It's island time -limbo check in 6/19/2012

[minivanmama]

Good Afternoon limbo island! Wow we are in our new home here on MSWorld. Thank you everyone who made our new forums.

There is a cool brezze blowing and the water is great. What a great time to vist the island. Grab a cabana boy or girl and order something to eat and drink. Grab a hammock and tell us how you are doing.

How are you this week? I know last week was hard for many and i hope this week is better.

Any doctors apt this week? Any tests this week? Any doctors or nurses that need to swim with the sharks? Any one need to scream?

In island news - Welcome to all our new islanders. I am so glad you found us.

If you are undiagnosed then this is the place for you come and tell us your story. The island is waiting.


Well i am off to my hammock to rest. I will check back in later. Lots of (((hugs))) everyone.

[thewildrose]

I'm Scared

Dr says file for disability - waiting to hear from neuro - dh is not happy with me (i've been the paycheck) - have a 2011 beautiful Mustang I've been in love with that is for sale cause I haven't been able to drive her for 3 months - a house in a perpetual state of renovation because I could pay to start it, but not to finish - and now will have pay reduced most likely - pain, tremors, can't walk or talk - and nothing makes sense to me anymore

thank goodness for all of you

[JayEm]

I'm sorry you're going through such a scary time right now, thewildrose.

This is all very frustrating. I think about things like my student loans--when I got those to pay for an education that I wanted to make use of, the plan was to be able to work to pay them back. Now I'm neck-deep in debt for an education that is slowly leaking out of my head because my brain isn't working any more.


Right now, I'm reminding myself that I feel horrible for several weeks, sometime between May and July of every year, and it generally eases up. I am holding on to that thought, because right here in the middle of it, it's pretty miserable.


Not looking forward to the weather tomorrow, that's for sure: supposed to be up in the high 90s for a couple of days. I think I will spend as much time as possible hiding out in my room with the air conditioning.

[lusciousleaves]

Wildrose, those are some very unwelcome changes, not just for dh, but for yourself as well. I'm so sorry you've been thrown into this at such a fast pace.

Had bad pain today, diaphragm spasm and abdominal. The two combined felt like my entire mid-section and back was in spasm. Tried all the of fixes and after about four hours, finally it started to subside. There went my day. The rest of it was spent sleeping. Not sure why that's such a tiring experience, but it is for some reason.

Anyway, finally got in the garden and have it looking picture perfect. Hubs and son are feeling neglected since I've spent the last two weeks working on my wants or sleeping. Now it's time to work on theirs.

Appt. with doc tomorrow to go over GI tests. Will see what he has to say about this diaphragm spasm thing.

[thewildrose]

Thank you

Thank you all for the understanding.

I am so sorry JayEm - it has too be really frustrating. It's going to be 90s and humid here also - I planned to stay inside in the geo, except maybe if dh will take me to pick up a book they took to the desk for me at the Library. However, my neuro wrote and said he needs to have an urgent appt with me to fill out a lot of paperwork - stated we need to get my MS under control. Do I have a dx? I am waiting for that call today and hoping to see the neuro by days end.

Lusciousleaves - I hope your day goes a lot better today! I have a question - what are the diaphragm spasms like? I have this weird thing where I start taking short breaths - almost like panting. It happens out of the blue and the dr could never figure it out. I did decide it may be some kind of weird tremor since it almost always happens at rest.

Some days, it seems we just have to find happiness in doing what our bodies want us to, I guess - it stinks, but I think I am learning to just go with the flow. Okay - I'm trying - I think I need to figure out where the flow is going first - haha

Have a good (cool) day everyone!

[JayEm]

It is hard to go with the flow, isn't it?

Thewildrose, it sounds both scary and maybe hopeful that your neuro sounds like he's got a diagnosis. Good luck with that, and with getting some rest and relaxation.

[lusciousleaves]

Wildrose, good for you getting a proactive GP that's willing to fight for you to get treated. Sending good thoughts your way on getting this figured out and treated, pronto.

How can one describe a diaphragm spasm? It's basically a big charleyhorse. It feels like someone has their fist up under your ribcage squeezing and twisting with all their might, or like being punched in the solar plexus, only it comes on more slowly than a blow. It's like getting the wind knocked out of you.

It's right up at the very base of the sternum, a big, incredibly painful squeeze that involves all of the lower ribs and sometimes radiates right through to the middle of the back. If it gets strong enough, it makes me sweat, shake and hyperventilate. I've found that ice water calms it down almost completely within a minute or two.

I'm still having them today, only not as bad. GI study was perfectly normal, so no GI issues contributing to the spasms. We now have that ruled out.

Doc thinks it's c-spine related. He also thinks I need to be more proactive about this neuro stuff and get in sooner than my next scheduled followup. Problem is, I can't see the neuro until August, only the nurse practitioner. This is too complex for the doctors. Nothing like overwhelming a bright, new NP with my complexity. I hope she likes a puzzle.

[gomer]

Hi MiniVanMaMa.......

............Guess we are neighbors now.

thewildrose +,
.......... Sounds like a formal MS dx is just round the corner, If so, please join us at Rest Area 51 / Newbies Lounge. You will feel at home with us, Both Limbo Island and Newbies Lounge are very similar in style.

Gomer Sir Falls-a-lot

[minivanmama]

It is good to see everyone on the island. I am glad that everyone found us.

Thewildrose - Good to see you. It sound like you are close to a dx. It can be scary but also good at the same time. Keep hanging in there and let us know what the neuro had to say.

I am so sorry that it is all hitting you all at one time. I am glad that you are posting and are here.

Lots of (((hugs)))

JayEm - Good to see you. Yes it is hard to go with the flow.

Keep hanging on to the the thouught that it will go away soon. Being in the middle of a flair up of SX is miserable. Keep hanging in there. We are here for you.

It is in the 90's here in georgia this week. Be careful and stay with the air conditioning.

Lots of (((hugs))) and get to feeling better soon.

Lusciousleaves - Good to see you. Glad your GI test came back normal. One more thing to rule out.

So glad your got your garden done. Way to go. Now you and the family can enjoy it.

Glad your spasms are better. Yes spasms are tiring. I have been have bad bladder spasms and i spent all day yesterday sleeping because they kept me up the night before. So i know the feeling.

I hope you can get in to the neuro. I hope the NP will be able to help and maybe she can get you in to the neuro sooner. It can be hard to go and see the NP but it is worth the try.

Lot of gentle (((hugs)))

Gomer - (((hugs))) will post to you on your thread.


Well i am off to run around with the kids today. We are going to get my 7 year old some frogs.

I am feeling better today. My bladder is still mad at me but it did not spasm to bad last night and keep me up. So getting better.

(((Hugs))) to everyone. I will check back later.

[thewildrose]

Formal Dx

Hi MiniVanMaMa.......

............Guess we are neighbors now.

thewildrose +,
.......... Sounds like a formal MS dx is just round the corner, If so, please join us at Rest Area 51 / Newbies Lounge. You will feel at home with us, Both Limbo Island and Newbies Lounge are very similar in style.

Gomer Sir Falls-a-lot

Hi Gomer - nice to meet you! and hello to all of my Limbo Island friends - just letting you know, I suppose I need to hop on over to the newbie site now and research a treatment - I've been formally diagnosed. It's a weird feeling - 12 years of symptoms and keeping on - it's good to know I'm not crazy after all - but still a little unsettling to realize it's real.

I hope you all get a dx of whatever it is so you can know and love you all for all the support!

[lusciousleaves]

MVM, hope your youngin' enjoyed the frogs. They're so much fun. Glad to hear you're feeling better.

Wildrose, sorry to be losing you in limbo, but happy you have an answer and can move on, finally. You've waiting a very long time for answers.

Gomer, you're such a thoughtful chum. I love it when you pop in on the limbolanders.

Update on the diaphragm thing - ended up going to the ER since it worsened again. They found my liver enzymes slightly elevated. Strangely enough, hoeing weeds in the garden seemed to lessen the pain. I had to keep moving, or it just kept getting worse.

They're thinking it is/was a gallstone or other blockage. I have to followup with a GI this week and call or go back if it worsens.

Today, thank goodness, it seems to have resolved, finally. This is the longest, most intense stretch of that pain I've experienced to date. Would rather not have to repeat it in the future. Good riddance!

[Strhuntrss]

Limbo for now

Limbo for now. Wish I could get some relief for these legs of mine. I am dealing the best I can with the eyes and driving but my legs are the worst. Neurontin and ultram are not working like they should. i know I am on a small dose (Neurontin-600mg, Ultram- 100mg)but thinking cutting the legs off would give me relief alot faster. Short term memory is shot again. Guess this too shall pass. Even if I go from possible to a diagnosis, what would that accomplish. Limbo it will be for now. Just frustrated and sleepy learning to life with it. Thanks for listening.
Grrrr

[JayEm]

Lusciousleaves: I'm glad you're feeling a little better. I hope the pain *stays* away (at least for a while!).

Strhuntrss: I'm sorry you're dealing with so much pain. Hopefully, it will pass soon, and you'll be able to be a little more functional.

As for me, I got the second EMG (with this neuro--he didn't completely trust the results my physical therapist had sent) over with today. It was, fortunately, not as bad as the one on my arms. Even better, I think the numb areas on my legs helped it to be a little less painful. I hadn't thought they went below skin deep, but some of the time, I couldn't feel anything but the twitch. Of course, there were also painful moments, but there were fewer of them. And he didn't do anything to my face.

And the results... were just what I expected (no peripheral nerve damage, no pinched nerves). Which is fine, and I'm glad I was right that the problem isn't actually in the periphery. I just wish I hadn't had to go through 40 minutes of electricity being run through my body for the doctor to confirm that.

At the end, the neuro was saying, "Well, we can see that there's no damage to your peripheral or central nervous system..." and I said (all casually) "So you think I don't need a spinal MRI?"

He actually looked surprised, and said "Didn't you have one?" Nope. He looked through the records... and, nope, no spinal MRI.

So he ordered one, and I'll wait two weeks for it to be approved by my insurance, and hopefully get the results before my follow-up appointment with the neuro in a month.

[Strhuntrss]

Spinal MRI

Jay Em .... Thank you for the well wish. Hope your Spinal MRI goes well and you find answers.

[minivanmama]

thewildrose - I am so gald that you have answers now and can get the treatment you need. I know this has been a long hard road.

Let us know how you are doing when you can. Lots of (((hugs)))

lusciousleaves - He loves his frogs. I do like to sit and watch them. Thank you for thinking of me.

So sorry to hear that you had to go to the ER. Glad to know that it is better now. I hope you can find out what is going on soon so you don't have to go through that again.

Enjoy your garden. Lots of (((hugs)))

strhuntress - So sorry that you are in a lot of pain. I have leg pain and boy can it get you down. I told my DH one time i wanted to cut my right leg off.

I have a tens unit that i use for my leg pain. It helps big time. I would ask your doctor if they think this would help you also.

Keep hanging in there and keep on posting. I hope you get to feeling better soon. Lots of (((hugs)))

JayEm - So glad that your EMG is over. I hate that test. I glad that you ruled some things out.

So glad that your neuro is going to do the spine MRI. I pray that it will give you some answers. Hope you can get it done before you see the neuro next.

Lots of (((hugs)))


Ok time for a new thread.