Calling all limbo-landers limbo check in 9/27/2011

[minivanmama]

Good Afternoon limbo island!! It's time to limbo! The sun is out and the water is great. On the island you don't have to worry about the heat. So 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 doing /feeling this week? I hope that everyone is feeling better this week.

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

In island news - Welcome to all the new limbolanders. I am glad that you are here and know that you are not alone as you look for answers.

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

rsb - Welcome to the island. I have had cog problems like you are having. They can be very scary when they happen. Just know that you are not alone.

I hope your head if healing well. Your doctors sound like they are on the right track and doing all they can to get you answers and treatment. That is great to have a good team of doctors.

I wish i could help you with your question. I hope others can help. I am glad that you posted and let us know what is going on.

Lots of ((((hugs))))

Shallwearpurple - Good to see you. I hope the next round of test will get you some answers. I am glad that the b-12 does help.

I hope that your sx will keep feeling better as you space out your shots. Let us know how things go.

Lots of ((((hugs))))

browneyedlana - Good to see you. I am sorry that you are getting the waiting game with your doctor. I know that is a pain and is hard to do. I hope you will hear from them soon with some answers.

It is ok to vent here we all understand. I am glad that you came to the island. I hope your migraines will get better soon. Enjoy the island.

Lots of ((((hugs))))

jskmssss - Good to see you. I glad that you came to the island. You sound like you are on the right road to getting some answers.

Let us know how you your next round of tests go. I am praying that you will get answers this time. Keeping hanging in there and keep on posting. We are here for you anytime you need us.

Lots of ((((hugs)))


Well i am off to get kids of the bus. I will check in later to see how everyone is doing. Lots of ((((hugs)))) everyone.

[derrie]

Hey limbo--

Hope all is well (or as well as it can be) with everyone. Had my NCS/EMG last week (I think I mentioned that; can't remember), and it was normal. And pretty uncomfortable. But the neuro and the nurse were super sweet and supportive. The bruise on my foot from the EMG needle just won't go away, though...

On a seeming lark by my neurologist, I am trying ropinirole (Requip), a Parkinson's drug that affects dopamine in your brain that is used to treat Restless Leg Syndrome. My legs are not restless -- just painful -- but I am happy to try anything at this point. Predictably, though, like every other medication I've tried, ropinirole hasn't done anything. It's like taking a sugar pill.

My neuro assures me he won't give up on figuring out how to "fix" me. My next appointment is in a couple of weeks. He promised me a lumbar puncture. Eww.

[lynnepynne]

hi everyone,
I'll keep it brief.
It's been a hard week. (nuff said.)

(minvanmama, hope your sinus infection is better?)

Everyone stay brave!
Lynne

[Shallwearpurple]

Hello everyone.
Drum roll..... I'm actually feeling good this week!

Waiting on some test results. Should have them by Monday.

[rsb]

hey y'all.

had my EEG this morning- my neuro had it moved up after my frightening episode sunday where I was basically hallucinating in the grocery store. I'm pretty accustomed to EEGs being unpleasant (my 4 year old has had tons since his epilepsy dx 2 years ago), but this was like a mini-vacation! 45 minutes alone in a dark room, relaxing in a recliner under a blanket.....ahhhh.

Physically this week has kind of sucked. I'm having much more weakness in my right arm and leg, and this awful, bone-crushing fatigue. I've been having spasms, often waking me at night and making it impossible to walk when I first wake for about 20 minutes. Neuro gave me a script for flexeril at bedtime- it helps a tad, but I get spasms during the day now, too, basically anytime I move quickly or try to reach for something (or hold anything for more than a few seconds). It's starting to really worry me that I doubled my prednisone dose, yet all of my neuro symptoms are worsening (the joint swelling and heart symptoms from lupus are milder at this dose). ARGH.

Rachel, 39 with celiac, lupus and possible MS

[browneyedlana]

checking back in talked w/nurse from ms dr office sorry little long

Went in on 9/9/11 to MS specialist.I just received results of the tests.

All my bloodwork was in an acceptable range for me aside from the amenia which I was aware of and taking iron for.(been that way since I had my 2yr old to some extent)

The doctor read my mri's that I took to him and saw 2 lesions a possible 3rd on my cervical.He order a double strength MRI.

Evoked potentials were normal I guess was not discussed.

MRI showed the same lesions (I think they are on my left temporal lobe?)2 bulging discs in my cervical and arthritis in my cervical

The nurse that spoke with me on the phone told me that my MRI showed no progression(last MRI was 5 months ago)she told me that my sx's are consistant with MS but because there was no progression as of yet that they considered my condition to be refered to as demylienating disease......not called MS unless I show progression with a follow up MRI scheduled every 3 months for the next year.

She also said that I should treat my symptoms with baclofen and something for nueropothy because of my constant pain,burning,pins and needle type feelings,numbness, and muscle spasms in rt hand and feet.

I am relieved to know I am not crazy,but still frustrated because I am not sure what demylienating disease really means.I tried to look it up but it sends back to MS.I asked the nurse what it meant and she and was it MS or basically the same thing she said that had alot to do with my insurance wanting to see progression before they would treat it with MS drugs(medicare) and I suppose the doctor is very cautious to give MS dx's.The doctor did not read the MRI himself but plans to do an overread to give his opinion and if they make the MS diagnosis she will contact me.All medicare and medicaid mri's are sent out to a radiologist hired by them and all blue cross and other insurances are read by the MS specialist himself.He said my other films were misread -one said 1 lesion on said none.He saw 2 on each.I hope he over reads so I can get a true account of the number and place of the lesions.I trust his judgement.He is supposed to be the best MS specialist in the state of Alabama.I believe if there is any progression he will not hesitate to dx.

I guess I am just wondering has anyone been in this boat?
I am hoping it never progresses but I hear that is not usually the case and the nurse said they have people with this ambigious dx's for 5 or 6 yrs and then there is progression and they have to start MS drugs.
Not even sure I want the drugs because I have heard good and bad.

Sorry so long,I hope this helps others like myself who seem to reside on limboisland with its murky undx'ed but sx's and same challenges as dx'ed.Atleast with all the labs we know what it is not and that....whew....I AM NOT CRAZY but "something" is wrong whatever remain somewhat nameless you rotten disease I will not let you win regardless of you anonymous status!!

God bless all here and I hope all is well with each and everyone of you and I hope this post made sense as I struggle with the cog fog thing I think yall call it!

[Shallwearpurple]

browneyedlana...

"All" of your bloodwork is normal. Did you see what "all" included? I was also anemic for many years. No one tried to find out why. A friend told me to drink orange juice with my iron pills. Usually, the iron pills didn't help, but with the vitamin C they were a little better. The doctors still didn't try to find the reason for anemia even when the iron pills didn't work. They assumed I wasn't taking them regularly even though I told them that I did.

Finally, the last GP I went to checked my B12. It was extremely deficient. Without it, just like vitamin C, the body can't absorb iron properly. It often begins with pregnancy and is common in pregnancy. For some reason, the OBGYN doesn't always check it even if your iron is low in pregnancy. Mine didn't.

[stalo]

I am waiting for progression too

browneyedlana - I am in a similar boat as you are. I presented w/sx of MS, had MRI, many lesions of a "demylinating" type, all blood work & LP came back fine. Had a follow up MRI in May & there was no changed to my lesion load. I am waiting to get worse, or to have another lesion show up on the MRI. Next MRI is in Jan. I have had additional sx come up, but nothing dramatically enough to qualify as a "second event" to know for sure it is MS. I have stopped worrying about the outcome, altho, I am hyperaware of everything going on in my body, sort of on the look out for something new to crop up!

[browneyedlana]

Shallwearpurple-Thanks for the advice and you are right I have been checked for the B12 and vitamin D and iron.I had a gastric bypass so I take B12 shots monthly.I had low D and iron and have been treating them all with supplements for all.(presciption supplements)The iron is the only one that is now border line.I continue the to have symptoms despite the fact that the level are now normal.

stalo- I know the feeling!Did they tell you your dx's was a demyleinating disease.That is what they said it was.I asked them to specify so that when I go to have other tests or see my regular nuero I won't look stupid and say the wrong thing.They never did a LP on me but my sister has MS and her LP was negative but they dx'd her bc of footdrop and other sx's.I call her all the time and ask do you do this or have you felt this?Most of the time she is like yeah.I used to call her before she ever got dx'd and we would always wonder what the deal is why we had so many similar things.She did not even know it was MS then nor did I.She had cancer so they never even talked about the MS to her.She is just now trying to put together what was from cancer or what is the MS she recently found she has.

I know I hate wait and see. I am not very patient and I like to be proactive.It feels like I am wasting time doing nothing and should be doing something.

I wish you all the best and hope you find answers.God Bless!!