Ms? - Boynton Beach,FL

My first thought was lymes. Its tricky and not always easy to get a definate answer. How bout lupus? That can make you very ill. I hope it isn't MS. If I were you id be my own advocate. Go to web md, or google every one of the symptoms. There are so many" isms" out there its crazy. Mystery diagnosis is my fav show. Don't give up mama. Keep us posted.

I'm so sorry you're going through this. Vent away!!

I have fibromyalgia and must say 1) any auto-immune disorder (such as MS or fibromyalgia) is difficult to diagnose as other things must be ruled out first, 2) have you been evaluated for fibromyalgia, cousin of MS? Your symptoms; numbness, brain fog, muscle spasms, neck and shoulders tight, headaches, overheating, no energy...sound like mine. I also have IBS, depression, chronic pain, insomnia, dizziness at times, stiffness upon waking or after being in one position too long, sensitivity to loud sounds, etc., and 3) did you sustain any type of trauma or stress 2 or more years ago, which can bring on fibromyalgia? (I fell down a flight of stairs before mine began.)

My GP made the diagnosis within a few months after I started seeing her, (yet I had been suffering for about 7 1/2 years prior and had pretty much suspected this is what I have) and sent me to a rheumatologist to confirm the diagnosis. Here's some info on fibro: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001463/

Oh, and this is something going around on Facebook ~
'It's hard to explain to someone who has no clue. It's a daily struggle feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness (Anxiety, Bi-Polar, Depression , Diabetes, Lupus, Fibromyalgia, Crohn's, IBS, MS, Arthritis, Cancer, Chronic Fatigue Syndrome etc. " Never judge what you don't understand.'

Wish everyone knew this.
I hear you, it is SO not fun, sigh :-/
I hope you have a diagnosis soon, knowing helps somewhat with feeling validated. ❤

I have a neighbor and an uncle that has MS and I can't believe all that they go through. I don't know the symptoms, but i have a suggestions.
I couple weeks ago I was told to watch a documentary on Lyme Disease called Under My Skin. It's on netflix if you have it. If not there are month trials you can do and watch it that way. I would suggest watching it and seeing if maybe that is something that sounds familiar.

A friend's wife was diagnosed with MS over a decade ago.
She was misdiagnosed - she has had Lyme disease all of these years. Unfortunately, since it has gone on for so long she does has some irreversible effects from it now.

Another friend of mine went through all the MS testing - she has a thyroid condition.

Please do not rest, nor let your doctors rest, until every possible illness is ruled out.

Good Luck
God Bless

I know exactly what you're going through right now. I don't care what's wrong, I just want the doctors to figure it out and start fixing it.

I have a lot of those same symptoms. My issue lies in my adrenal glands and has spread to my kidneys. I don't know if I've been tested for Epstein Barr. Try going to see an endocrinologist and explain your symptoms to him and see if they find anything.

I don't know anything about MS. They tested me for it, but didn't find any lesions so they said it wasn't MS. I have an aunt who has it and a friend. My aunt doesn't talk about it too much (she's the strong independent type: won't let anyone know when she's hurting) and my friend blames everything on it. (He calls into work cause of his MS...then posts on Facebook how he went to the movies.)

I hope they find out what is wrong with you soon and you get some relief.

*HUGS*

So sorry you are going through this. I don't have an answer either. I would advise you not to rule out alternative medicines. I could offer a couple of names for you to research if you were interested in that route. One is far away in Oregon. the other can consult over the phone...... Arizona.

I have been diagnostically diagnosed with MS when I was 24! I haven't had any major attacks since my initial attack, but because I had multiple lesions (that were separate in time) and a positive spinal they have diagnosed me with MS. Technically tho' I really take the dx with a grain of salt until I have another full on attack.

My first symptom was really bad dizziness--I was initally dxd with an inner ear infection given some Dromamine (sp) to help with the dizziness. I remember walking to the receptionist desk to check out that day, and the dr. telling "wow you are really dizzy aren't you, you're swaying every which way"

Dizziness faded and then my tongue and gums started burning! I thought maybe a reaction to the medication since I've never taken it before, but when my right side of my face started getting numb I knew something was not right.

In the 2nd week my left leg wouldn't work. It was heavy and did what I called 'glictching' -- I could walk 3 or 4 steps then no matter what I tried my leg wouldn't move I kind of had to drag it! Weird to explain but very frustrating especially because I thoroughly enjoyed sports. Something I still haven't picked up since my initial dx!

My last symptoms was weird, I would try to write words (I was a customer service rep for a billing department) and there were many times I was trying to write a word and my hand just wouldn't write the letters I needed to write. Very scary for me!

These symptoms all occurred over a 2 month period for me. They didn't resolve for over 6 months. My symptoms started in Nov. I didn't get an 'official' dx until that following Feb. where I went for my 2nd opinion and 2nd MRI which confirmed more/different lesions (even tho' I was pretty much symptom free). I also had horrible horrible fatigue during this whole time.

I have yet to take any medication and feel the best I've felt in a long time. I knew my husband and I wanted kids and I was told once I started meds after the pregnancy I would have to go right back to taking them, and no nursing. I also have friends who say the side effects of the meds were just as bad as the MS symptoms.

Since I pretty much went back to normal (6 months out tho') They suspect I have Benign MS or relapsing remitting (which they can't dx until I have another attack) I've had to since switch neurologists and he says based on my history I did have other attacks just not as bad as the first. I'm not too sure on that, but its does seem my burning tongue and gums + fatigue come back pretty regularly.

However, I have felt the best I have ever felt during my pregnancy and nursing my boys. My current neurologists believes I am self medicating, and there actually a LOT of women with MS who do way way better when pregnant. However the chance of relapse is really really high 0-3 mths postpardum. For me I didn't, but I also nursed for 12-15mths w/ both my boys.

They say they are really close to coming out with a pill form of medication that is supposed to help out with the relapses. I am holding out on treatment and hoping it comes really soon.

I know the diagnosis period is horrid. I was dxd 6 months before I was supposed to get married. I was already stressed and the MS just wore me down. I was scared my husband wasn't willing to marry me (knowing it could get really bad), it could jeopardize my chances in having kids, and that I wasn't going to go into remittance and would chronically have to live with random annoyances that kept me from function like a normal person.

It was scary and an emotional roller coaster. I cried when I got the diagnosis mainly because there is still so much not known. But I prayed and it renewed my faith in Christ. Without it, I think I would be some what hopeless. I don't know what your religious beliefs are, but I pray you find peace, and at the very least have family willing to stand by you (definitely nice to have someone just listen. I think the hardest part for me, was I just wanted to move on and try not to really think about it. I got really frustrated at first when everyone kept asking how are you today, are you felling okay etc etc. Later I really welcomed the opportunity to talk about it, it really helped in the long run!

The two best things my neurologist told me NOT to do ( i did do a couple years later tho', but not initially) 1. don't look on the internet, so much stuff out there not true or case specific...2. don't join one of those depressing support groups, a very common side effect to MS is depression something that he sees developing when many sit around and wallow in their dx...

I know it could be a long process. You have a bunch going for you in that clinically it doesn't appear you have MS (at least the test are saying otherwise). I have a family friend who was dxd with MS for over 20 yr horribly horribly sick, ready to just call it quits, when she changed doctors and come to find out she had Ebstein Barr..20 yrs of hell (she was ready to do something more permanant) and it was the wrong Dx. Once they figured out the right illness she is a brand new woman! Just amazing.

You are your own advocate go for 2nd opinions, even 3rd if needed! I will say some prayers for you and hope you find an answer very shortly

God Bless and good luck!

What a mess to go thru,, Have they tested you for Guillain-Barre syndrome ? A young man I know has recently come down with this and some of his symptoms are the same as yours. He is a lot worse than you but we understand it has different levels of how it effects each person. I hope you are better soon.

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Hi. I know several people who got it. The females found out after having a baby or two. Make sure you use birth control because each pregnancy can make it more intense is what my friend was told.
I read that lesions may not show up at first. It is very frustrating. They have to rule out so many things, then combine test results to tell if you have it. Then depending on your episodes, they will predict its progression. Do not let your health insurance drop and start paying via certified mail(costs $5).