Okay, so hubby won't talk to me now.

[carrie235]

Hi Everyone:
I feel like I'm going crazy.  I think some of you know my story, but I have 20 lesions on brain with all other tests coming back negative.  I told my husband the other night that I think the doctors are missing something and that I believe I might have MS and he blew up and refuses to talk to me while I think that....sorry, this is personal but I'm quite upset.

I hope you all don't mind, but I would like to run my symptoms by you (the ones I can recall) and see what you think:

-  In March I developed major anxiety along with numbness/tingling under left eye.  Then a few days later, my legs/feet were vibrating/tingling, etc.  This went on for about three months.  At this time, I was put on Prozac for anxiety and all my symptoms dissapeared.

-  During that time, for about a week, I was getting a tightening feeling around my bra strap area.  I had had my gallbladder removed late January so I wrote it off to being something about that.

-  Also during this time, for about two weeks, off and on, I was getting vibrating feelings inside my upper body area.  That was strange and scary.

-  Late July, I went off the Prozac because it gave me acid reflux.  Slowly, the symptoms are returning again along with my anxiety.  I have a slight vibration feeling in my left shin and especially notice it when I get anxious or start worrying.  

-  For the last couple of months, my feet/ankles hurt when I first stand after sitting or sleeping all night.  I went to my orthopedic doctor about this because I'm playing a lot of tennis and thought maybe I hurt something, but xrays showed nothing.  Is this an MS thing?

-  I'm feeling a little tingling back under my left eye again the last few days but then again, I've been worrying like crazy again.

-  What in the heck could have caused 20 lesions on my brain????  This is driving me crazy.

-  Urinary....I drink a lot of water but when I gotta go, I gotta go....

-  My eyeballs.....for example last night while watching tv, I felt for just a minute like someone was twisting my eyeballs in the back of my head.  Ouch!  No problems at all with my vision.

-  Every couple of days, I get sharp shooting pains in my upper right leg.  They only last for a second, but they sure grab my attention when they happen.  They keep happening for a couple of minutes and then just go away.

-  I have NO muscle weakness...

Okay, having said these things, my first two neurologists told me that this is all anxiety (they did not know about the 20 lesions though because I hadn't had the MRI).  

Am I going crazy or if it were you, would you pursue this further?  I'm supposed to have a follow-up MRI in 6 months.  They didn't do an MRI on my T-Spine and I feel like I want one NOW.  

I'm fretting because I keep thinking what did I do to cause this to myself.....  I just feel like crying.  By the way, I'm peri-menopausal so I don't know if this could be affecting my symptoms or not....

I'm sorry for my repeat postings of the same stuff, but I feel like you people are the only people I have to talk too.

Please give me an honest opinion of what you think about my symptoms and if they sound like symptoms of MS.

[COBOB]

Carrie, I don't know a nice way to say this, so I'll just put it out there.  You and I are the same age.  My partner is 17 years younger than I am.  My partner is dealing with my fatigue, twitching, loss of feeling, confusion, etc. by coming to me and asking: "So, do your doctors have a clue?  Do I have a clue?  What are your limitations today?  Are you going to make sure you tell me when you can or can't do something?"  "I have been told to ask for help when I need it, and not to do something that might even remotely result in injury."  Pretty mature response for a 31 year old.  I mentioned that I had to take Valium before my MRI and the response was "OK, write down the address so I don't get lost and have you there on time."

My partner is scared.  Guess I am too, but more frustrated.  Maybe you are in the same boat. Maybe you have talk to him about where you are at and where he is at.  It's rough for guys, because we don't verbalize fear. We have a tendency to get aggressive towards  (read that as attack) those the make us fearful.  Hard to attach a disease or unknown disease.  For men, it is pretty hard to "cowboy up and grow a pair" when it comes to dealing is sickness or chronic disease processes.  I'm speaking as a guy that spent a few years in heath care watching what went on around me.  

I hope you can get him to open up a bit.  I'll bet he is frustrated about a disease and all the hidden symptoms he can't see.  He really wants it to be "in your head."  That would be easy to cure.  I bet he is terrified that you have something that just strikes fear in him.
He's worried about you, he's worried about him, he's worried about the two of you.  That mush worry will wear him down just like it wears you down.  Communicate, get a therapist... do what you need to do for the two of you.

Just my male point of view.

Bob

[carrie235]

Thanks everyone for all your support.  I really appreciate it.  I've not having a good week with my emotions...feeling very scared which I think is making my symptoms worse.

Bob:  Yes, my MRI and all my tests were done at UCSF.  I don't think I understand what you mean by "desimation of time".  Can you explain that a little more for me.

My symptoms come and go almost every day.  Mostly I notice them when I'm anxious or upset and I've been that way all week this week.  Today, I'm having cramping in my left thigh.   Is this MS?  OMG....this is driving my crazy.

Please tell me....with MS, do you normally have symptoms for a week or so and then have them completely go away and be symptom free for a while?  If so, I don't think I'm having that because I don't think a week has gone by since March where I haven't felt "something".

I slept for like 9 hours last night and feel absolutely exhausted today.  Is that MS?  see....this is how I am right now...every little thing.....it's driving me crazy.  I'm driving myself crazy.

Thanks again.

[summerluvr]

If your husband is not the best support for your appointment can you bring another friend or family member?  Sister, mother, broher?  when I got diagnosed I was alone and it was scary and shocking for me.  From then on I traveled with an entourage of my, then very pregnant sister, my boyfriend, brother in law, and when she got back into the country, my mom, to my appointments.  I am now just back to travelling to appointments with my boyfriend, but anything "big" I call in additional support.

I've seen about every type of _ologist, and my exeprience with neuros is the worst.  Most of my other specialists were willing to refer me and admit they didn't know.

[Sumanadevii]

Sometimes we are the ones not communicating with our spouse.  For years my husband heard the words "my back hurts".  After hearing it year after year he no longer heard me.  It was like...."okay another night and her back hurts".  The real problem was I blamed myself.  Some how it became my fault that I couldn't keep up.  I must be out of shape.  I didn't work out enough.  I wasn't strong enough.  I was a big baby about pain.  On and on I piled stuff on myself.  My fault.  So because it was my fault, I kept pushing myself harder and harder.  

Until...until that one night I could no longer push.  I could no longer pretend.  I had been trying to shop for the holidays for my children.  I could hardly stand.  I made myself walk into the store to walk out in three minutes because my back hurt.  After about the third store, I burst into tears in the car.  My husband was shocked that it had all been so painful and finally understood.  Trying to make it better he offered to get a wheelchair.  So, right there in the Walmart parking lot ...this woman that blamed herself let all those hidden emotions out.  I cried so hard and so long and lovingly my husband held me.  

From that day on (and it would still be another four years until we had a dx)  my husband understood.  I think we have to be sure we are communicating and not just dropping "hints".  There is a huge difference between "my back hurts" and "my back hurts and I am scared".  

[willowwoman7]

I never had a LP...My lesions were "classic" MS lesions along with the symptoms and later confirmed by the head MS doc at Cleveland Clinic, so I don't know about the O bands....But, your husband's reaction is clearly fear. He loves you and is afraid for you. Some men just can't handle their wives dealing with something they can not protect them from. So maybe it's not that he's being a jerk, he's just frightened. My husband asked me if I knew I had MS when I married him! But now, even with his illnesses, he shows concern for me in the ways he can...like not griping about dishes not getting done, or slow on the laundry, or my having to stop and lay down. Give him time...

[Fluffysmom]

Hello, Carrie,

I've been through "anxiety, depression, chronic fatigue syndrome, fibromyalgia, stress, hypochondriasis, and more".

When my first brain MRI showed lots of lesions and the neuro-radiologist reported "far and away most likely to be multiple sclerosis", I had to step up being and proactive and learning how to work with doctors. Some, like car salesmen, respond better with a male in the room.  Others don't want patients that might sound like they know more than they do, or don't trust their word completely.  Still others are just right, look, listen, and think, figure things out, communicate well.

Lo and behold, I have MS, diagnosed a year ago, 20 months after that first brain MRI.  I also have some lower back/sacroilliac joint issues.

Have you had an MRI of your lumbar spine?  Some of what you describe about your legs/feet sounds very familiar.  We're the same age; have you had any lower back injuries or pain?  Just a thought.  Some of my lower leg stuff is from the MS, so it can be confusing.

They point I'm winding my way around to making is that you can have more than one thing going on. I'm trying gentle yoga and some meditation to deal with stress and anxiety that can go with having stuff wrong, as well as just to make myself feel better.

While your hubby's sitting around not talking to you, you could calmly listen to a meditation CD (headset on), or do a few simple yoga stretches (can you take a class?).

Take care,

Kathy