Calling all limbo-landers limbo check in 10/4/2011

[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 you how you are doing.

How are you doing/feeling this week? I hope the week is better this week.

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

In island news - No new news this week.

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

Sorry i have been away. My DD has been useing the computer for her homework. I have been checking on everyone from my phone this week.

I am glad some are feeling better. I hope you keep feeling good. I know others are in the wait and see game. Keep hanging in there. I know it is hard to wait. Keep on posting and know that we are here for you as you wait.

I am feeling better. Just my left eye is giveing me a fit. So that is it for me. Just waiting for my next apt with the MS neuro in a few weeks.

Well i have to run. I have to get kids off the bus. They are getting out early today. I will check back later.

[Shallwearpurple]

minivanmamma, Glad you are feeling better. I laugh every time I see your name. I just graduated from my minivan to a car. My dad was very upset with me for doing it. He can't wrap his head around the fact that my oldest child is out of the house, the second is driving...so they rarely ride with me. It has taken some getting used to though!

I'm feeling pretty good, but lots of flu-like pain and joint pain. My eyes are mostly good and my balance is good. Having trouble getting B12 shots. They keep being on backorder.

Got the results from my thyroid ultrasound. Back in the spring when I had all the MRI's due to suspected MS, they found part of it enlarged. Working on one thing at a time, the thyroid was on the back burner. Guess what? The ultrasound said that it is enlarged just like the MRI did.

I guess it gave a little extra information they were looking for, but it sure seems a bit redundant. It is vascular (that extra info), so I'll be getting a biopsy. Maybe this thing answers some of my fatigue problems that haven't completely left with the B12 treatment.

Because of this, they want to revisit a spot on my lung that they also found in the MRI when looking for lesions. Originally, they said it was nothing.

FYI: Always get a complete copy of all tests that are done to review for yourself. The neurologist who ordered the MRI's said that there was nothing at all on them. I was shocked because 4 MRI's from head to tail is a lot of area to check and not find anything even if it doesn't relate to the original purpose. I asked him if there wasn't something I should know that was unrelated to his purpose for the MRI. He was very annoyed and said emphatically NO.

There was the thyroid, the lung spot, and numerous findings in my back with the discs and bones. My newest GP mails copies of every test to me with his thoughts penned at the bottom. Yes, every test: blood tests, ultrasounds, etc.

[minivanmama]

Going to the middle of the island to
Sssssscccccccrrrrrrreeeeeeeaaaaaaammm

[jumpinjiminy]

I couldn't agree more with getting your own copies. My GP was able to help with a couple of things that weren't reported by docs who ran tests. He only knew, because I brought the records in to add to his collection of my paperwork.

I'll join you in that scream, MVM. I had my three month follow-up today with the new neuro, except it was his new nurse practitioner. She was dismissive. And so, I'm going to ask each neuro I currently see a hypothetical question of what their treatment choice would be if I were to come in one day unable to walk, or see, or hear or pee. The answer will determine who I stick with for future follow-ups.

And then, I will wait until I can't walk, see, hear or pee to call them again. The simple fact being, until their all-seeing MRI shows something definitive, and most of us here know how long of a process that can be, they will refuse to acknowledge this is something other than psychosomatic.

And they can take that and put it where the sun doesn't shine. Until that day comes, I will continue to hobble on alone without formal medical guidance. Thanks, friends, for showing me the way to handle things without their input. I get better advice here than I do after my insurance company shells out $300 for a 15 minute visit with an expert.

I would like to prepare for some things that I see coming, but will wait until they happen because that's how this country works. Sick care, not health care.

[maitrimama]

MRIs, Pain and Sadness

As of this morning I really wasn't having pain, granted I've been told I have a high pain tolerance (childbirth, surgery, broken bones and migraines) but I felt more discomfort than pain. That changed when I went in for my head/neck MRI this morning. I have had MRIs before and did fine, about an hour into it got bad, very bad. One of my weird symptoms has been what I call "the princess and the pea syndrome" I have become increasingly sensitive to things that touch me, a tiny piece of dog bone stepped on feels like a boulder!!! Silly me had my hair in a pony (my hair on my neck drives me nuts) and with 1/2 hour to go the small, soft pony holder felt like a burning knife being stuck into my head. I refused to stop (did I mention that I am stuborn?) and finished the MRI. Thursday I have my spinal MRI - note to myself...NO PONYTAIL!

Now for the overwhelming sadness...
I met with my psychiatrist today (he's the doctor who first suspected MS) and he was open about the fact that 8 years I was probably misdiagnosed with bipolar disorder, it looks like s I've been fighting the wrong demon. No wonder I have never felt stable and meds haven't really worked. Here's where it becomes heartbreaking - because of my instability I have lost my marriage, custody of my daughters and I barely survived a suicide attemp.

It has been a long day. M

[browneyedlana]

I also was misdiagnosed with bipolar disorder about 8 yrs ago too.Turns out was complex partial seizures and of course the suspected MS that is now dx'ed demylinating disease until there is progression atleast.I want a name but NO thank you NO progression please!!!

Maybe we all should stand in the middle of the island and scream and when we look around at all of us acting nuts screaming we will start laughing til we cry and feel better!!!!!LOL

Good luck and God Bless to all!!

[jumpinjiminy]

They wanted to diagnose me with bipolar years ago and a recent consult with a therapist proved I don't have depression, bipolar or any other common thing they like to write these symptoms off as. Just yesterday, the NP tried to write off this new bunch of symptoms on me stopping the Cymbalta. I had to remind her I had these things before going on it, during my time on it, and now again without it. Bunk. Knock is off already, mmmkay? This whole experience is making me bitter, however.

Just found a neuro at a university hospital whose bio reads: Multiple sclerosis, transverse myelitis, optic neuritis, acute disseminated encephalomyelitis, neuromyelitis optica (Devic’s disease), other inflammatory demyelinating diseases. Research Interests: Clinical trials in multiple sclerosis testing new therapeutic approaches, MS in the Hispanic population, clinically silent demyelinating disease, and the use of ocular coherence tomography as a possible marker for axonal loss and brain atrophy on MRI.

Dare I try and get a referral and see this one? I've had a couple of tests show lesions and objective evidence of a possible demyelinating process, but not enough for the small town guys to stop blaming stress. Funny thing, before this started, I've been experiencing the least stressful period of my life. Bunk again, guys.

I have half a mind to contact my insurance company and ask their advice on who to see that would work to resolve this before a disability actually occurs. I'm kind of sick of shooting in the dark looking for that person.

[amickeybear]

Here is my story.

Dec. 2008 I finally decide to go see a doctor for my shaking. Ha what a joke.... He did some test everything came back normal so he said I was not eating enough protein. I therefor bumped up my protein and it still did not go away just got worse. So he sent me to a neuro (my first) he did an MRI it came back normal so he said I had Essential Tremors and I left it at that. I saw a new GP and they said I needed to be retested for MS so they referred me to a new neuro (second). He just start prescribing meds to treat Essential Tremors no extra testing nothing. (I feel like he looked at my file and just wrote me off.) When I went back and complained that I was still have massive pain he said I had fibromyalgia. So I went to a rheumatologist and his diagnosis was that I might have fibromyalgia but that it could be something else. Not Sure

So as of today I have seen 2 neuros 2 rheumatologist and 4 GP, the GP's think that I am showing signs of MS but the neuros don't think so. So now on Oct 13 I am seeing a 3rd neuro and hopefully this one works and knows what he is doing.

My symptoms are
Electric shocks, muscle spasms, memory loss, difficulty concentrating, tremors (massive looks like I am waiving at you), Pain (extreme), Dizzy/unstable, fatigue (extreme), headaches, tingling (throughout body arms & legs worse), trouble putting thoughts into words, voice tremors, stiffness, heat sensitive, and don't drive anymore.

I do not have eye problems so far and brain scans are normal. But my GP still thinks I have MS that is undiagnosed.

POOP

[valeriem2220]

I am still just waiting.........
Just had another visit with my neurologist yesterday. We did the nerve test on my legs and everything looked fine.
He mentioned starting me on COPAXONE...but decided not to because I am doing OK at the moment and he said the Copaxone can have some nasty side effects that could possibly make me feel worse. I haven't researched this drug yet so I do not know.
He said when I do feel bad again then we will have to consider taking that route.
He said at least I do not have progressive MS because I haven't been going downhill with every visit. So he said that was good and we do not need to rush to get me medicated.
Still no definite diagnosis but he can tell me I don't have progressive and to consider starting me on Copaxone...I am somewhat confused.
All he talks about in our visits is MS...yet no diagnosis. I am wondering if he is just waiting for another flare then he will hand me the diagnosis and start treatment.
For now I take meds to ward off the little things I feel. Nerve pain, electrical shocks, had a cortizone shot, melatonin because I work nights, med for my newly found hypothyroidism, and singular to help me feel better while I slowly stop smoking and meclizine for dizziness.

[minivanmama]

It's good to see everyone on the island this week. It looks like i am not the only one feed up this week.

shallwearpurple- Good to see you. I know it must feel strange to be back in a car. Good for you to make the move back to a car. Enjoy the ride.

I am gald that you got copies of all your medical records. I get mine everytime. It does pay off. I hope that all goes well with your tests and that you get good news.

I hope you can get your b-12 shots soon and get to feeling better. Lots of ((((hugs))))

Jumpinjiminy - Good to see you on the island. Glad i am not the only one feed up with doctors and there staff. I am sorry for the bad neuro visit. I would be screaming to.

I would love to hear the neuro answers to your hypothetical question. I ask on this week and i will tell you the answer i got when i an done replying to everyone.

I have to aggree i have gotten better advice here. I have 2 good doctors on my team but my neuro has not helped my much in the 2 years that i have seen him. So i understand just where you are comeing from.

I hope you are feeling better and know i am right there with you hobbleing along. Lots of ((((hugs))))

maitrimama - Good to see you. Bless your heart you have been through a lot. I am so sorry for the misdiagnoses. I am glad that you posted what happened.

I know it has been a hard week for you. I will keep you and your family in my prayers. I know it must be so hard. Just know that you can post any time you need to. We are here for you anytime. Keep hanging in there and keep on posting so we know how you are doing. Lots of ((((hugs))))


browneyedlana - Good to see you. Thank your for sharing about your misdiagnoses. I am sure it has helped.

I hope you are feeling good and doing good. We just might just start laughing till we cry after a good scream. I like to laugh till i cry.

Have a blessed week and lots of ((((hugs))))


jumpinjiminy - Well you could give him a try. I would love to hear what the insurance would say to your question. I know the feeling of shoting in the dark. I am sick of shooting the in dark also.

Thank your of sharing your story i am sure it has helped. Lots of (((hugs)))


amickeybear - Welcome to the island. I am glad that you found us. I am sorry that you are getting the run around from your doctors. That is just so frustrating.

I hope that this new nero will get you on the right road to finding answers. It sounds like you have a good GP that is a big help. Let us know how your apt goes.

Just know that we are here anytime. Keep on posting and letting us know how you are doing. Lots of ((((hugs))))


valeriem2220 -Good to see you. I am glad that your visit went well. I do think he is waiting for your next flare to give you a DX.

He sound like he is a good neuro and wants to help you. I am glad that you are doing ok right now and just treating the SX. Just that can be a big help.

Keep us posted on how you are ding and feeling. Lots of ((((hugs))))


OK to let you know what is makeing me scream. My neuros office. I hate emory!!!

I called to change my apt. The person who answers the phone told me his next avalible apt was MAY!!!! I did not say much and hung up the phone.

So i call back not to mad yet. Talked to the nurse and she would call me back later so she could look at his apt book. OK though it would all work out.

She calls back 15mins later. She told me his next avalible was MAY!!! Now i am a redhead and well i calmly asked what would happen if i were to get really sick and needed to see him what am i to do?!!??!! She said that she did not know and i would have to call then and they would tell me what to do. I was now ticked. So i asked for my neuro to give me a call back and only the neuro. I told her this is just rediculous i have been his patient for 2year and sould not have to wait till may to see him and then hung up the phone.

So now i wait to hear back from him. I will let you know how it goes. So as for now i am letting his staff meet and swim with our sharks.

Good night limbo island and sweet dreams. Lots of ((((hugs)))) to everyone.

[chucklebug]

Can I just say that being in limbo really, really sucks? (I realize MS really, really, REALLY sucks, though.)

[maitrimama]

Long Week

It has been a long week but I got all my MRIs done - head, cervical and full spine. I am scheduled to see a neurologist who specializes in MS and movement disorders next week. I have also whittled done my symptoms to a list of those that concern me most:

Vision problems/pain
Numbness/burning right side of face
Problems swallowing
The hearing music now makes me chuckle because so many others hear it as well =)

Some interesting things have surfaced:

Bulging C4 C5 could very well acount for numbness/heaviness in my right arm, but not the numbness etc in my right leg
They (and I ) think I had a partial simple temporal lobe seizure on Wednesday evening, probably not the first

I am grateful that I have a good team working with me. My GP though young and a little inexperienced is super kind (cute too!) and very curious. His partner is much more experienced and in on what is happening, their nurses are the best (last Monday one came in to draw blood and could tell how upset I was so she sat and let me cry - she shared that she has lupus). My Psychiatrist who recognized that something was up and his friend the neuroradiologist who as a favor is looking at my cat scans & mris, past and present this weekend. And an incredibly dear neurologist at Columbia Presbaterian (sp?) Dr Lucien Cote who I saw 1 1/2 yrs ago for gross motor movement problems. He still calls me every couple months (himself) to see how I am doing. I am beginning to wonder if he suspected something all along?

I understand, but don't fully accept, that there may not be any neat answers. I have also already decided that I am not going chasing after a diagnosis. If that is what happens I will work with my "team" to put some bandaids on what symptoms we can and get on with my life.

[jumpinjiminy]

MVM, that would upset anyone in this situation. It's certainly a scream-provoking incident. Overall, my appointment was good. I just felt some dismissiveness in the end. And I know that sometimes they do that as a reassurance for us. I can appreciate that, but I'm not a china doll and I know there is something more going on here.

My neuro was very kind, he works so hard. He was able to get back to me personally within a couple of days. I asked him for a roadmap, what his gut feeling was on what we're dealing with, and if the day comes that I do call with one of the big uglies, what treatment options would we be looking at.

He understands completely how long and frustrating this can be, and admitted that sometimes they just don't know what they're dealing with. He mentioned steroids as a tx option, but wanted to review my records, look at my MRIs, and said he would get back to me on a game plan.

He understands I want to prevent anything worse happening, and is willing to work with me on that. It is reassuring to know we can set up a potential game plan for the future, instead of meandering through this with blinders on. I think that's all I needed to help go through this process.

Feeling much better about things today. I can see why this neuro is so popular in the local area.

[browneyedlana]

minivanma-I too was diagnosed with complex partial seizures they they say are left temporal lobe and the 2 lesions I have are on the left side.Incidentally my numbness,burning weakness ect is on the right.I often wonder is there some connection that they are missing with this.(the seizure thing)I also have the same cervical bulges you do and a herniated lumbar.I have had these and know the pain and feeling of sciatica but this is a little different that I feel now.Don't really have any advice just find it odd that lots of us have had same dx's of certain things such as fibromyalgia,seizures ect and sme misdx's such as others here had mentioned bipolar disorder.

oh well maybe just a coincidence but is alot of coincidences.

The nurse that I finally spoke to said at MS specialist told me my dx's was demyelinating disease......wow that clears it up for me.(????!!!???)From what I understand that just means need more evidence for the MS diagnosis.They said that at this time we will treat sx's with Baclofen and Neurontin in addition to the Keppra for seizures and pain meds.

From what I hear the MS drugs are not always the greatest anyway there are always side effects.

Good luck and God bless to all!!!!!

Thanks for being here to talk with.Ya'll are a God send.It helps so much to have ppl who understand how I feel and what I am going through!!!!

[derrie]

Hi all. Haven't checked in here in a bit. Work is busy.

MVM-- That "can't see you till May" is ridiculous. Here's the trick: do as you did; demand to speak to the doctor or his nurse. They ALWAYS have reserved appointments for emergencies and follow-ups and the like. When I was first getting my referral to a neurologist, they told me it would be three months before I could get in. I was in excruciating pain that was affecting my daily activities, so that was unacceptable. I pushed, explaining I was NOT exaggerating, and ended up getting an appointment a week later.

***

As for me, I am hoping I am getting closer to a diagnosis, but who knows. I have another appointment on Monday. My latest news is interesting. As an "experiment," my neurologist put me on ropinirole (aka Requip), a drug used to treat restless leg syndrome. Now, I don't have "restless" legs or trouble sleeping, but I was having excruciating pain in my legs and arms, but it faded when I moved around.

And the ropinirole seems to help! This is the first drug that has done ANYTHING to help me! I still have the tinglies, but dulling the pain has made my life SO much better. Further investigation -- a blood test -- showed my ferritin level to be very low, indicating iron deficiency, which -- because there seems to be no other reason I'd be low in iron -- seems to show that I am have a malabsorption issue.

So, with iron deficiency and neurological symptoms, now we're looking at celiac disease. I get tested for that next, then an LP to look for inflammation. My neuro hasn't ruled out MS, he says, but he is leaning away from it (clean MRIs) and leaning toward some other autoimmune problem.

I just want a darn diagnosis so I can treat whatever is causing me all this trouble!

(All this said, I may cry if I can't eat gluten again. I am a baker! What would I do without my brownies and cookies and pies?!)