Calling all limbolanders-limbo check in 7/26/2011

[minivanmama]

HI limbo island! It's time to limbo!!!! Grab a cabana boy or girl and order something to eat and drink. Grab a hammock and tell us how you are doing.

How has your week been? How are you doing/feeling this week? Hope everyone is feeling better and doing ok this week.

Are there any doctors apts this week? Any test this week? Any doctors or nurses that need to swim with the sharks? Remember that if you need to scream to go to the middle of the island. Remember that you never scream alone.

In island news - Welcome to our new islanders. Be careful out in the heat.

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


Sorry this is late. The kids and i had a busy day. I am doing good and have not been to see the GYN in a week. That is good news. I think is can now see the light at the end of the tunnel.

My SX are acting up. My right side is week and my right leg is haveing problems with spasticity. My vison is going blurry when i get hot. I hope that it will stop soon.

Well i am off to bed. Good night limbo island and sweet dreams. Lots of ((((hugs)))) to everyone.

[Shashi]

Hi everyone,

I'm still waiting for the results of my VEP that were done July 15. I'm not sure what the delay is, but I've already called three times and heard absolutely nothing. I'm thinking of picking up the results (which haven't been read yet) and taking them to my neuro-ophthalmologist and seeing if he can give me the results.

I don't know what my neurologist's problem is (or her office staff or whatever), but I'm about over it and ready to find someone else.

Hope everyone else is doing well. And I hope you feel better soon, Ava.

Hugs,

Lisa

[Shallwearpurple]

minivanmama, glad you are feeling better since your surgery and staying out of the gyn office. Sorry your symptoms are coming on again.

Shashi, I would definitely get a copy of the results from the VEP. When I had mine though, the hospital didn't read them and didn't have a report until my neurologist read them and made the report. It has been long enough. I'd be angry.

I was feeling better after starting my B12 shots. I had more energy. My other symptoms were beginning to wane. I didn't have to take a nap every day. But over the last week, I've been going down hill again. I've had the flu like pain and fatigue return, vision problems return...
Well, the MS specialist said to give it 6 months, but seems strange that the shots seemed to help right away and then not.

I'm getting a shot today. Hoping it helps. I have stuff to do and don't want to take daily naps!

I see my GP again in September and the MS specialist in December if I'm still having symptoms after all the shots.

Blessings.

[photomama]

My neuro appt is next Monday. I'm nervous because I have so much to address. I'm sure she will understand, lol, as she usually does.

The heat is kicking my rear and summer fatigue has kicked in big time. Between that & my meds, I'm taking daily naps. I'm going to need to ask for some meds for it since we're going to up my spasticity meds (the ALA + ALC never worked for me). Yay for more meds *eye roll*.

I am feeling very discouraged right now. Some years I do ok and seem to not progress much, just maintain my same symptoms and others I have a progressing pattern. This year I've progressed a lot. I'm ready to fight this sucker! It is so much easier to keep my chin up and be ok about not fighting it when I'm not progressing.

Ok- enough of a whine-fest for me. Tomorrow is another day. One of these days we will prove what this is- at least to the point where we can confidently fight it.

[Lori Lee]

Hi All,

MVM sorry your symptoms are coming back but glad you are recovering well from your surgery.

Shashi that is a long time to wait. I would be so frustrated! I pray you have your results soon!

Shallwearpurple sorry you are going down hill after good results to start with on the B12. UGH.

I had my MS specialist appointment on Monday. The DR was awesome! I was told I haven't met the criteria for diagnosis (which I knew) but that I was suspicious for MS so I get to stay with her for awhile.

She has ordered a MRI of the brain (said current images weren't that great) this MRI is 1 year from the first. She has also ordered a VEP. both are scheduled for August 8th.

What encouraged me the most was that she said she didn't need a diagnosis to treat my symptoms. Hurray!
and ordered physical therapy for my balance and gait issues.

I didn't have to ask for this she ordered based on observation.

So still in Limbo but there is forward movement

Blessings,
Lori

[lynnepynne]

new here!

Hi everybody! I am new here so thanks for making me feel so welcome!
Lisa, I had been wondering about the results. yuckity yuck-yuck for more no answers

I feel like things are improving (today is the second day I didnt need a cane for getting around, yay! I feel much more strength in my legs and my balance is much improved) The general numbness in my right side is finally (*sigh* after 6 weeks) letting up.

Also the falling asleep/pins and needles/ (and sometimes just plain dead) right foot and hand was so bad at times I felt like a few fingers were literally gone missing! (as in non-existent, which was bizarre and scary) I so do not miss this symptom!! The now occasional tightness or numbness is totally ok for me!

The tiredness, though, is worse than ever (but also maybe because the kids are off of school and I feel like I have wild animals pent up at home gnawing on the furniture, lol! What would I do without their wonderful older sister and the public library!?)
But it does really tire me out: the constant communication/noise/activity. I guess I am just not that relaxed anymore.

Although I have been having symptoms for a while, these past three months have been just shocking to me. (all of the sudden so many "big" symptoms and everything all at once.) I am still trying to process it. So many questions.... So glad to be here on such a great site!

[Lori Lee]

I thought I would update. I went to physical therapy today and was trained to walk with a cane. Not sure about showing off my new skill.

She said I have significant weakness in major muscle groups on the left side. Balance issues as well.

I was given a few excercises and told to go get a cane and use it. Hmmm.

I have mixed emotions. On one hand I am glad that this has been addressed and its not just in my head but on the other it brings something rather private very public.....

So glad to have a place to share. Thank You all

[jkooba]

Perfect thread for me

I have an appointment with my neurologist on Monday. All I've had done so far is an MRI with and without contrast of my brain and temporal lobe which apparently came back normal. I am going to press her for spine and cervical MRIs and Evoked Potential tests. I have so many symptoms and have been doing so much research and everything brings me to MS. I even researched diseases that mimic MS and none of them fit, or they have been ruled out already. I've read that you can have a clean MRI and still have MS. I have definitely had neurological episodes with dissemination of time and space (did I word that right?). This has been going on for years and I am just now connecting the dots. Limbo-Land sucks.

[lynnepynne]

@Lori Lee: I got a cane three years to use "as needed" and I really like it. It was hard at first (emotionally but also physically getting the co-ordination and the strength in my hand up) but, after I shed the tears of needing a walking aide at 35 I was really glad I did get one! I really do need it at times. And it's ok.

When people ask (and oh yes, they sure will, even perfect strangers especially if you are very young) I always smile, say it a fashion statement or my newest accessory *wink-wink* and charmingly change the subject. Most people get the point.

Sometimes I am glad I have a cane for times I dont feel well also because it is one of the few things others can "see" to tell them I am struggling. People are a little more understanding and dont give you that "oops, someone's drunk in the afternoon" look.

[Lori Lee]

@LynnePynne: Thank You! I appreciate you sharing with me. I am 43 so I think I am young yet of course as I get older, old gets further away.

[lynnepynne]

LoriLee, we are still really young. (don't destroy my illusions please, lol!)

[jrswannie1]

Hey all, been awhile since I have come in but it's been a discouraging road. I have been trying to stay positive was much as I can. I came by because I just need to vent. As we know, nueros don't do the best at making you feel better. Only had 1 case of double vision this year but I think its being made up with the spasms. I usually get them in my arms but I have one in my left calf for 2 days now. Waiting on doc.to call me. And the cog fog...... I put the milk under the sink a couple of days ago and my wife found the box of ritz in the washer. I hate coming from the heat here in Az and then trying to have a conversation. My neuro says that I have lost 70% feeling on left side and scalp.

My curious question is when I got to do some digging, my right ARM feels like it just wants to dangle their. I lose accuracy and hands begin to shake. Would that be another sx?

Also have tingling in my fingers and my feet go numb a lot.

Mri showed 2 small lesions that were not specific and small. They did a vep, ver, and the shock one. All were normal but as I went through the results, all seemed to be high end of normal, like 2 or 3 from high. Nuero did not want to do a lp of spinal Mri despite me being determined. I just gave up at that point. So here I am still with numbness, spams, motary issues and no answers. Should I start pushing my doc again?


Thanks for letting me rant and gl all

[woodstock]

Since my first flare at the end of June, I have had no further symptoms or issues. I just found out today that I am finally being scheduled in to see a new neurologist on August 10th. This is a second opinion with a neurologist who works in and specializes in treatment of MS. My first neurologist really didn't tell me much about whether I was diagnosed or not...so I don't know.

My spinal MRI was clear, but the brain MRI showed five lesions (2 measureable) and there were less than five bands in the CSF.

[mackers758]

Hi there,
still waiting to hear about results from MRI i had last saturday. This week I've had a sensation that felt like someone was dragging some wire wool over my right eye for a whole afternoon. The following day I had sparkly lights in my vision.
I phoned my GP who suggested visit optician immediately or hospital, with thoughts of detached retina or acute glaucoma (?). Had eye tested and told my eyes are in very good condition. No explanation for blurred, double vision I have had for quite some time. Could this be a good sign and rule out MS?
The other night I had part of my head go numb. It was just behind and above my left ear and was about the size of my fist. Felt like it was numb and cold, but there was also a sensation that I can't describe. Even now it doesn't feel 100%.
Balance causing me to hold onto more things as a move around.

[Cmiracle]

Limbo land really stinks! I keep giving myself pep talks everyday to have courage and stay strong for family. I wish there was a simple test to diagnose MS. I feel so frustrated and this heat is not helping matters. Thanks for hearing me out, I am having a "self pity" day today. Think positive.