OK. I need help...

[Momzilla]

Hey, everybody!  As you know, I don't have a diagnosis of any kind.  I have been posting on this forum since April, I believe.  Although my docs aren't sure what's going on with me, I have severe muscle cramps and tightness ALL over.  It's driving me crazy!

My neuro has observed increased muscle tone in all four limbs, so I know I'm not making it up, at least.  He just doesn't know the cause yet.  So my question is this~~

What do I do???

I know you all have given me your remedies before.  I need them again, please!  I'm in so much pain!  My jaw hurts, my toes are sticking out every which way, my neck is as hard as a rock!  My legs are the same as always -- like a gerbil is climbing around under my skin.  I'm naming him Goober.

I just sent my hubby to the store for tonic water.  Any other suggestions?

Goober's Mom*

[Momzilla]

Hi, Tory~

I am glad that you are improving.  It sounds like the medications you take are working well for you.  I'm glad.  Good luck with the ON.  And the sweating!  Oy!  Let us know how the MRIs go.  I hope you continue to do well.

Zilla*

Penn~

Hey!  Yes, I am doing better and better, just at night I find my toes are revolting.  Wait ~ that didn't come out quite right.  My toes cramp up at night and I have to massage them, in order for them to be in a neat and orderly row, as they were meant to be.  It feels like I've got a knife in the back of my mid-calf all the time, but I'm getting used to that.  And with all the paperwork I have suddenly at work, my right hand is pretty crampy, but it's nothing like when I posted the thread.  The tonic and magnesium and glass of wine are helping.

Next Tuesday I have a 'growth stimulating study' scheduled.  I am not sure why.  My endo and neuro think it may be a hormone thing creating CFS, like my neuro has, although my first round of blood work turned out to be normal. The prro endo sounded SO disappointed.

The good thing is, the endo is suspecting MS in the back of his mind, he said, so I think he may back me up for MS testing with my neuro if the growth stim study turns up normal, too.  He and my neuro are good buddies.  I really have not had MS testing aside from MRIs, which of course, were, normal.  So, we'll see....

Hope you are well, and get your LP results soon....Hang in there, organs intact!

Zilla*

[Momzilla]

Hi, Vera!

I'm so gla to hear from you!  Something happened to my computer and I lost my old e-mail program, and also your email to me.  Thank you for writing!  

Yes, I am doing better, thanks.  I hope that Kenneth is hanging in there.  My boys still pray for him and ask about him.  Have you planned your trip?  The snow?  I would love to hear your plans.

Thanks again for writing.  Take care!

Zilla*

[pennst8r]

How ARE you doing? Still getting better? Are any more tests scheduled? Thinking of you

Penn

[tory2457]

yes, night sweats are very common in LD and the Tick-Borne Illnesses. I read about men with MS and ladies who have night sweats...Doctors say the only thing that makes a man "sweat" is Babesia,,Bartonella, LD. It makes me wonder,,especially wonder that my symptoms are the same as the symptoms I had when I was injecting Copaxone.

Maybe someday all of this will be explained.

My ON hasn't changed,,so no, I don't have any issues. Actually, my lesions have improved,,,and no new ones in over a year. I'll be getting new MRI's in the next few months.

My brain fog comes and goes too. I'm on Plaquenil, Clarithromycin and Minocycline at the  moment,,and I'm seeing great improvement.

Best to you,
tory

[vera from Hong Kong]

I am sorry to hear about your pain. Since I cannot login here for over 3 weeks, first, i lost my password and wait for a few days to be here. When i get the password, everytime i enter here, the pop up says the page cannot be found.

I hope that your situation would be improved.
Vera

[Momzilla]

Amen, Sista!

Zilla*

[Momzilla]

Thanks, Tory!

I didn't know you had ON.  Are you in pain now with it?  I hope you feel well.  Thanks for the information.  

Are night sweats common with Lyme?  How dreadful!  That must ruin your sleep.

My brainfog at the moment is very much improved, too.  I did neuropsych testing, and I felt it went very well.  (But if it didn't--mabe I wouldn't know, right?  Ha ha!)

Keep on truckin'!

Zilla*

[tory2457]

Glad to hear you're remaining optomistic.

Here's a link that might be helpful:
http://cpmcnet.columbia.edu/dept/nyspi/flatp/brainimg.html

I'm progressing well, just got a change in protocol,,,and liking that my body reacts to this combo. Night sweats have increased again,,,but my brain fog is better.

Had a visual field exam and the dr asked me about my optic neuritis.. Said everything looks normal, but have to go back in January because of the ON.

I'll keep my fingers crossed for a diagnosis for you.

tory

[uk2]

Chris,

just to say Joyce Meyer rocks i joined her parnership ages ago she really is a real role model for women and tells how it is lol

Hope your well

Samantha

[Momzilla]

Hi, Ida~


Yes, the "Man" is taking good care of me, as always.  Thanks for your note.  The Bible is a wonderful way for God to come to you, as you know through the verses you're familiar with.  Without 'religion.'  I would be lost without mine!  It's my road map!  My owner's manual!  

Thanks so much again for your thoughts and prayers.  They mean so much!  I'll get to my diagnosis eventually.  In the meantime, I'll try monkeying around with the bananas, like you and Millerman...

WOW!  18!  I'll work my way up slowly....  Take care and have a wonderful day!

Zilla*

[Momzilla]

Hi, Tory!  Good to hear from you.  Actually, I had a PET scan done, and I'm pretty sure that ruled out Lyme.  My neurologist said he was not looking for Lyme, and they don't use PET imaging to diagnose Lyme, but that my images do not indicate a picture of a "Lyme case" at all.   We did talk about it.

My endo is thinking MS in the back of his mind, he says, and I haven't had any evoked potentials or anything like that.  Just MRIs, which have come back, of course....normal.  So, I'm hoping the endo will convinve my neurologist to do MS testing to rule that out once and for all.  LP for MS protocol and all that....

Thanks for writing...Hope you are well!

Zilla*

[tory2457]

Hi there Zilla,

So sorry to hear your still not diagnosed, and still feeling yucky.
I've agree you should try giving all kinds of docs and different remedies at try-until you find answers.

but, have you considered making an appt with a lyme specialist? Your symptoms sure sound like it could be a Tick-Borne Illness. Especially when your tests come back negative.

Much more that lyme at hand....Babesiosis, Bartonella, Mycoplasma  that could be what's wrong.

As much as you turn away from investigating this disease, please understand how difficult it is for me to ignore  your posts stating they can't find a diagnosis for you and that your testing is "normal".

in the lyme community many had the same complaint--all test results were negative and all kinds of specialist couldn't come up with a diagnosis...

Heck Polly Murray faced that very thing for years...(She was instramental in bringing LD out in the open,,,she lived in Lyme,CT.)

Wishing you the best,
tory

[Idab]

Hi Zilla - I have read through each and every post here and yes I know I am a day or so late in responding - but you are always on my mind, as essdipity says - how can you ever be forgotten, when you ALWAYS have a comforting word for EVERYONE on this forum, together with granny and others.

Firstly, you know "who's the man" and he will get you through your pain.  Just echoing Carol's wonderful words "Corinthians 12:9  And he said unto me,  My grace is sufficient for thee:  for my strength is made perfect in weakness" I myself have never read the bible, but the few versus I have heard are lifesome.

Secondly, Millerman's suggestions on bananas is amazing - I could never understand why I can eat approx 10 - 15 bananas in one session - my family and husband now know - when I visit (don't offer me just one banana, make sure you have the whole bunch ready for me).  I love bananas and do believe strongly that they have helped with my muscle pain..   When I was pregnant with my son at the age of 26, I ate 18 bananas in one go and felt wonderful.  I think I should enter into the Guinness Book of Records (if they have a category for this)! I am now 37 and still eating as many as I can.

Lastly, but never the end - with all the support and prayers you have here - Life can only get better and will only get better for you - our very dear friend.

Take Care, always
IDA

[Momzilla]

Thanks everybody for all your great ideas and well wishes and prayers.  You guys are the best!

I AM feeling better.  I keep a bottle of diet tonic water with me, have a stash in the fridge at work, too!  My work situation is pretty bad, so I wonder if they think I'm taking a nip on my lunch break!  A little Vodka Tonic with my salad!

I got the magnesium, too, and that seems to be doing the trick.  That, and taking a glass of red wine at night a couple of hours before bed.  I do get wicked weird toe cramps, still, but it's manageable, and I see the endo on Tuesday.  I will talk to him about MS.  He said it was in the back of his mind, and now that my dozen tubes of blood turned out to be normal, and NOT hypothalamic dysfunction, I think he'll talk to my neuro about MS testing.

Wish me luck!  And thanks for all your help!

And Michele -- get my name right or you're out of the club!  Just kidding!  You should hear what my kids call me!!!!

Zilla*

[needanswers54]

Gosh, you must be at your wits end!  These spasms can just keep you awake and bring you to tears.  Everyone gave you some great ideas.  Meds can certainly help.  Just be sure to ask the pharmacists about combinations and dosages as things can be very complex.  This may sound strange, but when I had them earlier in the year to the point I just could not get comfortable or even sleep I did the skelaxin or tizanidine with valium or strong pain meds like vicodin.  At one point nothing would stop the pain.  I took the stronger pains meds so that I could forego my migraine meds and take some cymbalta.  They give that for fibromyalgia sometimes.  It really did the trick.  Then I went back off of it after the spasms stopped.  They had gone on for weeks without relief and that finally did the trick.  However, you cannot take it with other certain drugs (i.e., possibly
triptans and possibly some anti-depressants, etc.) because of a serious serious side-effect that can develop.  Be sure to check with your pharmacist about the combination of all your meds with cymbalta as reactions such as seratonin-syndrome can be fatal.  But, the cymbalta REALLY relieved my spasms.  Do not know if this helped; but it was the only additional thing I could think of in addition to the above at present.  Also, I do not think it is advisable if you are prone to mania/bipolar disorder.  But, again, ask the pharmacists and your doctor.  Some people think that using oxygen helps.  But, I have never tried it.  

Hope you get some relief SOON!

[Michela11]

Many apologies about mis-spelling your name .... :(

[Michela11]

I second Craig's recommendation of relexology if you can find someone and can get there. It's not hard to try at home, and with pain everywhere it could be some relief now.

You could either 1. do it yourself or 2. get a friend to gently press points in your feet and hands. At this point, I think gentle pressure anywhere and everywhere, almost like a firmer massage is OK. Some points may really really hurt. But gently, and if you can handle it, don't back off when it starts to hurt - unless of course it is unbearable then stop. If the skin is too sensitive, try some plain olive oil or something and that might help with the points.

Keeping fingers crossed.

[monotreme]

Sorry, I was out of town today to see an alternative medicine doctor till I can get into Dr. M. in oregon in February.  Have you thought about taking Magnesium?  I think on a previous thread Quix mentioned she takes magnesium orotate and there is also a magnesium glycinate, both of which would be good for spasms.  

I have my wife rub out spasms on my feet, I use a heating pad.

Also, try a bar of soap under your sheet at the foot of the bed.  Any soap EXCEPT   DIAL  brand.

Finally, if there is any reflexologists near your house I would highly recommend  getting a session.  They use pressure points on the soles of your feet to relieve stress and spasms.  It helps me.

Craig

[frann]

Sorry i did not get back to you sooner... been a little busy getting ready for the surgery but i did want to tell you that i tried tonic water & it did help and i heard that lyrica can also but i did not stay on it long enought to say it was worth it...

Have you seen a physical therapist?
Maybe they can help you with the spasms.  I went to mine months ago and they did help me to some degree... definitely let the neuro know that things are progressing to the point that it is life altering.

Hope you are feeling better. I will continue to keep you in my prayers.

God bless,
Frann

[karzme]

I would suggest trying to see a physical therapist if you can. I was having alot of spasmic pain in left thigh for months. I went to a physical therapist and he gave me some exercises, to strengthen the muscles. I have seen improvement since. I am still doing them. So see if you can get in.  Karina

[Millerman]

Hey, Zilla,
I'm just spitballing here, but magnesium supplements, B-12 supps, and making sure I eat a few bananas every day seems to help me some.  Also, rest--good sleep--which is hard to get.  Tylenol PM works.  

And I second the notion of the magic of massage.  It's expensive (unless you have a willing partner), but it can really unpack some of that tension.

I'm sorry you're in no-man's-land in terms of a diagnosis.  It wouldn't hurt to visit a second neuro and get a second or even third opinion--even the opinion of great doctors can be augmented by a second point of view.  And consider a visit to an infectious diseases doc, even if it's just to see what s/he says.  

And hang in there.  :)

[chrissinlongisland]

I just read this post...wow.  I am glad your feeling better today. I remember those days too.  I would stop each week back in 2005 at the soda distributor to get me some tonic water. I had toes and fingers going in weird directions, leg cramps and those neck ones are really bad.  I only needed a bottle  of the stuff  a week to keep it a bay for a while.  This time my left leg was so cramped up during this episode  and so painful and uncomforable the doc gave me Gabapetin 100mg at night for my leg pain.  I took it for a week then switched to Percocet 5/325 for 5 nights and now I only take motrin if i can't tolerate the pain of it.   Gosh, I hope these docs help you out with these cramps.  Goober, needs a real home.  I hope he naps like Rip Van Winkle and doesn't bother you anymore. Hope each day gets better for you.

[Momzilla]

Take it easy, honey!

I didn't get that vibe from him at all.  I know he knows I'm hurting.  He's not brushing me off.  He told me to take Advil, continue Icy Hot and stop wearing shoes with no backs on them (didn't mention those last two, did I?)  My toes aren't strong enough to keep mule-style shoes on.  I shouldn't have worn them to work yesterday.

I appreciate your indignance, I really do.  I get it.  I know Quix is going to be ticked off if she reads this, too.  But I think he's just saying that he doesn't know what's causing the spasticity (that's what it IS, right?) so he wants me to take OTC Advil until he can figure out what's wrong.  

I am feeling better today.  If I get bad again I'll phone my neuro's nurse.  My neuro isn't even in the office until tomorrow, I don't think.  I really have the feeling my endo is going to call my neuro.  They're close -- neighbors, even.  In the meantime, I do have some muscle relaxers from many moons ago.  I'll chase them with some vadka tonics!  Kidding!

So, keep your voice down, Goober just feel asleep...Thanks for your concern,

Z*

[essdipity]

That endo is maddening. Try calling the neuro again, and keep calling until you can talk to HIM and say what's going on. It's a sad reality that the squeaky wheel gets the oil. So what if they think you're a pest. Tough, you're hurting! Sooner or later they'll get tired of your calls and DO SOMETHING. I hate it when I have to be that way, which fortunately is rare, but when I do, I do.

I'm sorry to seem to be yelling, and it's not at you, of course. It's at life, and at these illnesses, and at doctors who need to be horsewhipped. Of all the smug, condescending and self-inflated people on earth, this bunch seems to be the worst.

Well, now I feel better, anyway. I hope you will too, and very soon.

ess