The last time I logged in SOMEONE ask if I was ok?

The truth be known, no I'm not ok and quite frankly I'm scared to death. For the most part I think I'm a pretty tough cookie but this is spooky because it's about me and not someone else. I don't do me well at all, never have.

This is probably the most serious you'll ever catch me but as the title of the thread says "I have a serious question and need some serious advice".

Does anyone here have or know someone who has MS {Multiple Sclerosis} or Fibromyalgia ?

For several years my medical doctor has been tracking so called 'episodes' or 'flairups' because she thought I fit into one category or the other. She's wanted me to go in for an MRI, CT Scan and bloodwork but I never bothered. I was always too busy takin care of someone else to deal with my own health issues. Well push has come to shove and it's time I do something.

I've had two rather disturbing phone calls this week.........One we just wont discuss because I'm still upset and confused........I sure could use a straight answer. How about it Cowboy? The other was from my doctor who wants to see me asap once I get back to California for my visit next month.

I have arthritis in my left knee, hips, shoulders and hands so I'm familiar with bone pain but all of these type 'episodes' feel more muscular. Past 'episodes' had me feeling tired, my body hurt like I had the flu, I was also stiff and sore as all get out. Not to mention I always turn into a real crybaby. Up until the past two months when they'd happen it was no big deal I'd just rest and chill out and it would go away.

I've had two really bad 'episodes' within the last 6 weeks. I'm right in the middle of one now. They've changed though. I'm stiff and sore to the point that I had a rough time tryin to get out of bed yesterday. My body was not gonna cooperate. I musta layed there for an hour cryin myself stupid before I got mad as heck and drug myself out of bed. Once out of bed I couldn't straighten up nor use my left arm for a couple hours. A hot shower didn't do the trick, motrin, vicodin, percocet, nothing did. Today was better. I can move better but my arm is still bothering me.

None of it makes any sense. It can come from doing nothing or from doing everything. It can hit one day and the next I'm fine and then the day after I'm a wreck again.

Will someone please tell me that they know what I'm talkin about because I feel like I'm loosing my ever lovin fuzzy little mind.

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Your courage today will be the light that leads you tomorrow.

Shandera, you are not out of your ever-lovin' mind. My daughter has been experiencing similar symptoms for a couple of years now. She, too, has flare-ups... and while she eventually returns to what I'll call "normal", it's a normal a few steps under the previous normal.

Additionally, she suffers from trigeminal neuralgia. ulcerative colitis, and arthritis and scoliosis of the spine. While she's certainly a functional and regular 27 year old in many ways, I doubt she has a day without pain. As you have, she has been prescribed all sorts of drugs for pain relief. She's also seen an pain management specialist.

Every doctor she's seen (and there have been many) suspects she has MS, but other than elevated ANA's, her other tests are negative. We feel like we're in a holding pattern.

In the meantime, though, the trigeminal neuralgia has gotten worse, so next month she is scheduled for MVD surgery. The doctors at Einstein (in Philly) will open her head, locate the nerve, and wrap it in teflon in an attempt to give her some relief.

I'm sorry, Shanny, that I can't offer you any help or advice. But you're not crazy... and you're not alone. And, at this point, I think my daughter is more angry than scared. She wants answers, and there just seem to be none forthcoming... <sigh>

Hugs, my friend... and despite the bad news, it's good to see you back with us.

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Shandera, if anyone is crazy around here it's me!

YOU GIRL have got it together, you just need to find that inner strength cause I know you got it!

As a matter of fact, Iam sending you a PM about something.

I hope you find out for sure what is causing your pain but no you are not out of your mind.

Let's hope for good results from your DOC appointment.

If nothing definitive turns up, have your doctor look into Celiac disease, which is a result of wheat gluten intolerance. Some of those symptoms you describe fit with that. My mother was just diagnosed with this recently. In her case, the symptoms she was experiencing led her doctor to think that she was going to need heart valve replacement surgery and bypass surgery. They sent her in for the preliminary tests and she turned out to be highly anemic, which prompted them to test for this problem. She will not be having the heart valve replacement surgery, as increasing her iron intake and starting the changes in her diet brought on marked improvements.

Anemia, depression, behavioral problems, osteoporosis, autoimmune conditions, type 1 diabetes, and rheumatoid arthritis are all conditions that can be brought on by this. I will have to be tested for this, as it is genetic. I'm not looking forward to possibly having to completely overhaul my eating habits, but will if I have to.

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Dynamite comes in small packages, Nitro comes in smaller ones, take your pick!

Awwww Duckky girl I don't know what to say. Hugs to you and please keep me posted. Any chance I can send a card to her? How long will she be in the hospital?

Thanks CG & Lilbit at least I know I'm not wacked on Scooby Snacks.

Initially my doc thought it was Epstein Bar because when I was in my early 20's I had a bad case of mono that lasted 3 1/2 months.
Apparently the two are related. The test was negative though.

I don't know, there's just tons goin on in my life and not much good really. I think I lost the one thing thats kept me sane.

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Your courage today will be the light that leads you tomorrow.

Bless your heart darling.. I have RHUMATIOD ARTHRITIS, fibromyalgia, chronic fatigue, copd .. it sounds like my problems.. it can strike at any time.. rest is the best thing.. once it gets out of control it is hard to manage..let me know if i can be of assitance.. I have been dealing with it for about 9 years now..stress can play a big part of it also..

Hi Shandera, I am so sorry to hear you are not doing well!! I have looked MS up in my nursing book
MS- Onset is often between age 15-50
Many experts believe that it is caused by a inflamatory response, caused by the individuals immune system, perhaps triggered by a virus in genetically susceptable individuals.
The diesease usually begins with periods of exacerbations,(sypmtoms) and remissions of days and weeks but may begin or rapidly progress, to more static, through progression.
MS_Wehn the myelin sheath (the nerve covering) is first damaged sypmtoms may be mild or barely noticable.
The sheath is able to regenerate, in the early stages, but thru out progression of the disease, the loss of myelin, allows the underlying nuerons to be permanently damaged.
Symptoms are then more pronnounced
stages of symtoms(exacerbations) are then more pronounced over time.
Because of the variable and insidious onset of MS the diognosis may not be made until long after the symptoms have appeared.
EARLY SYMPTOMS vary widely and may be manifested
eye pain
vauge or pronounced numbness
bladder retention or urgencies
problems with balance
attention defecits
and other cognitive changes have occured

With progression, severe advanced can cause
paralysis
spactisity(uncontrolled muscle movements)
tremors
incontinnence
slurred speach

Diagnosis is based on
clinical examination
symptoms
and laboratory examination of CSF (cerebrospinal fluid)
Steroids and some interveious drugs have been found to help, there is no cure, only help with the symptoms.


I have nothing in my book about Fibromyalgia,All I know off hand, is it is a nuerological disorder, and have people to suffer terrible pain involved with it. I cant believe it! I will see if I can find you an informative web site. If you hve any questions, feel free to ask, and I will try to find it for you!!! I hope you get to feeling better soon. I hope I have at least helped a little bit!!

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I don't have any answers for you other than to tell you that it is not all in your mind, it is real even if they can't figure it out yet. Stay positive and you will be in my thoughts.

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Shanny, I have no real answer for you. I wish I did. But I do understand what you are talking about. Seven years ago, I ripped a muscle in my chest. I couldn't do anything normal. I ripped it so thouroughly that you could actually feel the rip under the skin. To this day it has not completely healed. It still aches at times. It still rips again very easily. It's ripped again now. And then there are times when it "tweaks out". My hubby can lay his hand on it and feel the muscle shaking...

No. You have not lost your mind.

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Hi Shandera,
I found a page on wiki that talks about fibromyalgia, maybe it will help?
[LINK POSTED BY MEMBER] Only Members Can View This Truck Forum Link.

I'm a nurse myself, and for what its worth, your description doesn't sound much like MS to me, although there are several different types, some have episodes and others have a more ongoing pattern.
Next time you have a flare-up, go for bloodwork, and ask for a CRP, it will tell them a lot about whether it is a temporary infection or something ongoing that is behind it.
But an MRI scan is the best way to go, get a real diagnosis / answer, then you can begin to tackle it head on, find out as much as you can about whatever is happening, and get linked up to sites that know about it!
Most doctors only have limited knowlege about neurological stuff, and these days they find that patients with more unusual conditions know more than they do, thanks to the internet!
And stay positive, this "not knowing" is the worst bit, it will get easier once you know what you are dealing with!