Have no idea what on earth is going on with me or which forum I am to post under. Have been posting here every now and then over the last five years. The list of symptoms continues to increase. Feel like I'm a train wreck waiting to happen! Body is falling apart. Afraid of driving- not just due to the two nasty drugs the neurotologist has me taking but due to the severity of the symptoms...

Question 1) How many of you had severe vertigo when you first were dx'd?
2) Blurry/Double Vision? Daily?
3) Either wake up with chronic fatigue (so severe you feel like you
have ran a marathon 5 times. Or it begins in mid afternoon
after you start to do things or run errands/exercise?
4) Problems trying to urinate?
5) Problems walking/balance- other than vertigo.
6) Severe Migraines (MAV-dx) with inner ear dysfunctions
7) Two clear MRI's in last 3 years
8) Current regular Neuro and Neurotologist sending to dizzy clinic.
Gave symptom list to secretary. Instead of setting up appt. in
3-4 month normal appt. time- she put me on the current asap
waiting list. This freaked me out.
9) Sense of smell is almost gone. No clue with this one.
10) Tremors/numbness in hands. No clue what tests results came
back for sure as been told opposite things from two doctors.

Any advice? Feel like I'm clueless: really. No idea what is going on and no one will give me any answers. Very upset. Hubby is very angry with life like this- he has had it. I am not able to function like a normal person anymore. Basically- I'm disabled. He is having a hard time coming grips with it. I'm not sure that it will ever be back to normal again and if not, if he will accept it.

They all sound a bit familiar...What has your neurologist said?

Hi Coffeegirl

I am so sorry that you are going through all this. It sounds really awful, but lots of things sound familiar to me too. I hope that they find something definitive for you. The monsters you know are far less scary than the ones that you dream about.

As far as your husband goes, he is probably scared too. Face it, who wouldn't be? Will things go back to normal? I don't know, but then perceptions of normal change over time. What I do know, is that you need to keep searching for answers and I hope that you get them.

Keep us posted and take care of both of you.

Lyn

I am so sorry life is sucking right now. As much as I would love to say "hang in there" I know your frustrations. As far as hubby goes, well he is human. He is probably just as scared as you are, and just as frustrated. Whether he makes it through this storm or not is something only time will tell. I was one of the fortunate ones who went in for one thing and was dx within 2 weeks. And I am honestly still amazed that DH2B has stuck around for it all. We had only been together for a little over a year when the dx hit, along with all kinds of other smacks in the face that life decided to throw at us.

I am not working, have not been since jan 09. And he is still here, and he is the one paying all of the bills, and I know it gets to him sometimes. He gets frustrated and he gets annoyed. But, he also sees what my body is doing to me and he tries not to be a jerk (though he has his days). But I have my days too. It's emotionally draining when your body doesn't want to work, especially when you find you are unable to do anything. Some days I feel like I have lost myself in the last 2 years, all of the things that once defined who I was have all but vanished.

Lynn had a very good point... Perceptions of normal change over time.For me, normal was getting up at 5am, dropping DD off, heading to work, not getting home until after 6pm, cooking, cleaning and doing it all over again the next day. Weekends were devoted to entertaining friends and family and obsessively cleaning. Now, a normal day, or a good day is having the energy to go grocery shopping and i have to plan my entire day around this. It sucks, but it's about trying to adapt. Changing isn't easy. Me, the OCD Cleaning lady... you would be shocked to see my house most days and I am here all day! But I have learned to enjoy other things in life a lot more; spending time with DD, the ocean, hanging out with my mom.

As you may have already found, it's times like these when you learn who your real friends are. And that can be very sad and very lonely. I had all kinds of friends before MS. Now I can count my true friends on one hand. I can say that my few friends are more of a family than my real family. And although she pesters me to death, i have a great mom who is there for me all of the time.

I do question why there were only 2 MRIs done in the last 3 years. I have an awesome neuro who likes to "see" what is going on. I went in for #22 yesterday and have #23 and #24 scheduled for tomorrow. Mine may be different because she is suspecting PPMS, and we keep changing meds in hopes of finding something that will slow it down. Plus I have the broken bones thing, and the other stuff going on in my spine that needs to be looked at. but still. Even if it is not MS, there is obviously something going on... start hounding your doctors. If they can't get you answers, ask for referrals to people who can. Don't sacrifice yourself because you don't want to hurt their feelings. It is not worth it.

I went years being told I had "migraine syndrome" and loads of weird sx. After several more years passed, my lesions lite up on the MRI. I had lesions before hand, but the tech felt it wasnt enough to qualify for a dx, and listed it as WNL or within normal limits, and my MD dismissed me as a whiner.

I do hope you are able to find the answers you seek.

My answers are above in red to the questions I could relate to.

MS is hard to diagnose and at times it seems like they're never going to figure it out. You're not crazy and it's not all in your head. Some doctors will tell you this when they don't have an answer and don't want to appear dumb.

Are you seeing a Neuro that specializes in MS? Is there an MS Center near you?

Thank you everyone for your replies, suggestions and comments. It is very helpful and much appreciated.

Ironincally, the regular neurologist where I have been at over the last few years is a neuro clinic where they treat MS- a specialty clinic for MS patients. And I have resquested more MRI's numerous times and have been rejected each time. Why? Because the OTHER TWO- LOL - both were 'clear'. ugh! Ironically, since the last one all of the symptoms have severely progressed. ALL of them. DH tells me all of the time it is like I dread getting out of bed every day- he thinks I don't want to live due to our family life. I tried to explain it isn't that. It is how physically/mentally I feel and how it has taken a toll on him and our children/family life. DH is trying to understand more now. He is constantly asking me to take breaks if I feel tired or severe vertigo, etc. But I don't anymore due to fear of making him mad. Or having friends/family show up and seeing our house look like a wreck.

Today I woke up and wasn't able to 'get out' of bed. My son had an appointment for allergy shots. He had to actually drag me out of bed to just drive him to the appt. That is not normal for me. It was humbling. I felt so sorry for my son. He is understands. He knows something is not right with me. I talk about it with my boys. And I tell them how sorry I am for ruining their summer we had planned this year. It just agonizes me knowing I haven't been the mom I wanted to be this year. grr

I didn't realize but i missed other symptoms that I forgot to write down from above. The list is endless. All I know- is I literally think I'm losing it!! Ugh

Need to get some things done- Hope I am able to get some things done today. HOPE! Yes- I live off of that word daily. It is all one can do.

Love you all. Thank you for your kindness. I will keep you posted on my 'radical medical workup' that still continues to linger on. Hope someday they will figure it out. My luck- They will keep telling me it is all in my head.

Coffeegirl