Waiting for Diagnosis

[4kidsmum]

Hello everyone, today is my first day here. I'm as you can guess, mom of 4 children ages range from 18 to 8. I'm also a wife to a wonderful and long suffering husband.

I'm currently waiting to get an MRI of my brain and optic nerve. Long story short, I believe I have had symptoms of MS for at least 10 years. My doctors have dismissed my symptoms as everything from "you're just a tired mom", anxiety, depression, migraine, and finally fibromyalgia. None of these felt right to me.

I knew something else was going on. My level of slurred speech, cognitive issues, and chronic fatigue just wasn't right. Going to the grocery store shouldn't leave a healthy woman in her 30's shaking from weakness. Finally, two weeks ago, I had a terrifying period of three days of double vision.

Well that got me into an Opthalmologist real quick. After many tests the doctor finally sat Mr down and asked questions. Actually, she asked the question that I know has changed my life. She asked, "When you get out of a hot shower or bath do you feel tired or weak?" The look on my face told her that yes, that was the case. I told her, "Yes, is that really a thing?" She then told me it could be and for the next half hour I proceeded to answer yes to every question she asked.

I'm sure you're all familiar with the questions. Do you have balance problems, how's your memory, does your neck ever hurt when you bend your neck forward, does hot weather make you fatigued or irritable, how often are you to tired to do things around the house, how its your vision usually do you ever have periods of extreme blurry vision or partial loss of vision?

YES! I wanted to scream but instead I started crying because FINALLY someone was not only listening to my seemingly unrelated symptoms but she was taking me seriously and asking about my symptoms before I could tell her. I was crying because I was right and someone was listening. Then after apologizing for crying I asked what was wrong.

She told me she was referring me to a neurologist who specializes in MS and ordering the MRI. I have since been back to her for more tests to rule out any physical optical problem and have found that I have lost some field of vision in my left eye and also some color recognition in the left eye as well.

My MRI appt is set for next week and I'm basically waiting by the phone for the neurologist to give me an appt time. So I've been reading and reading and reading. I have currently or have had at some time in the last ten years just about every single symptom on the various MS symptom lists.

I don't want to have MS. I want to be healthy but I'm so thankful that I finally have people and Drs paying attention to my symptoms. I have thought for years I'm just going crazy and part of me is terrified nothing shows up on the MRI. I don't want to be relegated to just another bored stay at home mom hypochondriac. Which is basically how I've been treated for a decade.

So I wait. Wondering what is going to be worse , finding out I do have MS or finding out once again they can't tel me what's wrong with me. Anyway, I guess I needed to vent. I'm in such a weird place emotionally, relieved, terrified, anxious, hopeful.

I hope some of this makes sense to someone. I don't have any family I am close to or support other than my husband and a few friends that I don't want to burden yet with my ramblings. My friends I mean, not my husband he's been with me the entire ride and is very thankful I'm finally seeing a neurologist. So, right now this is me, mom and wife waiting for the phone to ring. Please feel free to let me know I'm not having a breakdown but that there are others of you going through the same thing. I hope you're not but selfishly I don't want to be alone in my anxious waiting.

Thank you for reading and letting me purge some thoughts out of my head.

[KitOP]

The journey that you have been on sounds frustrating for sure.

Many times people find health care professionals that just don't know what to do or what to say when you approach them with all these symptoms.

I'm glad that they are getting you in to see a neurologist. And no, you are not crazy! What you are experiencing is very real. The neuro will be able to do the appropriate testing and hopefully quickly give you an answer whether it be yes or no.

But please feel free to visit the site and post as often as you want. This is a great place to vent those feelings, we get it and can offer all the support that we can. We do care and we want to be here for you.

Hugs and good luck!

[Mamabug]

Welcome, mum.

Yes; none of us wish to have MS. But, you're right. It is nice to have someone paying attention to your symptoms. It will be nicer when you get an actual dx. Sometimes, that can be more of a relief than a burden.

Please come back often.

~ Faith

[4kidsmum]

Thank you for your replies. I'm really very thankful that there seems to be such great online support and information. I will keep coming back and keep you posted with my results. Yes, I just want to find out what is causing all my issues. Whether it's MS or something else, knowledge is power. Something I feel like I haven't had in dealing with my symptoms. Knowing the best way to handle the fatigue, the cognitive issues, my balance, pain and vertigo will be a tremendous relief.

[daraslyte]

i know how you feel i went through the same thing you are experiencing. All i can say is hang in there i know its tough because it doesnt feel good to not get answers for what you are feeling i will pray for you.

[malaholic]

Hi 4kidsmum -

Oh, how I can identify with your story! I just posted mine and came back and saw this thread, and what you've been going through sounds so similar. I got the same dismissals. It was just stress, or lack of sleep. Or I was lazy. Or it was just what happens when you get older. (Really? I was only 29 at the time I first complained!?!)

I'm depressed and upset at my diagnosis but still there's a part of me that is at peace with it because now I know. I wasn't imagining things, I was right when I felt things were wrong. And while I can't control what happens from here on out, at least I can take action and there is some relief in that.

Once you've had your MRI's please let us know how it goes. I won't say I hope you have MS, because obviously I hope you don't! But I do hope you get answers that will enable you to move forward.

[couponlady]

wauting for diagnosis....response

I toowas made to feel i was crazy. The first neurologist i w
Saw was fresh out of school. I had made a list of symptoms from doing research.he got down to the middle of the page. He told me..."i think you are looking for things that arent there." i wanted to smack him in the face. He wanted to send me for an EEG of my hands saying i probably have corporeal tunnel. I didnt do that test cause i new it was wrong. He also sent me for a lumbar puncture. The test came back tgat my proteins were elevated. Thst shouldn't be. It is a marker for MS. I switched doctors immediately. He didnt poopoo my symotoms, but said he couldnt say

It wad MS until i had a more definite symptom. So that summer 2008 i began to loose the sight in my left eye. I went to 3 optimologists and they couldnt find anything wrong. I have toxoplasmosis and have vision loss in my right eye. That wad not active, thank God.so i called my neurologist, thinking i am crazy, he said to come right in an thats when
He gave me my diagnosis.

Put me on steroids and my vision returned. I started copaxone, i was on it for 5 years but was having too many severe reactions, and sttarted avonex. I have been on v it for 9 months and dont like it. The flu symptoms knock me down for a few days. Decided i dont want to do them anymore. So whats next? I dont know.

It has taken my husband many years to kind of understand . our marriage was very rocky and i had to leave him. He finally started to listen and i moved back home, but it is still an issue. Especially when it comes to sex. I have no desire and my girly parts are either numb or sore.

I just wanted to let you know that you are not alone. I could go on and on, but i wont.
If you need so meone to talk to i am here.
Wishing you well and hope you are better soon.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **