Scared and feeling very alone

[spastic]

Is it a bad thing when you go to your rheumy and he finally admits you dont have fibro?  that he has it narrowed down to 3 things, ms, stills disease or some unknown parasite in the blood. I went to him on Monday and he immediately got an appt for me to see a neuro, he said my reflexes on my right side are poor and my gait is off. I have severe spasticity in my legs and walking is very difficult for me. I sometimes feel like there is no ground underneath and have frequent falls from it. I also have livido reticularis in my legs. I had an appt with s.s. dr and he says I have severe cognitive impairment and he advised my husband to not let me handle money or drive. I sometimes have severe muscle spasms that lock me up and embarrasing enough have incontinence when it happens. The neuro is booked up for the next month. I am desperate.

[spastic]

Hello, I just woke up and read your post, you guys are right, i have to conserve energy.  Thanks, ada

[gooddays]

Using a wheelchair, when really needed, is not giving up.  It is called energy conservation, which in our life is necessary.  don't be so hard on yourself, everybody else has.  You deserve to be respected by who and what you are, or even if you are sick or not.

Ms is something that gives your life a 180 degree turn and you never thought it would happen to you.  It is good thing that most of us have found this great forum, where everybody wants and tries to help, at least with encouraging words.  You do not have to feel alone anymore, we are just a message away.  Talk to us, vent out, cry or do anything you need to do, we all know what you are going through.

Take good care of yourself and I do not know if you have been able to read a lot of the posts this forum has, but once you are in, you are not allowed to leave.

Lots of love and something that I always finish my posts with is:  We have MS, but MS does not have us!!!!!!!!!!

Take care and we all want you to be here.

Gooddays

[spastic]

HI! I was just going through my old posts and must of missed ya, I'm sorry. What medication works best for you? I was first dx with fibromyalgia and at my last r heumy appt he told me it isn't fibro so today when i drive almost 2 hours away to see my pain specialist she basically didn't want to do anything for me today until I have a dx. Deep down I know I have ms but they are ruling out everything else first. They have me narrowed down but i dont see the neuro until the tenth of march, long waiting, almost driving myself crazy. this forum is the best.  hugs, ada

[tmjfibro]

HI ADA
WELCOME  .I HAVE SUFFERED FROM FIBRO FOR 12 YRS .I AM STILL IN LIMBOLAND WITH A DX OF MS .I TO TAKE GABERPENTIN AND LOTS OF OTHER DRUGS TO MANY TO MENTION .ALL LEGAL I MIGHT ADD  LOL .I USE A W/C .WHEN I HAVE A BAD DAY .I DONT CONSIDER IT GIVING UP IT JUST MEANS I HAVE MORE ENERGY NEXT DAY TO ENJOY OTHER THINGS

THIS IS THE BEST FORUM EVER WITH THE MOST KIND AND SUPPORTED
FREINDS EVER .I HAVE HAD MOMENTS WHERE I HAVE BEEN SCARED
WITH SOME OF THE WONDERFUL STRANGE SYMPTONS

THERE IS ALWAYS SOMEONE TO HELP


HUGS TMJFIBRO

[spastic]

Thank You. I love the name spazie legs! Thats great.. I needed to laugh today! My real name is Ada and I live in Iowa. Thanks Heather, I feel this is the place I need to be.

[Heather3418]

If you feel that by using a wheelchair, that you conserve your energy, then by all means, use it.  Try to keep up your muscle strength though and walk when you feel up to it.

I am so sorry that you are having to go through all this turmoil.  And Spazie legs (my new nickname for you) you are NEVER alone as long as this forum exists.  That's what we are here for.  

I don't know about you, but if it weren't for the love and support that I receive on this forum, from the group of Angels with Invisible Wings, there are many times I would have given up.  I have had my diagnosis of MS for over a decade, but these people on this forum have gotten me through some really tough times, for sure.....

If you need ANYTHING please do not hesitate to ask.  We will ALL try to help when and if we can.  We are not experts, but we try....

Big ((((HUGS))))

Heather

[spastic]

I've been taking gabapentin for 4 years for the heaviness and nerve pain I have in my legs. I also take flexeril and wear lidocaine patches. I will call about a cancellation list and get on it,great idea thank you. I would really like to bop somebody in the head, it has been a roller coaster ride for so long. I have a question, is it okay to use wheelchair for those days that aren't so great? I feel like if I give in and use one I am letting it take over me. Thank you for responding and the advice, it really helps knowing your not alone.

[Heather3418]

Well I guess the only good thing that came out of your visit, was you were told you do not have Fibromyalgia

If you can get into the Neuro within the next few weeks, I would jump at the appointment.  Most Neuro's are booked up for 2-3 months.  Must be cause they have so many patients that have to make return appointments, because they can't seem to diagnose diseases like MS.

Are you currently on any symptomatic medication to help with the spasms and incontinence?  What are they going to do about the cognitive problems?  Do they offer anything or any advice, while you wait for an appointment with a Neuro?

I sure hope that you get some answers and soon.  This is ridiculous.  I am sure that you are at the point of bopping someone over the head.

I hope you feel better soon....Please keep us posted and get that appointment with that Neuro as soon as possible.  Also see if they have a cancellation list and get on it...

Feel better,
Heather