So...then...there I was... | Arthritis Information

trying to get out of bed and not succeeding. Flash came to assist and I could tell by the look on his face that something was not right

Made it to the bathroom and one look in the mirror told me what wasn't right: Bell's Palsy paid a nighttime visit and kissed me on the forehead.

I had a previously scheduled Dr. appointment, so...after a day-at-the-docs the verdict is severe B-12 deficiency with neurological complications/deficits without evidence of anemia. Seems the folic acid had been masking the deficit until the symptoms could no longer be occulted.

The consulting neurologist said that "some" of the facial paralysis will resolve, but he is not as hopeful about the flaccidity in my extremities and told me quite frankly that the cognitive aspects of the deficiency will, in all probability not resolve.

Have YOU had your B-12 levels checked recently??

Another wonderful day at the Sonoran Abode.

I bid each of you smooth roads, clear skies and comfort.

With COURAGE! Happ

Aww! That really sucks Happ!!

I hope that things start to look up for you, and this resolves itself quickly. if you need any specific advise please ask and i'll relay the questions back to my stepmother. HUGS! and i'll keep you in my thoughts

[QUOTE=arriscolwell] Are they starting you on the B-12 injections?[/QUOTE] Hi katie, yes: had one in the PCP's office and then, *LOL*, just for good measure another one in the neurologist's chamber of horrors. Also sublingual twice a day.

I will call "my" physical therapists first thing in the morning and set up a series of appointments with him IF, big IF, we can also set up a payment plan. If not, I have an acquaintance whose wife is a PT and maybe we can work out a barter.

Thanks for the encouragement.

Jesse, thank for the offer!

Happ, I am so sorry that you have this new problem! I hope they are giving you B-12 shots to hopefully get this reversed.

I'm so sorry you have to deal with this. I hope it reverses itself and you get back to normal real soon. Best wishes! you are in my thoughts and prayers.

Gentle hugs, Nini

Oh wow twice a day! Well I hope it will help. When they started Justin on it I read and read and read. I must say I read lots and lots of GOOD things about it. So hopefully that will be the case for you too. And ya know, if you can't get in with PT....I betcha between the gang on the board here we can dig you up some exercises of your own! We're good at scrounging the net! [QUOTE=arriscolwell] We're good at scrounging the net[/QUOTE] I am practicing the stretch Mrs. A found for you and your back. No problem, I can ass-u-me that position with panache. [QUOTE=Nini]Gentle hugs, Nini[/QUOTE]
Thank you, and I return those hugs ten times!Yeah, but can you get UP again????? That's where my problem was!!! oh one other thing, i know my stepmother has been doing acupuncture to relieve her symptoms of the lime (joint pain and fatigue) and she said she thought it also helped her face....somthing to consider. [QUOTE=arriscolwell] Yeah, but can you get UP again????? That's where my problem was!!! [/QUOTE]

Sure, no problem...send in the crane. (sung to the tune of Sondheim mourful "Send in the Clowns").

There ought to be Cranes,

To Lift Up My Rear. . .

Sorry to hear about more troubles Happ, but I'm hopeful that this problem can be quickly resolved with treatment and you will start feeling better very soon.

Sorry to hear it Happ. And here I was just thinking earlier today if you found out who sent you those flowers.

I hope they B-12 fixes you up and you recover in a timely manner.

Keep us posted.

Argh...it doesn't seem fair that one person should have to deal with so much. I hope you can work out that PT issue and that the shots help. You have prompted me to research B vitamins.

I am rooting for you, Happ!
Happ - Bell's Palsy is a curious affliction - hopefully it will resolve itself quickly and disappear. take care CathyBells palsy and low B-12 can be Lyme relates as well. Worth a lookHapp. I'm so sorry that you are going through all of this. Your in my
thoughts. Please keep us posted on your progress.

Happ, that's awful. I'm so sorry. Please let us know how you're doing with the B-12 shots. Hopefully there will be a real improvment in your condition.

And how good of you to remind us to get our B-12 checked. Thank you. Mine is OK but there may be others who haven't been checked in a while.

So sorry to hear of the new problems. I so hope the B-12 helps and quickly.

((((Happ))))

My blood work said my B12 was low and dr said I should take it, so I did for 8 weeks and then it was ok, so I quit because I hate taking more pills. Guess I better go back to taking them again. Vitamins always just seem so "why bother" to me, I better rethink my attitude.

Hope you palsy resolves itself quickly Happ.

Holy Cow! I had no idea a B-12 deficiency could cause Bells Palsy. Bless your heart; how scary that must be for you.

I have a B-12 deficiency. It was discovered in September on my first visit to a neruologist. I've been on B-12 injections ever since.

Deidre~It was my understanding that with a B-12 deficiency pills would not work because the body isn't absobing the B-12 correctly through digestion and it needed to go directly into the blood stream. If yours was cleared up with just taking Vitamins for 8 weeks maybe I misunderstood.

Happ~I'll keep you in my prayers Sweetie as you face yet another challenage.

Thanks for the kind words and encouragement. It means more than you can possibly know. This morning I have assumed the charming appearance of an aging Basset hound as the palsy has become bilateral. The neurologist assured Flash that THAT is not an indication of a progression of neurological deficit; however, he did stress that this development was going to necessitate close monitoring of my secondary Sjogren's Syndrome, and in fact, it was an achingly dry eye that awoke me about 2 AM.

That is going to be a great look for the holiday season! A Basset with blinders. *LOL* Too bad Halloween has come and gone, it would be a great party costume with a rhinestone collar and leash.

GoGo, knowing that anemia is always a concern in AI diseases I _thought_ I had done the research re: b vits and I _thought_ I was taking due precaution. SO, please share what you uncover. I was not aware that increased folic acid consumption as an adjunct to MTX could, and can! mask a B-12 deficiency.

My stamina is limited, thus my research skills are nearly non-existent, but there are some studies available online that make mention of folic acid masking B-12 deficiency...if only I had known...

Lymes disease is not endemic in the High Mountain Desert of Southeastern Arizona, USA, however, I have been tested, more than once, and at least once through the renown Palo Alto, California, USA reference lab, once more with a PCR (polymerase chain reaction) DNA assay. Each one has been negative.

So...then...I will be engaged in the darkened world of eye tape, satin eye mask, audio books, and the occasional cocktail of fish oil, flax seed oil, and sublingual B-12. I will not ask you to join me.

Be well, be wild, be wise. Agape, HappLovie,
So now I don't know what I'm looking for on the list of blood tests that I have done, that would tell me what my B12 levels are? Is it listed as B12 or something else, I could spend hours trying to figure this out on my own, but I'll ask here first. The last time I saw the dr she said my B12 was low and I should get some 500mg pills? Her nurse never called back and said the pills weren't working, I just assumed they were.

I don't know D~ The day I went to the neruologist they tested my blood before I left and the nurse called me at the office two hours later and informed me that I needed to start the injections right away.

I never saw the actual results and I honestly have only spoken to the nurse about it. I don't know how low mine actually was. I'm sure there are vast degrees of results.

I go to the neruo on Monday so I'll find out more and report back.

Please post any other research you guys find important during your search. I'm very interested in this subject.

When they said I had a B-12 dificiency I though "How bad can that actually be?" I thought it was rediculous that I was having to take the injections. What's happened to Happ only confirms that this can easily be very serious.

Hang in there Happ.

And my B12 is high, which is unusual, and no answers. Happ, I love your outlook on life - keep sharing it, we need you. CathySo...there I was...at a routine (is there really such a thing with AI!) follow up appointment decked-out in my oh-so-cool heavy, dark wrap around UVA/UVB blocking shades hiding the under-eye hang-over shadows but accentuating the basset hound cheeks and jowls.

With both sides of my mouth dropping like too old Christmas garland, I could win (hands down) a Nell sound-alike contest: although the staggers and lack of balance might be more akin to Bar Fly.

A friend from Hospice had dropped by Tuesday morning and blood so the results would be available for today's appointment. >>deep sigh<< my B-12 level remain "seriously low" and my sed rate won this week's trifecta. So...B-12 injections increased to three times a day and sublingual to TID (three times a day): Lyrica increased to 150 mg. TID, Methotrexate subq upped to 27.50mg/wk and Plaquenil to 400 BID (twice a day. There was some _talk_ about in-patient therapy, but I more or less refused that suggestion.

BUT, now I am home again, home again, jiggety-jog, sitting on the verandah, indulging myself, if not my liver, with a Guinness Stout (I am telling myself it is OK for today as it is filled with B-vits) and enjoying the 78 degree weather. Sometimes you just have to say, what the hey!

I send each of you my very best wishes for a comfortable day, a marvelous weekend, and the freedom to do just what you desire for the moment.

Con brio. Happ OMG, Happ, I have been wondering how you are doing. That is a lot to contend with (except the Guinness). I don't think I've ever even heard of someone being on 27.5mg MTX, except for cancer patients who take a lot more.

I had a friend with Bell's Palsey and it slowly resolved itself. Hopefully so will yours.

I hope you feel better soon, and please don't be a stranger!
(((((((Happ)))))))As the exception to the rule that seems to have been set in another topic, I tend to post less when I am not feeling well than when I am hale and hearty, but like that proverbial bad penny I do keep showing up...

Today's various and sundry physician appointments were, while not cause for celebrate, were encouraging. My B-12 level is still low but is no longer a flashing neon warning so hopefully the neuropathy and cognitive deficits will also begin to improve. Bilateral Bell's Palsy is essential unchanged, but that too will improve as my B-12 stabilizes.

I have been troubled with a coroneal ulceration from a combination of "dry eyes" and an inability to blink. For several days both eyes were bandaged 24X7. However, today the opthamologist said there was evidence of epithelial healing taking place, and although I have to remain in a darkened environment and tape my eyes when resting, he did say that using the computer with the brightness turned down was OK but not for more than thirty minutes in 24 hours.

I send each of you my very best wishes for a comfortable day, a marvelous weekend, and the freedom to do just what you desire for the moment.

Con brio, Happ

Happ, What an ordeal. Would you mind posting the Igenex Western Blot results? The bands. Lyme has been reported in Arizonia. Sometimes you need to be on antibiotics first before a Positive WB will show. Plus you are probably already on Immune suppresing drugs. I'll ck further about Arizonia area. 6t5 - I hadn't heard about needing to be on abx first to get a positive WB. My daughter is getting Igenex testing as we speak, but I've been expecting another negative, thinking it was just something her new dr. needed to rule out for himself. Interesting. Hey Happ, I have been wondering where you are. I'm glad to hear you are getting a bit better, even if it is happeneing really slowly. One thing these diseases teach us is patience! Many LLMD put people on 2 weeks Doxycycline the go off for 1 week and re test. The dieing bacteria cause a antibody reaction hence the Positive test. That said it is very important to look at any IND or + bands, The CDC criteria is from 1993 and obsolite. For instance the CDC rules out band 31. You could be +++ with this band but they will not count it. Why? Because that is what they made the Lymerex Vaccine from a few years ago. It's since been taken off the market since so many people got sick. Band 31 in Only Lyme specific. Crazy I know. They feel some people may have taken the vaccine from years ago and test positive because of band 31 ( and 30 ) The CDC is so behind the times. Probably because if they change criteria many will show positive and Insurance companies will have to pay. Happ I'm looking into Arizonia but there is a Lyme association there AZLDA. Peak at leaparizonia.comwhoops...It's www.leaparizona.com no i

Happ, I'm sorry you are having to deal with all of this - so much to contend with.... I, too have sjogren's. Do you take any meds for that or use a gel in your eyes at night?.

I do hope you feel better soon and this all resolves itself. Many hugs to you....

deb

Best wishes to you Happ. You have carried your burdens with such strength of character and grace. You are a remarkable person, and a wonderful asset to the board. [QUOTE=6t5frlane] Would you mind posting the Igenex Western Blot results? The bands. [/QUOTE]

Neurological Lyme Disease has not been much of a concern for either me or for my physicians. I have had both IgG Western blot, the IgM Western that were negative for B. burgdorferi exposure within the year: both done after a fourteen days pretest loading of doxycycline. I have also had negative urine and CSF Lyme Disease testing in the recent past that as non-reactive.

(I double checked the following with my PCP�s office just to be sure my memory was functional!) The only band that was reactive was that segment associated with immunogenic integral membrane lipoproteins: that reactivity was later determined to be a crossover from a sub-clinical e-coli UTI and responded to a course of antibiotic therapy. A repeat assay was then negative across all bands specific for Bb.

Lyme disease is not endemic within Arizona, although there are pockets of the disease in the Page/Lake Powell area: I have had no possible travel exposure for more than twenty-five years.

[QUOTE=6t5frlane]whoops...It's www.leaparizona.com no i[/QUOTE]

The total number of 58 reported cases in Arizona in the last 10 + years is, or at least might be, misleading. With few exceptions those reported cases had travel histories that took them to areas where Lyme Disease is prevalent.

More than one infectious disease physician in Arizona says there are less that fifteen "indigenous" cases. Who knows for sure? [QUOTE=Gimpy-a-gogo]Hey Happ, I have been wondering where you are. I'm glad to hear you are getting a bit better, even if it is happeneing really slowly. One thing these diseases teach us is patience! [/QUOTE]

Patience IS a life's lesson that keeps popping back up. Obviously, I have not learned that lesson yet! OK! So...life! grant me patience: right now! *LOL*

[QUOTE=owiemom]...Do you take any meds for that or use a gel in your eyes at night?.[/QUOTE]

Deb, thank you for your good wishes: those thoughts are the best food and drink one can be offered.

Yes, I have gels, salves, unguents, drops, moisture retaining eyewear, nighttime masks, and various other implements, inserts, additions, and add-ons. Each help, in their own way, but, alas, there just isn't a magic bullet, is there?! Darn... ...
[QUOTE=Hillhoney]Best wishes to you Happ. You have carried your burdens with such strength of character and grace. You are a remarkable person, and a wonderful asset to the board.[/QUOTE]

Oh...my...thank you from the deepest center of my heart. That means more than can be expressed.

I hope your current journey is tranquil. Please know that you and your dear Mother are in my thoughts every day.

Peace unto you and yours. Agape, Happ

Dang woman. You should have just registered as "Happy" Cause it seems no matter what, there you are!

*hugs*

Happ, thank you so much for remembering mother. That means so much! We can use all the good thoughts you can share!

Karen

Oh Happ I had no clue because I have been gone for so long that you are having these troubles!!! BIG HUGE GENTLE HUGS to you!!! Oh sweetie it is from the bottom of my heart that I wish you well and that you get well quickly. You are such a wonderful person and such a wonderful asset to this board!! I am glad to read that things are on the upswing for you regarding the B12 deficiency.

Yes, having an auto immune disease or sometimes as is the case for many of us...several auto immune diseases...does teach us patience and to look at the world thru very different eyes. I love how you have kept your sense of humor. I know that without my sense of humor, I would be curled up in a little ball in some corner just drooling away. This also makes us appreciate the smaller things in life and not to take for granted every single day that we have on this earth.

Oh sweetie, no matter whether you had hanging jowls or not...we all would still love you and appreciate the person that you are.

Awww that is terrible.

I am sending out best wishes, hugs, prayers and good thoughts all your way. I sure hope it helps.