[sabby]

Seven years ago, I became ill with some neurologic dysfunction and went through testing for MS. I was on tons of meds....had tons of testing done. My last visit to the neuro really ticked me off. His words to me were that if this is MS, it's a very mild case and I should be fine going forward. Hmmm...how supportive. Basically telling me to deal with it and stop complaining. So I said to heck with it and that's what I did. I dealt with it. I've had issues here and there with they symptoms every year since but I've shut up and dealt with it. Never went back to the doctor for anything except to my pcp for yearly exams. I have had no insurance since 2003. So nope, sabby does not go to the doctors unless absolutely necessary.

Well, the other day I had to make an appt with my pcp. I'm surely having another exacerbation of MS like symptoms. Almost as bad as 7 years ago. Well on second thought....as bad or worse even. The pain is worse. The twitching and tremors are not as bad so far, unless I'm feeling really stressed/tired/anxious, but the nerve pain is really getting to me. The numbness and tingling is all over my body this time...from my face to my feet. The tingling brings with it hot, searing nerve pain. Some days, my face feels swollen and heavy....almost every single day my left side feels heavy and clunky and numb. *sigh* I really hate this.

So off for round two of EEG's MRI's Evoked potential testing, and more bloodwork. In order to do all those things, I now have to apply for aid from the hospital/state. It's all very depressing and frustrating. What the heck am I going to do when both grandbabies are born next year? I just don't know how I will handle it all....I just don't

[nowheretorun]

sending care and hope and kindness for you ((sabby))) to feel alone is the most horrible feeling i think... PC helps us so much in these times... i know you are very wise and educated about health matters and there is little i can offer you in the way of knowledge, but you have my prayers always

[cantstopcrying]

(((((((((((((((((((sabby))))))))))))))) giving to you what you give to me. Take it one step at a time with no worries about next year until you find a treatment plan. Those grandbabies are going to be so blessedly lucky!!!

[bebop]

sabby my sil has ms and so far has managed to keep working somehow but there are days I wonder how she continues. I know during her bad times she has to have weekend iv treatments at home. let's hope and pray this is not MS hon.

[BlueFaith]

((((( sabs ))))) I'm so sorry you are having so much trouble, and I couldn't even imagine what it's like to not have insurance at a time like this when you really need it. I hope you are able to get help from the state. I have faith, though, that the docs will get to the bottom of this and help you. I wish there was more I could say/do to help you. You are in my thoughts and prayers... always.

, Jenn

(((sabby)))))))))))))))))) so wishing you were not going threw this
I am very glad you made a apt with the Drs.
Fill out what ever you need to do for ins. So you can get help and be there for those grandchildren
I truely am sorry you are going threw this.
Sending all my prayers and thoughts for you
take care of you my friend
((you matter)))))))))))))))))))))))))))))))))))))

[Cthomas]

(((((sabby)))))

Hoping things get better for you my friend.

Hugs.....

Colleen

[sabby]

((((( nwtr ))))) Thank you very much for your care and support

((((( csc )))))) I really can't wait for the babies to be here. How our lives are going to change. But I also have this feeling of impending doom at the same time and it's not sitting well with me. It' hard to hide it from my family....although I am succeeding in doing so. They already have so much on their plates, and until I know more for sure what is going on, I will carry on per usual.

((((( bebop )))))) My heart goes out to your SIL. She sounds like a strong woman who is doing her best to battle through each and every day. My thoughts and prayers go out to her. I'm praying it isn't MS as well, but I really can't figure out what else it could be. *sigh* Time will tell I suppose.

((((( MP ))))) Yeah, no insurance really sucks big time. But, like you, I do have faith....and I learned from a wise person..."you always get what you need". So I will hold onto that when I can and I know I'll be ok

((((( muffy ))))) Thanks very much hon....I wish I wasn't going through this either....timing really stinks!

(((( Colleen ))))) Thanks hon....I do appreciate you and your support!

Today is worse than yesterday. My left arm is in a lot of pain. I am very weak in that arm and I also noticed that my left ankle seems to be stiffening up and when I walk it's feeling pretty painful as well. The tingling, especially in my left arm is searing hot....on the outside of my upper arm and on the inside of my lower arm down to my thumb.

I still have not heard from the dr's office about the neuro referral...guess I need to get on the phone and kick some butt.

Thanks everyone....you help make me feel better!


sabby

[mlpHolmes]

Sabby~

Please get back to me as to where you live, if USA, which state. I will do my very best to get you help.

Much Love,
Holmes

[daggy]

((sabby))all I can offer you

[wanttoheal]

((((((((((((((((((sabby))))))))))))) I'm so sorry you are having to deal with this right now. I hope the dr appt will bring some good results. Please take good care.

[cantstopcrying]

[sabby]

Finally after 8 days, I got my referral and appointment with the neurologist. I go on January 2nd. You wouldn't believe what I had to go through to finally get the referral....you know the old saying..."incompetence rules the world" *sigh*

I was feeling somewhat better today. Not as much pain, not as much tremor/twitches. But I have been completely exhausted and I haven't done a dang thing. So much so that all I want to do is sleep. This is NOT like me at all. And now, the pain/numbness/tingling tremors/twitches are coming back.

Grrrrrrrrrrrrrrr.....I guess I'll keep a journal of my daily issues so the doc knows what I'm dealing with. I just hope I find the energy for the holiday that I'm going to need.

Thanks everyone for your love and support...it means more to me than you could ever imagine!


sabby

[Zorah]

(((((sabby)))))
the journal is a really good idea, especially as it's so long until you get to see the neurologist
good luck hun & we hope you don't feel too bad over the holidays
there is nothing more exasperating than to have the doctors fail to dx you correctly

[sabby]

((((( Zorah )))))))

Thanks hon.....the symptoms seem to be calming a bit yesterday and today...hopefully they will go away soon (oh please oh please oh please LOL).


sabby

[wanttoheal]

((((((((((((((Sabby)))))))))))))) I hope you feel better and they can figure out what's going on soon.

[sabby]

Ok, so I went round and round with the neuro...had a horrible doc, very invalidating and such...won't go back to her ever again.

Word is, I'm having small ischemic attacks (TIA's) probably caused mainly by migraine headaches and possibly my Type II diabetes. Also thrown in the mix is now a dx of fibromyalgia, just for good measure. (very possibly could also have Chronic Fatigue, but that remains to be seen)

The neuro suggested fibro to my family doc.....funny, she never mentioned it to me.....grrrrrrrrrr

Doc did all the 18 pressure points and I have problems and much pain with all but 2 of them.....great.....lovely *sigh* So anywho....at least we have something to work with here. Doc is starting me on Cymbalta and flexeril for the fibro and I'll see her in 3 weeks to see how I'm doing on them. Feeling better can't come soon enough!!!


sabby

[SweetSunshine]

Sabbywabbywoohoo,

So very sorry that your having the TIA's and now the fibro dx. No fun. BUT its not the end of the world. Yeah your gonna have your good and bad days. But if your able to get your life balanced out more and with the medication and even diet and exercise , you could have more good than bad days.

I went to physical therapy to learn how to manage my pain more thru stretching and when to use hot and cold methods to relax my muscles and to relieve the pain. Also massage helped me quite a bit.. when I could go. I hope to return to doing that later this summer along with the chiropractor.

Also, just a small warning. I was on cymbalta also. It helped depression and pain really well. But there was one side affect I had that made it absolutely intolerable. Stomach cramping and well you know what goes with that. Usually started up about an hour to two hours after taking it and lasted all day long. I know everyone is different. So this may work well for you and you wont have any problems. I am also on mobic for my arthritis ( which also helps the fibro's inflammatory symptoms) and Ultram ( pumped up version of Tylenol) To let you in on a little secret.. those are both the $5 drugs at Walmart. So unless you can get your prescription ones cheaper... maybe ask about those if you want. I have also used Wellbutrin.. and I absolutely love this AD for fibro also. Another thing that affects fibro is humidity . The less humidity you have around you the better you will feel. So think about moving to Arizona lol.. We've actually discussed it when hubby retires lol. We'll see.

I hope something in what I suggested helps you in one way or the other. Ohhh and nice hot baths help also!! Very good for relaxing the muscles. Swimming is also good for a gentle non impact exercise as well as a gentle yoga.

Thinking about ya. Take care and always here for you if you need to talk about this crappy dx.

Hugs
Beth

[sabby]

Thanks so much for the great info (((((((((((( Sweet ))))))))))))) Sounds like good advice and I'll keep it in mind and go with it

It's just nice to finally know what's going on and making a plan from here on how to deal. Time will tell....I'm off and well....not running but stumbling/tripping and the occasional shuffle


sabby

[lizardlady]

Aw jeeze sabby, what a laundry list of dx! Am willing to offer any insight or suggestions about fibro and/or chronic fatigue. I have both.

[sabby]

Thanks so much ((((((((lizardlady)))))))))))

I'm sorry you suffer from this stuff....good grief it is rotten isn't it?

I must be in a bad flare right now cuz I am in a lot of pain and fog...omg the fog is horrible....ugggh.

Is there a way to know the difference between the fibro and the CFS? How about being able to distinguish after being on meds for the fibro? This is all new to me....I'm a tad confusilated LOL.


sabby

[lizardlady]

Sabby, ther's so much overlap in fibro and CFS symptoms it's hard to tell which causes what. Some/many docs consider them different ends of a spectrum with fibro representing the pain end and CFS the fatigue end. Instead of trying to separate which symptoms comes from which dx I (with my docs) treat the symptoms.

I take Provigil to help with the fatigue and fog. It's actually a med for ADHD, but helps with fibro fog. There's a new med on the market called Lyrica that's suppose to help with the pain of fibro. I tried it, but coundn't handle the side effects. OTC pain releivers like ibuprofen work for some folks to help with the pain. There are other prescription pain meds like Tylenol 3 and Darvocet that work for some.

Some non-medical things I do...

Yoga and Tai Chi on days I don't hurt too much help by gently stretching.

I have an electric heated throw I wrap up in. It is a sanity saver some days.

Soaking in a tub of hot water with minerals designed to ease aches and pains.

I found if I sit for too long I start to hurt. So I try to get up and walk around a little every hour.

For the fog I've learned to write things down. I make lists. I stick posties on things. I have other people write things down when they tell me. I keep a calendar that I call my bible. I'm lost without it.

I'm still struggling to sort out conflicting recommendations for fibro and CFS. Folks with fibro and encouraged to get gentle exercise. Folks with CFS are encouraged to rest. I haven't figured out how to do both.

Hope some of this is helpful.

[Irine]

Wow i am really soory to hear you that you have such a desease. it probably doesn`t let you function as you please

i`ll keep you in my thoughts and prayers.

i cant imagine what it is to live with such a disease.

I hope you get an insurance.

sabby, I am on Lyrica for my fibro and CMP. (which frequently overlaps with fibro) It lessens the pain but makes me extremely tired. Maybe Cymbalta does the same?

Let's face it though, being in pain all the time EXHAUSTS every cell in your body, even our brain cells. Add the fibro fog and why wouldn't we all be depressed?

I take Flexeril as well but it doesn't seem to do much of anything. I hope they find something that works for you soon.

[sabby]

Well, I can see that there are things that help and things that don't. Seems like a forever circle that most folks with CFS and Fibro seem to go through most days. As I sit here and think about it.....it's so true. Although I don't remember the last really good day that I had where I didn't feel fatigued or in pain or both. And the depression...my goodness, it is just getting worse and worse. I'm really kind of worried for myself and I'm battling not to let it overtake me as there is just so much that I have to do (IRL).

I do have a question for those of us suffering with this..... How well do your loved ones understand or even tolerate what you go through? How hard has it been to be able to set your boundaries and not feel guilty about setting them? Sorry, that was two questions LOL.

to all who are blessed with these two chronic illnesses.......it ain't fun


sabby