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Calling all limbo-landers limbo check in 10/25/2011

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    Calling all limbo-landers limbo check in 10/25/2011

    Good morning limbo island!! It's time to limbo!! The sun is out and the weather is great. 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? It was a busy week last week and many had really bad days and week. I am sorry that so many are haveing a hard time. Just keep posting and know that we are here for you anytime. Keep hanging in there.

    Are there any doctors apt 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 and remember that you never scream alone.

    In island news - Welcome to all your new limbo landers. I am glad that you found us and know that you are not alone.Kep on posting and know that we are here anytime you need us.

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

    Hi everyone boy was the island busy last week. I am sorry that i did not post back last week. My fatigue has been bad. I did read to see how you are doing and my heart goes out to all of you.

    I am gald to see everyone posting and getting support. Keep it up and keep hanging in there. I hope the week will be better for everyone.

    Lots of ((((hugs)))) everyone and i will check back later.

    Limbo land!

    Hello fellow limboer. I am waiting for a appointment Friday and hope to get some answers. Not knowing has to be the worst. Nobody wants to hear they have ms but at least if I get a answer I can move forward and treat this. I'm a 32 yr old mom of 4 active boys and the fatigue is killing me. Sending hugs to all


      Hi MVM. I'm sorry to hear the fatigue has been getting the best of you. Just know we're all here for you as well. I went out shopping yesterday and ended up crashing a couple hours after getting back, but no after effects today. I think I'm heading into a good phase, feeling good and more productive. I got my flu shot yesterday, and so far no after effects from that either. Blurred vision is mostly gone now along with the noodle legs and just a slight tremor remains. Yay.

      PT is going well, things are loosening up and I'm feeling stronger. Got alot done this weekend in the gorgeous weather.

      Nicole, hugs for you. We know where you're coming from.
      I do not have MS. I have Whatchamacallit; and all of the symptoms are mirages.


        Went to the neuro today. My EEG, the short in office one, was normal; so he wants me to do the three day ambulatory EEG now. Sounds like loads of fun. He didn't have the results from the CSF back yet, two more weeks on that. He is referring me to a urologist.

        With some pressing I got this long story seems as if I either have a seizure disorder or probable MS. He really doesn't think it is a seizure disorder, but he wants to make sure so it can be ruled out totally. Either of those...or this is a one time isolated incident that will never reoccur. Which he doesn't feel is quite the answer either, but only time will tell if it all goes away and never comes back.

        I did have increased CSF pressure which seemed to be causing my chronic headaches. He is putting me on some meds to help keep that down. So that is a plus.

        Now I'm just waiting to hear when the three day EEG will be and when I'll go to the urologist. It's all hurry up to wait.
        ~ Lisa

        In limbo-land waiting for a diagnosis...yay?!


          Hi All

          So far it sounds like the themes for the week are fatigue and waiting, both of which I can certainly relate to. I have been on on meds for ADD for a while which has been doing double duty and helping with the fatigue and a little bit with cognitive issues but there is currently a shortage of that drug...long story short I was out from Friday until today and boy did I feel it. My Psych went above and beyond to make sure I was able to refill my Rx.

          I am also at a point where I need to figure out what to do next. If my eyes/vision weren't involved I would be tempted to throw in the towel. But my eyes are involved and I am afraid that the vision has been permenantly effected and that it may get worse. I have already lost contrast sensitivity, some color vision, even a small amount of glare makes it hard to see, depth perception has been diminished and night vision is getting worse (all lights look like big starbursts).

          With the help of my Psych (who is in touch with my GP) the next step is Neuro Ophthalmologist and new Neurologist in NYC (which I was trying to avoid).

          Am I the only one who thinks this all a major pain in the butt?
          A question that sometimes drives me hazy: am I or are the others crazy?
          Albert Einstein


            Nicolemarie 1313 - Good to see you. I am praying that you will get some answers on friday. I am sorry that your fatigue is bad. I know the feeling.

            I hope you will get to feeling better soon. Lots of (((hugs)))

            Jumpinjiminy - Good to see you. Glad that you are doing some better. I am glad that you got your flu shot and did some shopping and did not pay for it the next day.

            I hope you are going into a good phase and that it will last a good long time. It is good to hear that PT is helping you. Thank you for thinking of me. Lots of (((hugs)))

            mareintx - Good to see you. I hope that you will get to have your test soon and can get in to see the urologist soon and don't have to wait to long. I know the waiting is hard.

            I am glad that you got to talk to your neuro about what is going on. I pray that you will get answers soon. Lots of (((hugs)))

            maitrimama - Good to see you. No it can be a pain to deal with some times. I am glad that you were able to get your meds and that your psych was able to help and make sure you get your meds.

            I am glad that your doctors are getting you into doctors that can help find some answers. I am pray that you will get answers and you get them soon.

            I hope your eyes will get better soon. Keep hanging in there. Lots of (((hugs)))

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


              Yup, it's a waiting week. As I have mentioned, I am pretty anxious to get my LP results.

              In other news, I got the dang LP headache. It started yesterday, three days after my LP. I guess it didn't bug me over the weekend because I was mostly lounging around on the couch. But now it's there whenever I'm not lying down, a strange pain in the back of my head that gets especially worse when moving. It does not respond to advil. Blah. At least it's not totally debilitating. Just pretty painful. Lucky I have a high pain tolerance, I suppose.

              Anyway. I spoke to the neurologist on call, and if it's still there tomorrow, I'll go get that epidural blood patch. Just sort of grumpy about it-- I thought I had almost escaped the LP completely unscathed!

              And yes, Maitrimama, this is pretty much all the biggest pain in the tookus ever.

              Sorry for the grumbling, folks-- I think I will be more chipper when this headache goes away.


                I take cognitive tests next wed. Neuropsych said I should go ahead with it even tho I am less spacey than I was on topomax. I am still struggling with expressing myself clearly if i need to do so in a hurry.

                New sx...warm water running down my leg sensation! Great feeling sensory sx are worse but dr won't increase my GABA.

                Good wishes to all as we go on this incredibly frustrating journey!
                "God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference" Reinhold Niebuhr


                  Pet Peeve

                  It drives me nuts when I lose my train of thought, or can't find a word and someone tries to finish my sentence! My family has gotten pretty good at bearing with what I call my 15 second delay but the rest of the world seems to think I need help, I don't need help I need patience!
                  A question that sometimes drives me hazy: am I or are the others crazy?
                  Albert Einstein


                    This is the second day out from the flu shot and I woke up with symptoms this morning - tremors, paresthesias, heaviness, headache and blurred vision again. But they're all mild and I hope stay that way. Gosh, I was so hoping to escape it unscathed. Ah well. It's not nearly as bad as what came on with the flu itself, and hopefully stays that way.

                    I was starting to feel so good too. Raspberries.

                    Derre, sorry to hear you got the headache. I had a little one that started the day after the tap and lasted awhile, but after a few days on my feet it went away. And don't worry about grumbling. That's what we're here for.

                    Stalo, I hope your cognitive tests go well. I couldn't take that topomax either. My hairdresser said 2/3 of my hair fell out from taking that for 3 weeks! I thought I was going to be wearing a wig this summer. It's still incredibly thin. Not all of it is growing back either.

                    Who's ready for a cup of tea? This gloomy weather calls for some candles, soothing music, some lovely tea and a good novel. Soon, it will be time to move the firewood pile close to the house for easy access. Strangely enough, I'm looking forward to some cooler, whiter weather. I love fall. The colors are just beautiful right now, except for the gray sky. ;-)
                    I do not have MS. I have Whatchamacallit; and all of the symptoms are mirages.


                      This is the first time I've posted as a "limbo lander." I've been blessed to find this message board and so many of your stories pull at my heart and inspire me to keep going. My symptoms started in August and I've been to many doctors since then basically pleading for answers but walking away with none.

                      I saw my GP because of a tingling, aching, burning sensation in my right arm and hand and right leg and foot. It felt as though they had been asleep and tingling from just waking up. This led to a dull ache that felt like it was deep down in my muscles. It got to the point that I dreaded putting my feet to the floor first thing in the morning because I knew how painful those first several steps would be. My right hand started having the same pain and my pinky finger would be stiff and pain would shoot from the tip of my finger all the way up my arm and into my shoulder. My GP asked if there was any family history of auto-immune disorders or other health issues I've experienced over the last few years. I told him that I was diagnosed with Interstistial Cystitis in June of 2010 after months of bladder spasms and an inability to empty my bladder. He doubted these were related and referred me to a Neuro.

                      I saw the Neuro a few weeks later and after a very short office visit, he ordered an MRI of my lower back. When I asked about my neck and brain, he just said "we'll get to that..eventually" but doubted there was cause for concern. In August I had the MRI of my lower back as to which the Neuro told me my results were normal and that he wanted to do a nerve conduction test. His nurse scheduled it for October (this was in August.)

                      The arm and leg stuff continued with some days being better than others but still increasingly painful and frustrating. In the second week of September, I started to have horrible pain in my lower back and top of my neck. I made an appointment with a Chiro in hopes of getting some pain relief while waiting for further testing by the Neuro. At my first appointment with the Chiro, he immediately noticed a weakness in muscle on the right side of my body. After explaining my symptoms and the lack of recovery, he ordered an MRI of my brain and cervical neck.

                      I had my first brain and cervical MRI (w/out contrast) in September. The brain MRI was normal while the cervical MRI showed some issues with discs, etc.. The Chiro quit doing adjustments and referred me back to my GP. GP again acted like I was just whining and needed to basically suck it up. When I told him that I had been reading about MS and it's correlation to IC, he asked me what I wanted him to do. He asked if I would be content with spending the rest of my life on medications that are expensive and sometimes dangerous should an MS diagnosis be made. Nice, huh... He referred me to a Neurosurgeon and I also made an appointment with an Orthopedic Surgeon to discuss my neck and find out if it could be the cause of everything that was happening.

                      I loved the Orthopedic Surgeon but his opinion was that my neck was not the cause of all of my symptoms. He suggested a cervical epidural but after thinking about it and discussing it with my husband, we've decided to wait. I saw the Neurosurgeon the following day and he referred me to another Neurologist to do an NCV and EMG. Meanwhile, pain, fatigue, depression, all building up and I feel like a ticking time bomb.

                      Two days after seeing the Neurosurgeon, I was rushed to the ER with paralysis of the entire right side of my face. The medical staff at the ER said that it appeared to be Bells Palsy but that my muscles recovered quicker than typical with BP so it was more than likely just another symptom to add to my growing list. I was thankful to be at the ER because the pain in my lower back, hips and neck had become intolerable and finally someone gave me pain relief stronger than Motrin..but still no answers but to make sure to see the Neuro the following day.

                      I saw the Neuro and had the NCV and EMG and an ultrasound of my coratid arteries. I won't even go in to how awful my opinion quickly became of the Neuro. After sticking me with needles and electricity for four hours and spending the night in the ER, he told me that I "just seemed really depressed." Yeah..lovely. He made an appointment for last Tuesday to go over the test results and to review my MRI together. A friend with Lupus said that she always got further with doctors when she brought her husband along for the appointment. My husband and I went to the appointment on Tuesday and the Neuro acted like he had never seen me before. He said my NCV and EMG were normal but didnít go over the results with me. He said thereís nothing majorly wrong with me, I just need to exercise and gave me a pamphlet for neck stretches because my muscles were tight. There was nothing that pointed towards MS. Those were his words..this is NOT MS. My husband asked than why was I having so much pain and weakness in my arm and leg and why the fatigue and paresthesia and all the doctor said was ďI donít know but it is safe to rule out MS and any other major illness.Ē I thought flames were going to shoot out of the top of my husbands head.

                      My husbands next question was with regards to my MRIís. I had not had one done with contrast and we both knew that we deserved to have it and that it is usually part of the normal MS protocol. The Neuro replied that my MRI w/out contrast was just as good and to which my husband asked so then why do doctorís order MRI with contrast if there is no difference in the two tests. Before he could answer, I asked him if he had looked at my MRI and he said that it was normal. By researching the internet, I knew to ask him if he had personally looked at the images or just the radiology report. His response was that he and I had already been over the images together and it was written so in my file. I thought my husband was going to come undone. He and I both knew that this Neuro didnít even HAVE my MRI images at the previous appointment. When I mentioned that to him, his reply was that he wasnít a liar and would never make up a story. He then started to thumb through my file and low and behold there was no radiology report in there. The nurse started to leave the room and he snapped at her to stay and was pointing to something in the paperwork. The doctor and the nurse left the room to get my MRI images so that we could all go over them together.

                      At this point, my husband told me not to ask anything else from this guy because it was clear that we were wasting our time and money. It was a good 15 minutes before he came back to the room and ushered us to his computer screen. He rolled his mouse over a few of my brain images and then said that if I wanted, he would refer me to someone else for a second opinion. And then he said that he was going to order an MRI WITH contrast. HALLELUJAH! We walked to the nurses station and as he is giving her the order for the MRI with contrast, he tells her for the reason to put ďSUSPECT MS.Ē Good Lord, what in the world?? This man just sat in the exam room and told me about three times that it wasnít MS. Did he do that to cover his butt or does he think that after looking at my MRI that up to this point was ďnormal?Ē

                      This was last week and I finally got the call on Monday from the imaging office to schedule my MRI with contrast and I had it today. I got all of the images on disc and have stared at them for hours today. I plan to call tomorrow to make an appointment with an MS Specialist. There is no way Iím going back to that Neuro. He became a means for me to get the MRI with contrast so that I can hopefully gain some closure on all of this.

                      The friend that I mentioned with Lupus also told me to see my Optho for an evaluation. I hadnít had my eyes checked in a year so I was due anyway. Itís the same Optho that I have seen for the last six years and I really trust him. He is a valued member of our community and strong in his Christian faith. We sat down and talked about all that has happened and he did several tests outside of the normal exam and determined that there has been a change in my visual feed. He wants me to see a NeuroOptho and Iím waiting on the referral. Iím quickly learning that none of this happens as fast as weíd like it to and thatís the most frustrating part.

                      I am happy to say that the last 10 days have been really good days. We read a lot about the benefit of Vit D and went to our organic health food store and Iíve definitely noticed a difference since starting it. There have been a couple of days that I have had zero tingling and burning in my arm and leg and those were so good for my soul. My mental wellbeing took a nosedive over these last few months and I needed some relief to focus again on the positive and to smile..even if itís through gritted teeth.

                      My symptoms are:
                      Tingling,burning,prickling in right arm and leg.
                      Pain in lower back across my hips and in to hip muscles.
                      My skin hurts when my husband touches me like itís bruised or sunburnt but it isnít.
                      Bumping in to walls and furniture because I take corners to short. This leaves pretty little bruises.
                      Tired A LOT
                      Extreme pain in my feet..especially first thing in morning and end of day.

                      Iím 36 years old and a stay at home to three awesome boys. We are an active family, always jumping from football to basketball to baseball and then all over again. We are huge Bama fans and season ticket holders and sadly, Iíve stayed home from most game this season because I just canít deal with all it requires. I hate what this has done to my life. I hate that I canít go, go, go and even when I try to rest, it is difficult to get comfortable.

                      I want to rewind to July when I felt like me and was enjoying my summer on the beach with my family. I want to rewind to the day it didnít take all I have just to go to the grocery store. I want the pain gone. I want the uncertainty gone. If it isnít MS, than what???

                      Iím sorry for the long post. I guess I should post this in the introduction thread and kill two birds with one stone. My heart and prayers go out to everyone that is suffering from MS and their loved ones. I have definitely learned a lot from matter the outcome. I plan to become involved in my local MS community and to help in any way that I can. Volunteer work has always been important to me and people with MS deserve everything and then some!


                        derrie - Good to see you. I am sorry that you have the headach. I hope it will go away soon and you can get to feeling better.

                        Get you rest and i pray that you will get answers soon. Lots of (((hugs)))

                        Stalo - Good to see you. I am glad that your cog fog is some better. I hope you will get good news on your test next wednesday.

                        I know the feeling of bad sensory sx they can really get to you. I hope yours will calm down soon and you can feel better.

                        Lots of (((hugs)))

                        Jumpinjiminy - Get to feeling better and i hope the gray weather will go away soon. Lots of (((hugs)))

                        maitrimama - I am always looseing my train of thought and it drives me crazy.

                        BamaMom22 - Welcome to the island. I am glad that you found us. Just know that we are here for you any time you need us and don't worry if your post is long. We all know how it feels to get the run around.

                        I am sorry that you have got the run around. It is very frustrating to be looking for answers. I am glad that you got your MRI. I pray that you will get answers and get back to your family and get to feeling better.

                        I am glad that you have had some good days. That is great and i hope you will have more to come. Let us know when you go to see the MS neuro. I hope you don't have to wait long.

                        Lot of (((hugs)))

                        Well it has been a long day. Good night limbo island and sweet dreams. Lots of (((hugs))) everyone.


                          hey limbo

                          for halloween, i am dressing up as a healthy person...just kidding..but wish i could!

                          Sorry to everyone still getting the run around...havent seen my PCP yet, being stubborn, but kno i need to, my legs are so weak, arms and legs shaking 24/7...

                          then theres the daily fevers....ewww

                          my next appt is in dec with neuro opth... rhum dr never re scheduled, just said come in if anything changes.. i am switching her and the neuro....

                          hope you all get to feeling better..!
                          your horse must be fast cuz' you were haulin' ***** when I passed you!!!!


                            LOL, BR. I wish you could too.

                            Have they tried to get your fevers under control yet? You need to get those fevers down. I tried an ice pack to the back of the neck and head the other day when my symptoms started coming on again. It helped - my vision stopped blurring and hands stopped shaking - I was not running a fever at the time.

                            If I were in your shoes, I'd try it. It's cheap, easy, and just might help slow things down. I've also read that ice wraps around the wrist can lower your core body temp by 2 to 3 degrees F, according to 'studies' that were not referenced. I haven't done a search to verify the claim.

                            There was a thread running here this week about body temp and it appeared the pattern was those with lower average body temps had a milder course than those who ran higher- like in the normal range.

                            The only side effect for me was that it worsened the headache that was coming on through making the muscles in the neck spasm (and maybe a little blood vessel constriction, who knows?). A baclofen helped that overnight.

                            If you don't have any ice packs, email me your address and I'll ship you some. I'll put my email in the profile section.
                            I do not have MS. I have Whatchamacallit; and all of the symptoms are mirages.


                              Hi fellow limbolanders and minivanmama!

                              I am waiting for finally meeting my ms specialist Nov 1 and then another neuro to get a second opinion Nov 8. I can't wait, I have not met my ms neuro since Jul and had last MRI in Jun. So I have been trying to wait as long as I could so I would be sure of showing something more on Mri.

                              Last time I was told i have very litle bright changes in the periventricular area. And he told me that was not enaugh to tell him anything, so we will see, just hope he will at least send me to get a new MRI.

                              I have been getting more symptoms, including urin running without me knowing (until too late). Sorry for my English! I also think my muscles in the mouth or neck is not cordinated, I have sometimes problem swallowing and now when I sneeze, i can not control my mouth :/. It is really strange. I was used to sneeze very quietly wiht clesed mouth!

                              I also have tingling all over always (face too) twiches around mouth and all over really but not always (comes and goes). I have twice had the burning feeling, once on my upper arm when hubby was touching me, and later without touching my chest was like burning. And many more symptoms, boring I know .

                              Please give me some comments of what you think and if you regonize anything on my list.
                              Best regards,
                              E.s sorry for my English