Limbo-land- on the journey again.. could use some friends who might get me...

[Heykathster]

Hello all!
I have been a lurker here for a few years on and off. And I've posted once I think. But I am a 35 year old mother of 4. My oldest child is 5! It's my claim to fame and usually makes people collectively gasp lol. I have to admit- the only daily perk of having them all so close together is the attention and the conversation piece! Aaaand I am a social chatter so... it works for me!
The rest of the time, I am truly and completely exhausted.

My husband is in the military- so I have done this "bizarre symptoms" and off to the neuro I go ordeal before. We were living in Spain last time- and there was no contrast or anything in the MRI, but the spanish neuro said I was perfectly normal. (Which made me believe that maybe I was crazy. I'm easy going like that. I decided to believe that I had anxiety or something...) I had been experiencing a little bee buzzing at the end of my nose for 5 months, tingly legs.. weird electrical zig zaggy pains down my arms..
But the neuro said that I was perfectly normal. So I carried on with life completely amazed at what anxiety can do to a person- especially if I didn't know I even had it! And I am still in awe at what the mind can do to a person. I am now much more open minded that's for sure! (Ha! pun not intended. But enjoyed lol.)

But.. fast forward another baby and another year or two...
And it's just all hitting me like a ton of bricks all of a sudden! My husband is an optometrist- and he thinks I have some form of hidden ON- (He described it to me this way...) because my eye sockets hurt so badly. They just kill! Whenever I look anywhere.. especially at the end of the day and especially while driving. Today they got a horrible migraine deep in my eyeballs. I have a jerky track (eyes..) and lots of really weird visual stuff. Which is just making me crazy. Especially while driving at night. (Like living in a video game. Or a creepy movie where they go to a carnival at night. Or how I imagine it might feel to be on LSD. That's me driving at night.)

And also my swallow broke! I mean.. we're talking food up my nose, in my chest. choking. It's been that way for 3 straight months. I have been working it out... but... That can't be anxiety right?
And then of course the chest pain... the ground moving underneath me sometimes. (My own little earthquakes it feels like..) And on and on.. so many things I almost cant name them all.

I feel like I am literally falling apart all of a sudden!!! All in the same 3 months. Ironically, we had a big military move during this time- and I was in a hotel room for 2 of those months with my 4 very young, very loud, very enthusiastic (and darling!) kids.... so... I don't know.

I have been lurking long enough to know how skeptical some of you are about newbies popping in on here thinking we know what we have. And, you know, I could even see how it could be strangely annoying to have so many people trying to steal your disease from you in order to explain our bizarre bodies! Maybe to some it is almost as bad as "Well you look fine to me!" lol.

But I don't have anyone to talk to about this except my husband. And he's gone at work all day. It would be nice to be reassured that I don't have an extreme form of this and that if I did have MS- these symptoms, all at once, are normal.

I just finally saw a doctor about my swallowing problems. And I finally saw the optometrist (ha!) regarding my vision. My husband wants to refer me to the neuro opthalmalogist.. my doc wants me to see a GI-neurologist for my swallowing, and a regular neurologist for the rest of it. So I'm on my way to see a LOT of doctors. Plus she is sending me for an MRI WITH contrast.

So my journey is beginning again with a brand new team of people. And here's how much anxiety I have... I'm just stressed about finding babysitters now that school is starting again soon lol!

Thank you for letting me say hi. I'm a pretty social gal- and I am chatting with people all the time... but "Hey how are you?" is never answered truthfully and so here I am- MWF, seeking friendships with people who have similar life experiences. And who do enjoy a good beach! (Navy! Woot!)

Oh, PS: I wonder if my family doc thought it was weird that I literally had zero reflexes on my knees or elbows? I wonder if she is maybe just super bad at the reflex hammer lol. And if so... can you still graduate medical school and completely miss all 4 reflexes?? lol! xoxo.
Cheers to you all. And may you find some sunshine and a reason to smile today.

[SNOOPY]

Hello Heykathster and welcome to MSWorld

I have been lurking long enough to know how skeptical some of you are about newbies popping in on here thinking we know what we have. And, you know, I could even see how it could be strangely annoying to have so many people trying to steal your disease from you in order to explain our bizarre bodies!

I can only speak for my self on this but it's more about an assumption that because internet searching brings up MS when someone puts in their symptoms that they must have MS. There are many other conditions that need to be ruled out, some can be done through blood work. There is no symptom(s) unique to Multiple Sclerosis.

If someone wants to steal this disease I would gladly hand over mine. I don't want it and never have. Multiple Sclerosis is not easy to live with and can be down right difficult.

We were living in Spain last time- and there was no contrast or anything in the MRI, but the spanish neuro said I was perfectly normal.

A normal MRI without contrast will be normal with contrast. Contrast will not show something that wasn't already seen on the MRI without contrast. What contrast does is "light up" currently active (inflammation) lesions, those same lesions would have been on the MRI without contrast.

And then of course the chest pain

This is not something to brush off as it could be something as serious as a heart condition or due to stress/anxiety. Hormonal fluctuations can also cause chest pain for some women. Please discuss this with your Dr. asap if you haven't already.

Best wishes on your diagnostic journey.

[Marie12]

I am sorry you are dealing with this physical/mental pain

The "Rain,Living Waters" band/music has really helped me. I never really knew that the MS would make me so handicapped/lonely. I am female, only 58 years of age. I do get around pretty well with my manual and electric wheelchairs.

I do notice that people tend to not include me in their activities. I still am able to get in and out of my wheelchair. I don't know how much longer that will be. It is frustrating at how fast this illness has taken over my life. I used to be the one who enjoyed helping others, but now I don't have enough energy to help. And I do see that I make people "nervous" when they are around me.

I understand they don't know what to expect. And hey, I was only sitting on the Church parking lot one time. I was getting into our car, from my wheelchair, and didn't have it close enough to the car. I hope I didn't upset too many. People were kind, stopping to help, ask to help. I was very embarrassed!

I am ok, didn't break anything. Whewwww, I guess my prayers really helped me. I don't know how I got through that without any fractures. And, I'm glad my pants stayed on. They are getting looser, and sometimes slip down. But I haven't lost that much weight. I'll have to start using my sewing machine again.

But I'd rather listen to my CD and type : )

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[tortis]

HI kathster

Just wanted to say hello and to let you know that you are the first person that has ever said one of their symptoms was no reflexes. I have the same thing and it drives my neurologist crazy, she says its not a normal M.S. symptom. Normal would be hyper reflexes in M.S. But even the doctors have to remember that the MonSter can pretty much give us any symptom since its our brains and nervous system. I was told it was "all in my head" for about 20 years. Well it turns out that was kinda true since most of my lesions are in my brain.
Well nice to meet you and I actually hope that what you have is not the MonSter but something they can fix easily and painlessly . Welcome

PEACE

Tortis

[Echo2099]

No reflexes...

Hi there!

Sorry to hear you're going through all of this! Especially with young children! Hats off to you!

Interesting about your reflexes, as since I was about 32, no doctor has been able to find my reflexes in my legs. Sometimes they can in my arms, but never my legs. Of course I am not sure this has anything to do with MS or not. I may be just a weird person.

I was diagnosed in 2007 with RRMS, after close to 20 years of clear MRIs and lots of odd symptoms. In 2007 the lesions showed up in both my spine and brain. Doc did a spinal tap, and was amazed at the amount of bands in the fluid.

I guess what I am saying is it can take awhile to find out what is going on. Lot of doctors do not want to make a quick diagnosis of MS because it can change so much in your life, including health insurance, life insurance, and employment. However, not knowing and not getting treatment as soon as possible is very stressful.

I hope the new set of doctors you're seeing will be able to get your issues resolved! And like others, I pray it isn't MS! This disease is a monster that steals your mind, body, and sometimes your will.

Let it us know how it turns out!

[Teekybird]

I have been lurking long enough to know how skeptical some of you are about newbies popping in on here thinking we know what we have. And, you know, I could even see how it could be strangely annoying to have so many people trying to steal your disease from you in order to explain our bizarre bodies! Maybe to some it is almost as bad as "Well you look fine to me!" lol. .

Personally when I read posts from the people in "limbo," I never feel annoyed by them. I feel badly that they don't know what they have. The symptoms are generally very much MS symptoms, but 'could' be something else. I guess since I ended up being diagnosed with MS, I have a tendency to read the "limbo posts" and think how frustrating it would be to possibly have MS and know that and not be able to move forward in treatment.


[/QUOTE]I just finally saw a doctor about my swallowing problems. And I finally saw the optometrist (ha!) regarding my vision. My husband wants to refer me to the neuro opthalmalogist.. my doc wants me to see a GI-neurologist for my swallowing, and a regular neurologist for the rest of it. So I'm on my way to see a LOT of doctors. Plus she is sending me for an MRI WITH contrast. .[/QUOTE]

These all sound like excellent recommendations. Optic Neuritis was what led to my MS diagnosis this spring. It felt like eye socket pain, especially intense when looking upward or to the right.

Lastly, as Tortis just mentioned, I think that people with MS generally actually have hyper sensitive reflexes. There is some reflex that they do on the arm that continues to shock me how much my arm jumps whenever they test it.

And as SNOOPY mentioned, get to an ER if the chest pain is concerning. You don't want to not get treatment if it is something cardiac related. There are types of chest/abdomen pain that are related to spasticity. I'm not sure if that is what you mean referring to chest pain. (MS hug) I haven't had this symptom. There is also a shooting pain that is typical if you move your chin down....the pain shoots down your back. (Lhermitte’s sign).