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ongoing neuro issues...sick and bored of it ongoing neuro issues...sick and bored of it

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Unread 05-11-2003, 06:17 AM
ongoing neuro issues...sick and bored of it

hello everyone!
I haven't posted in a while because I've been very busy, but now that I'm approaching a one-year anniversary, I started thinking again about my surgery and how I've been doing.

Basically I recovered well, but some systems seem to be going haywire now and are causing me some distress. My allergies are really bizarre: I often wake up with eyelid and sometimes some facial edema.
But more concerning are some neurological problems I've been having, which surfaced once I started becoming more active after my surgery. I have episodes of double vision, during morning exercise (jogging) (but not when I play soccer or exercise late in the day...); tingling in neck and midback; pain in my shoulder and down my right arm, now also some wrist tendon issues. I'm expecting that no real cause will be found for the double vision and I also think that my other problems are due to computer use (the mouse!) and I'm redesigning my work space and getting a new computer chair, so I hope that will help.

I've had a lot of tests so far. Fortunately the blood work has all been normal (I've been tested for everything, from autoimmune diseases to connective tissue disorders, thyroid, liver, B-12, myasthenia gravis, etc.) Brain and c-spine MRIs also basically normal , which "surprised" my neurologist, who said she saw some things in her exam of me. I have had visual evoked potentials and a spinal tap (which made me feel off kilter for days...) and go back next week to get results.

I think I'm probably OK, but I am unbelievably anxious and it's wearing me down. I had a panic attack last night in bed where I thought I was completely paralyzed and couldn't let my DH, dozing next to me, know that I couldn't move. I wasn't sure if I was dreaming or not..This kind of anxiety is not like me--I hope I can get past all this and move on. It's starting to put a strain on my marriage too...My DH and DD tend to be hypochrondriacs and I balance them out by being matter-of-fact; now I'm obsessed with symptoms and it's freaking them out....

I'm so glad there is a place like this to share my feelings...I'm sympathetic with all of you going through bizarre repercussions of this surgery and hope we can all find some peace....

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Unread 05-11-2003, 11:11 AM
ongoing neuro issues...sick and bored of it

Hi (((Clare))), I'm glad you posted, I was wondering how you were doing. I understand what you mean about having to be matter of fact, I'm the same way... and I'm so happy you have this place to 'let your hair down' about your symptoms and how you're feeling.

I'm assuming you've ruled out hormonal causes for the symptoms? The reason I ask this is that when I am a little low in estrogen, I get a little anxiety, plus some of the tingling and pains, but no actual "hot flashes", so it's taken me a while to be able to recognize it for what it is. I've been on the same estrogen dose for about 8 months now and just this past week started having some of those familiar feelings, so even at more than a year post op it's possible to have to make adjustments. Maybe your hysterversary is a good excuse to have your hormone levels checked, if you haven't already?

Hang in there, sweetie, and it's good to 'see' you again!
Unread 05-11-2003, 12:13 PM
ongoing neuro issues...sick and bored of it

I'm so sorry my friend! For some of us it does seem that the hyst was only the beginning instead of the end of our troubles. I've recently developed a problem with dizziness and a whooshy feeling, but so far all tests are negative. I have to go for a brain MRI on Monday. I've also developed twitches when I'm feeling poorly.

Even though you may think tests will be negative they still are necessary. You never know when one will maybe just maybe show a cause and than perhaps the doctor will be able to provide you with some relief.

You really should let your dh and dd know what is going on. I'm also one who always thought I needed to be strong and kept everything inside. My dh couldn't help me if he didn't know that anything was wrong. Since I've opened up about how I'm really feeling he's been absolutely wonderful. Perhaps it's time for a heart to heart chat with the family.

Your sisters are here for you Clare! We really do care.
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Unread 05-12-2003, 09:17 AM
ongoing neuro issues...sick and bored of it

Hi My dh had bypass 2 years ago and last March his nerve in his chest area started acting up, he is getting better but is miserable when that nerve acts up. His neuro said that he could not do anything for him because it is a thoracic problem. So he will go to that doc. But I guess nerve can be very hard to take care of and diagnose. So I hope you feel better soon. Angie
Unread 05-12-2003, 11:18 AM
ongoing neuro issues...sick and bored of it

thanks everyone for your replies and suggestions. I am trying not to get unduly anxious about all this. I just suspect that the neuro suspects MS in me. She's been guarded so far in her comments, but said that she has seen this weird array of symptoms in people in their '40s and '50s and that MRIs don't always rule it out. MS is a truly difficult disease to diagnose, I guess. That's what she's still testing me for, even though the MRIs are basically normal (I do have some disk issue in my neck but nothing unusual for my age apparently). She did also tell me that in about 20% of cases, no case is found for cranial nerve palsy (which is likely what I have...)

She and my allergist ruled out hormonal issues as the problem, but I'll be seeing the gyn who did my surgery at the end of this month for a check-up, so I'll be sure to swamp him with all kinds of questions. I want to try switching to a patch just to see how I do on it. Maybe some of my aches and pains are due to different hormonal balance, who knows....

Thanks for your comments, Kim--I actually did have a long chat with my DH and basically, he's feeling that I've been ignoring him somewhat, which greatly surprised me! But I guess I have been kindof self-obsessed. He's just a little hurt, and also worried.

In the meantime, I'm not really doing that badly at all and I think if no definitive answers are found from this next series of tests, I'm going to "quit while I'm ahead" at the end of this month, delete my bookmarks to medical sites, and try to distract myself in other ways!

best to all....
Unread 05-12-2003, 11:42 AM
ongoing neuro issues...sick and bored of it

Hi (((Clare)))! I know you said you were going to delete all your links to medical sites, but I thought that given your last post you might want to check these out first . MS studies are suggesting that estriol (at this point only oral estriol has been tried, but I would think it would be the same for transdermal) greatly improves the symptoms of MS. Since you're contemplating switching forms of estrogen anyway, you might want to consider adding some estriol to see if it helps, either by using a patch with oral estriol or estriol cream, or by using either oral or compounded bi-est cream.

Also, in this last link, they mention that a reason men don't get MS nearly as much as women may be due to their higher testosterone levels:

Have you had your testosterone level checked, and is supplementing with that something you'd consider to see if it would help your symptoms? Just a thought.

Sounds like your DH loves you very much... s to you both,
Unread 05-13-2003, 07:27 AM
ongoing neuro issues...sick and bored of it

Wow, Linda, thank you...what interesting information. I will definitely bring this all up to my doc next week!

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