Needing to vent

[spastic]

  I feel I need to make an apology, I'm sorry I havent been feeling the best lately and havent been posting or responding like I usually do.  I feel really bad about it.  I have been a little down in the dumps when the newest tests have ruled out some of the other mimics so I have been in a "No this can't be happening to me" attitude.  When talking to my rheumy and going over the new tests he told me he suspects MS for sure now and the wait to see the neuro is killing me.  I have been making a timeline and going through my medical records and finding all the abnormal neurological anomaly's.

I did have to laugh at one trip to the ER for total right sided numbness and reading the doctors note that I had overmedicated myself or my migraine headaches caused the strange occurence. I take my medicine as prescribed and had that way for years, he did not do a ct scan or mri but once again dismissed by yet another dr. Or getting dismissed by a neuro saying I had stress and that was causing the leg heaviness and the Raynaud's when he didn't even look for any evidence of it and finding out years later that it was livedo reticularis not Raynauds.

I guess right now I feel very cynical, I see all the signs and right now I am sick and tired of being sick and tired.  I hate being dismissed by doctors. who think they know everything.  Again I apologize for my sarcasm, I feel I might burst when I see the first of two neuros.  Thank you everybody for being a friend and listening to me.

Love to All,

Spazie Ada

[shelbss17]

Oh one more thing.... I too have terrible back pain, almost everyday. I see alot of us do. Is this typical of MS? Not to mention the bladder issues. UGH frustrated here too in OHIO ....  

[shelbss17]

Hugs to you! I totally understand how you feel! I often tell my Family the SAME thing.....I'm sick & tired of being sick & tired. Did you have any paralysis on your right side? That was my first flare up. I woke up to my right arm and leg being numb, but I could not move them. My leg recovered quickly but my right arm was partially paralyzed for a month. I've been dealing with these kinds of things since October and I can't take it anymore either.
Get angry, cry & let it all out. Sometimes that's what I have to do.
I'm thinking of you! And praying for you & everyone here.
I'm in "limbo" too and it *****!
((((((HUGS)))))) XOXOXO
Shelby <3

[Werle]

I know how you feel. I have been experiencing symptoms since childhood. I was a paracticing RN for 25 years until a year ago. the last seven years my neuro status has deteriorated significantly and had to go on disability a year ago. My symptoms were very much like MS too. Please research complex regional pain syndrome. Viruses, infections, autoimmunity, surgeries, injuries can cause these symtoms. Smoking and any toxin exposure can make symptoms worse. Caffeine, spicy foods and extreme temps can also trigger symptoms. Also changes in hormones can make symptoms worse.Any injury to a nerve, spine, brain, muscle can cause CRPS.They do not what causes it but the theory is that it can be caused by an injury to the dorsal horn or dorsal root ganglia or the way the brain processes the injury. Herpes viruses like EBV lay dormant in those areas also. When a nerve is injured for what ever reason the nerve function can change when it heals.
Keep a diary and take note of triggers. Keep moving but do not over do it. Eat a healthy diet and do not smoke. If you get an infection get it treated right away. Keep hydrated. take a multi vit, Kelp supplement and fish oil. Get allergy tested...anything that causes an over reaction of your immune system will cause injury. Dont give up. There are so many people with the same symptoms...You need to be your own advocate and do not let these docs dismiss you. Good Luck to all of us.

[Freespirit24]

Right now I need to deal with the pain and i have started on Lyrica even though my disability does not pay for it, I am trusting we will manage. It will take 2 weeks to see if the dose is right.

I am going to follow through to find answers as I now have more questions than answers. I think the first will be a Neurosurgeon. I need to know where to find a good one then ask for a referral.

I do hope you know that people care and are here for you. I will be praying all goes well for you.

Hugs

sarah

[MCBCON]

I did not notice a change in your responses.  This probably because I do not read everything.  Too much to read.

[spastic]

  Thank you all for supporting me.  Sometimes it's so hard to just tell someone how bad you really feel but am glad I finally did.  There were so many times I tried to write a response to everyone and ended up deleting it.  I want everyone to know that I am here too, just somedays the words just fail me.
  T-LYNN-How did you treat the livedo reticularis?  I haven't had much input but I figured they were trying to find the autoimmune disorder part so they could treat that.
  Tanky-are you new here? Welcome!
  Sarah-I did read your post about your latest dr appt, are you planning on investigating further with a neuro or spine specialist?
   Rita-You always have encouragement for me.
I appreciate everyone here and love the words of wisdom you all share, Thank You.

Spazie Ada

[Cosmobirdy]

My heart goes out to you right now....I was where you are right now not very long ago at all.  Never, never feel bad about venting, especially in this wonderful place.  We are here to listen and help, and boost you up when you need it... :)  I'm heading out to work, but I will write back to you really soon, OK??  Hang in there....you are strong....
I'm sending some prayers up for you, and lots of big hugs....

Rita

[Freespirit24]

I know I do not know you but reading your post my heart went out to you. I know all about feeling like you are running against the stream when Doctors do not take you seriously.

I also have been experiencing problems getting  a diagnosis that fits with all my symptoms. My symptoms go back many years, with balance problems and Vertigo and numbness. I lived in Australia and there I did not even get a CT scan only xrays of my back which showed normal degenerative disc disease.....................whatever that means. At the time I could barely walk. My symptoms would magically disappear after a while and return  months or a year later. Latest symptoms appeared last year and disappeared for about three weeks and then returned.

An Internal medicine specialist wrote a letter to Primary care Doctor clinic saying he thought it was MS. He ordered CT scans of head, neck and lower spine. It showed bulging discs. So now he says symptoms are from that. It seems easy for them to stop when they find something and say oh there you go that is the problem.

Many people here have spine and back problems and have MS.

Knowledge is power. Get copies of all tests results including copies of MRI's and their reports.

I realised after walking out of his office last Friday I need to take charge of my own health. Doctors as good as some are, would not have any work if it was not for patients so they really work for us. I know we get intimidated by them when they seem so full of their own importance and cut us off when we try to speak but we have to stand up and fight for what we want.

Good on you for making a time line and Documenting things. Make sure it is simple and clear, Doctors are not too good at reading copious notes. My Dr would not even look at mine or my nurse's letter and he refused to keep them.

I will be requesting copies of my pathology reports and my CT scan reports and I will be planning my next course of action i will not be put on hold waiting to see if he will see me again or follow through. I do not have answers to my symptoms and i need them.

Vent all you need to it is a good place to do that because others understand.

I wish you all the best and will be waiting to hear how you are doing.

Hugs

Sarah

[young at heart]

LIVEDO RITICULARIS IS A VASCULAR DISORDER,MANY TIMES ITS IDIOPATHIC(UNKNOWN CAUSE) IT CAN BE VASCULAR AUTOIMMUNE(AS IN MS) OR SEVERAL OTHER AUTOIMMUNE DISEASE,VASCULAR DISEASES,BLOOD CLOTS.

IT LOOKS LIKE A RED WEBBY MOLTY LIKE APPEARANCE,IT IS MOSTLY BROUGHT OUT BY THE COLD,BUT HEAT CAN OCCASIONALLY CAUSE THIS.SOMETIMES IT CAN BE PAINFUL,NORMALLY EFFECTS THE LEGS,BUT CAN EFFECT ANY BODY PART.

T-LYNN

[tanky]

I'm sorry you haven't been feeling well lately.  Please don't apologize - just vent away!  It sounds like you have had some experiences with doctors that could use more training and compassion.  I hope you're feeling better soon!  

Question - what is livedo reticularis?

[young at heart]

YOU VENT SWEETIE,MANY OF US ARE WHERE YOUR AT NOW,PLEASE DON'T APOLOGIZE FOR NOT BEING UP TO PAR AND BEING ON THE FORUMS.

WE ALL HAVE TAKEN A BRAKE FROM HERE ,WHEN WE WERE DOWN OR JUST PLAINLY FEELING LIKE ****.

YOU MENTIONED LIVEDO RETICULARIS, I FOUGHT A BOUT OF THAT A YEAR AGO  AND A SPECIALIST AT THE HOSPITAL WAS THERE AT THE TIME AND KNEW WHAT IT WAS INSTANTLY.

I'M SORRY THAT YOU HAVE DEALT WITH SO MANY DEFECTIVE NEURO'S.THEY CAN PUT A MAN ON THE MOON,BUT CAN'T DEVISE ONE TEST TO SAY YES OR NO TO MS.

I'M GLAD YOU ARE GETTING YOUR MEDICAL RECORDS AND TIMELINE TOGETHER FOR WHEN YOU SEE THE NEURO.

PLEASE DON'T BLOW AT THE NEURO WHEN YOU SEE HIM,HE'S NOT AT FAULT FOR THE DEFECTIVE DOCTORS YOU HAVE SEEN.

REMEMBER MS IS MANAGEABLE AND LIVEABLE,YOU DON'T HAVE TO DEAL WITH THIS ALONE WE WILL HELP YOU.

ITS SCARY WHEN REALIZING THEY ARE FINALLY LOOKING AT MS,EVEN THOUGH ITS IN THE BACK OF OUR MINDS,THE REALIZATION TAKES IT TOLLS.

WE ALL GET CYNICAL FROM TIME TO TIME ABOUT OUR HEALTH AND THE DIPS WE DEAL WITH IN THE MEDICAL COMMUNITY.THERE ARE HONEST TO GOOD DRS OUT THERE.

WE ALL CAN RELATE TO GETTING TIRED OF BEING SICK.PLEASE HANG IN HERE,YOU NOT ALONE.

SENDING YOU HUGS

T-LYNN