsening symptoms.  One day we won't have to decide - we won't be able to continue working - with or without diagnosis.  Now I have to nap mid-shift.

Hugs!
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867582 tn?1311627397
10/10
I feel so bad about what you're going through!!  You're worse off than I am!!  By "new" doctor, did you mean the older man who promised he'd find the answer for you (who put you in the hospital for 4 days) or do you mean that you have left him and am now going to an entirely new MD?  How could Lou Gehrig have been diagnosed with ALS in 6 days many decades ago and today, with all our hotsey-totsey diagnostic tools, you and I can't get our diagnoses after 6 YEARS of inquiry?  How would you feel about going abroad for an answer?  I really don't think American medicine is ever going to provide an honest and accurate answer to our afflictions.  
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867582 tn?1311627397
10/10
I forgot to say, their theory for having the muscle biopsy is to see if it is IBM (inclusion body myositis) or some other odd disease.  Actually it could differentiate between a myopathy (IBM) or a neuropathy (like ALS).

Hugs to you from WAF
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867582 tn?1311627397
10/10
You deserve a big bear hug!  Torikat, I'm sorry to hear about your 4 days in the hospital with still no answer.  You know something's up when you realize it only took Lou Gehrig 6 days of testing for them to diagnose him with ALS many years ago. And back then they had less medical knowledge/sophistication than we have today.  But there was more honesty then and less greed. The name of the game today in our country seems to be selling us a lot of tests and delaying diagnosis indefinitely. It is a very cruel thing indeed.  I had my muscle biopsy a few days ago, was very sick afterward - throwing up etc. either from the MAC anesthesia or the pain killer.  Back to normal today. Probably won't show anything.  Will keep you posted and, please, keep me posted about your situation!!  Hugs to you!
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867582 tn?1311627397
09/10
Torikat:  One more thing:  Did you go to Johns-Hopkins for yourself or for your husband?  If for you, was it many years ago, say when your symptoms first started?  If so, maybe they didn't have enough to go on then - but now that your symptoms have considerably worsened, something might show up.  Take someone with you - your husband if he is supportive.  It might help get their attention if you go with someone present in the examining room. I suspect that Johns-Hopkins is also under the current national neuro-diagnosis-supression campaign, but, of course, they must give some diagnoses (just not all that they could or should give) so maybe you'll be one of the lucky ones who gets a diagnosis because your symptoms are getting so bad.  Hugs to you!!   Keep in touch!!
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867582 tn?1311627397
09/10
Torikat,   I'm sorry it has been going on that long for you - it has been that long for me too.  It simply should not take anywhere near 6 years or more to get a neuro diagnosis.  It never used to be that way.  All of the sudden it IS that way all across our country.  That is why I have my theory about current governmental influence on the medical profession. I recently became aware that our govt tried to force a Catholic hospital to perform abortions and when the hospital refused, our govt. pulled all funding.   I do believe that is what is going on here in the neurologic arena.  
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867582 tn?1311627397
09/10
Torikat,  You could wait and see how that new older doctor you like proceeds -but so far he has only repeated tests already done.  If he doesn't show you some real results soon,you should go to Johns-Hopkins.  Your symptoms are moving fast and you don't have time for stalling tactics or medical dallying.
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867582 tn?1311627397
09/10
Torikat32,

I feel so bad about what you are going through. You have serious symptoms that should not be ignored!!!  I have also heard the words you describe from MDs I have seen and it is sheer frustration!!  They don't care enough.  

Rhode Island, eh?  Anyway, you're close to Johns-Hopkins - right?  Please go to Johns-Hopkins to be evaluated and take a family member or friend with you (I have found that you get farther with someone else present).  One man, who also was also getting nowhere with his MDs, went to Johns Hopkins where he finally got his ALS diagnosis.  He took his wife (her tears there brought results for him). If it's ALS you need to know!  I do know that with ALS, symptoms do often get way worse after a muscle biopsy just as yours have.  Please go!  You need to know!!  
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