Your Replies

  • November 29, 2011 at 11:26 pm

    thank yall so much for the replies!! I hope all of yall are sleeping ok at night!! Bigtree- yea the ALS bomb is quite a lifechanging experience, it’s amazing how what you know as your life can be turned upside down by the mention of three letters!! Docs are just normal people, I defintely think they get desensitized to it all, someone may not be dragging their leg, and still have weakness that is a disability to them, if they can’t do what’s important in their lives anymore, and neurology especially is so subjective, which I guess is why my possible diagnosis keeps changing!! Now they say it’s not BFS, as I have clinical weakness (which I have been telling them I had weakness, but no one could appreciate it until last appointment with a new neuromuscular specialist).
    The neuromuscular specialist told me to not take the tegretol, which honestly I had only tried for three days and after three days of wanting to scream and crawl out of my own skin, i stopped anywyas, and got back onto my lyrica- what a great night’s sleep that was after three nights of NO sleep! Now CIDP is back in as a possibility along with much scarier options .I have my LP on thursday morning – praying something shows up on that, that will be treatable.
    Does anyone notice that the falling asleep of their limbs sensation is worse when lying on their backs? I can just lay down on my back and within minutes my arms and right leg feel like they are asleep, it still happens on my sides, not not nearly as bad.. interesting

    November 29, 2011 at 8:55 pm

    I was just reading what you have been through – sounds kind of similar to my issues.. I am still undergoing testing,I am currently a medical mystery, as I am losing function in my hands quite rapidly now. I have seen GI’s and neuros .. no one can figure it out as of yet. I still have the GI issues and have lost A LOT of weight. Do you feel like you are hungry all of the time? I feel starving ALL the time! Did you do the IVIG? Hope you got treatment and are doing well!

    November 19, 2011 at 4:06 am

    Thank yall so much, it really means a lot to me to have yalls replies! they make me feel so much better !!! I’ll give the dr a call on monday and request to go ahead with the LP…My only fear is that everything come back negative and we are left with no answers, or a diagnosis of exclusion or something really bad! I hope the bloodwork results come back fairly quickly too, we went through Quest, they have messed a few things up in the past, which makes me nervous, I hope they are pretty accurate, and I pray that something comes back that will lead us to a, ANY treatable diagnosis.. I was kind of scared yesterday in the neurologist office- we were talking about the events leading up to this whole thing, and I had blood transfusions after my son was born after the IUD perforated… he asked if I had been tested for HIV since the blood tranfusions, I said yes 2 times and each time negative, his response was well HIV is treatable, so just want to make sure…. In my mind it freaked me out thinking wow, so we are to the point where being diagnosed with HIV would be good.. sheesh… of course I said the same thing to a coworker, just like MS at least there is a treatment ANYTHING is better than ALS at this point! Thank yall so much again, I pray that the LP or bloodwork holds a good answer for us! thanks so much for yalls help!

    November 18, 2011 at 4:15 pm

    Thank yall so much!! I can’t tell yall how much it means to me for yall to take the time to reply.. Yea, I’m not really sure why he did’t schedule the LP… he asked me what my LP showed (assuming I had already had one) and when I told him I hadn’t we kept talking about so much , he really spent a lot of time with me and did a very thorough exam, I actually wonder if he forgot about the fact that I told him I hadn’t had an LP yet.. They are ordering some more detailed bloodwork and supposed to call me back here today or monday.. i think i’ll tell them I want to go ahead with the LP, and repeat EMG (EMG performed by him a specialist in neurophysiology and neuromuscular) whiel we are awaiting on the blooddwork results.. .. I know by some standards i’m not “bad” enough to need IVIG or whatever treatment it may be.. but I am having a hard time performing my job and taking care of my kids,, so in my mind with it interfering with every aspect of life i am bad enough… He did say likely what is causing this will be IVIG as the treatment, but we are just trying to narrow it down…. I think i’ll be in a total panic if bloodwork and LP is negative.. My arm is SOOO weak and sore after him performing the strength tests on me yestserday- did any of yall have that?? Does the muscle fatigue last on into the next day?

    November 17, 2011 at 10:01 pm

    laurel.. I completely understand the hard to function part! I am usually pretty good at looking at the bright side of things- “it can always get worse” i always say… but then the 1st dr scared us on a friday evening telling me he was concerned for ALS , oh see ya next week- what!!!?? but when it comes to ALS, i just can’t say that it gets worse than that really… I mean i’m sure there is something that is worse.. but I have a hard time seeing the bright side when it comes to that specific diagnosis.. heck, now after all this emotional trauma, I’d be elated to hear that it is MS, CIDP.. just about ANYTHING else!!! I just finished looking up MMN.. the new neuro did bloodwork for that too- it looks like it could be promising.. though my EMG that was done by the last neuro looked normal… but i’ve had 2 emgs, three people read them, and they all say different thigns about them each- they are so subjective, as is are all the neuro exams, tests it seems.. which is hard- i guess thats why people get so many opinions when it comes to neurological stuff!
    Well i’m glad you say good things about the neuromuscular center, I’m nervous about going! I am hoping maybe this neuro can get the LP done before I go to the university in januarary.. that way we have most of the testing done and they can pin down a dianosis if we haven’t already (I hope we already will have by that point, since i’m scared if we dont that means everything else was negative, and therefore ALS moves up on the list)… until then I”m trying to keep my mind off of it as much as possible – haha hence why i’m on here huh? but its impossible, when it effects your limbs and everything you do… I’m just goign to try to enjoy the time with my family every minute I can and hope and pray for the best until then.. and have serious emotional breakdowns in between i’m sure, as I have been the past few weeks!

    November 17, 2011 at 9:18 pm

    oh , i have one more question.. Since i’m in diagnosis limbo.. This is something strange i have noticed in the past few weeks, but really noticed today.. after muscle exertion, which comes along with serious fatigue i get numbness/tingling for a while afterwards more than normal (ie: my neuro today tested my muscle strength and it fagitued out my forearm soooo badly- and now from my forearm down to my entire hand has been numb tingling all day since.. my forearm and hand is soooo fatigued after that test its hard to move it at times, but the tingling is just impressive… this happens after i over exert or fatigue other muscles too) sound familar at all?? thanks agian for your time!

    November 17, 2011 at 8:41 pm

    thanks so much yall.. yea my reflexes have always been pretty brisk (In school we would always practice on each other,and everyone always got a kick out of mine being so brisk-my whole family is that way too though) now they are considered “normal” one neuro said they were a 1/4.. so they may be dminished compared to my normal.. but compared to their standards they are just “normal” defintely not diminished.. This neuro seemed pretty good, he isnt’ sure about the CIPD diagnosis at this time.. the latest EMG (by the orginal neuro- i’ve seen FOUR now in only a few months- mostly due to my PCP and obgyn referring me to different ones for further opinions- at least they are watching out for me, i do appreciate that)! didn’t show any signs of CIPD.. and this neuro said that usually CIDP should be pretty obvious on the EMG… he wants to do one himself here in a few weeks to make double extra sure (it will be my third in four months, but if it helps figure this all out i’m game)… He said with everything that preceeded this (the IUD debacle, blood transfusions, and GI/possible celiac weight loss craziness) that what makes most sense is that I had a predisposition or underlying problem that really showed its face thanks to all the physical trauma that happened in those few months (i was really malnourished.. lost basically all of my body fat- which isn’t alwyas a good thing, along with muscle diffusely). Of course I had a big ugly virus with high fevers and muscles aches right before the IUD thing happened too.. so it may all be cuased by this virus- coxsachie they think… I’m so sick of dr’s right now! but mostly i’m just so nervous about the really bad stuff like ALS… and to have an appointment with the university ALS clinic is REALLY scarey- its just they are the best neuromuscular guys around I guess.
    As far as LP goes.. I think they are going to see what all of this bloodwork shows and then talk about an LP here in a few weeks (still haven’t had one yet- no one has offered me one yet- they don’t scare me) especially if it helps figure out whats wrong! It’s just difficult to go on about my day without thinking the worst case scenerio right now, I’ll have a great day with my family and at dinner just break down with the thought of a motor neuron disease being a possibility ๐Ÿ™ ugh… this has been not only physically but mentally challenging!!! Thank yall soooo much for your replies, they are so helpful and helps me to hear yalls stories of success too!!! Did any of yall have fasiculations with your CIDP??? I have had them in my legs after exercising for a good 3 years, but they went crazy about 2 months ago all over my entire body..

    November 17, 2011 at 3:17 pm

    wow, all of yalls stories amaze me!! I hope that treatment has found yall some great improvement from it all! thanks again for your replies!!

    November 11, 2011 at 9:33 pm

    Jim- yea, i was taking 150mg of lyrica at night (thats what i had increased to) and only ever tried taking one pill (50mg) in the morning, or else I just can’t function as to being too sleepy.. I tink the whole being too sleepy thing was very beneficial though at night.. I hadn’t actually slept through the night in MONTHS (i was pregnant, then had a newborn who is now 8 months, and this fun started during all of that – so even though not long compared to most of yall, i was still craving some decent sleep)! I had about a week where i was sleeping finally- not waking up in misery with the feeling of my nerves being graded, and the whole asleep feeling.. well at my appointment yesterday the neuro thinks that now it is isaacs syndrome or BFS.. humm i have a lot of sensory issues too- especially to temperature, so he said to stop the lyrica and take tegretol, that it should improve my muscle strength and decrease the fasiculations (the fasics themselves aren’t very bothersome to me).. so last night was AWFUL! I miss my lyrica! I was back to just not being able to stay asleep- I go to sleep no problem, but minutes later wake in misery and just feel beat up come morning time. it makes for a LOONG night! and so far feeling NO better with the tegretol, though I understand it may take time.. but from what I understand won’t help nerve pain, which is what this feels like nerve pain and parethesias.. soo i’ll give it a try for a week and if i feel like this everyday and night i’m going back to the lyrica and sleep!
    Yea.. This past few months i have had a few dr’s just look at me with blank stares.. and when I ask what they think this all is they really dont’ know, which I understand, but to sit around and wait, and not at least try at least symptomatic relief seems a little unheartening.
    BigTree- I hear ya! The simple things that everyone takes for granted that have now become so difficult (especially for yall that have really had a tough time) have kind of made me back away from a few friends, which isn’t the right thing to do I know.. but with all of this on my mind and body like this (and the fear of ALS that the one dr had put in my head- not that I needed any additional help there) has made it hard to hear my friends talk about how stressful it was that they had to shop all day for their upcoming vacation, and that there maids were at their house at an unconvient time! ha.. sooo even though I know there is no way they can understand what i’m going through, I find it best to proably just not be faced with that conversation for a while ๐Ÿ™‚ Thank goodness for the internet where I can find people who can relate a bit !!! Thanks again for all of yalls help!

    November 10, 2011 at 10:24 pm

    Thank yall for your replies! It’s nice to know I’m not alone with that!! Those sensations can be so uncomfortable, and especially at night, waking up all the time with them is just no fun!!!

    November 10, 2011 at 9:51 pm

    Thank yall so much!!! Yea, it’s hard to know when it’s time to initiate a treatment like IVIG i think, I mean I guess one person can be fairly weak, but it not interfering with there activities of daily living all that much, while another may be less weak, but it interferes with there daily living more- depending on what they do each day.. I know i’m still able to do a lot, but to feel so lousy, and weak all the time is miserable, and hard if i can’t do what I went to school for so long to do or take care of the kiddos.. I had another EMG/ncv test today- now looks like no CIDP but benign fasiculation sndrome/isaacs syndrome (which i guess can cause percieved weakness and some weakness/stiffness) so they put me on an anti seizure medication which apparently can help the muscles function better.. so we’ll see! I’m hoping it will help! I’m just sooo thankful that this was a better/more detailed EMG/ncv test performed by the neurologist himself , and he said no als.. phew!! best words i’ve ever heard!!
    thanks again yall for all of your help and good luck, wishing you all of the best!

    November 10, 2011 at 9:46 pm

    phew…… well thank goodness!! 2nd EKG performed by a neurologist who did a more detailed study than the first guy (a physiatrist) said No Als…. best words i’ve ever heard my entire life! He is the same neuro that had looked at the “bad” emg, along with physical exam and thought maybe cidp… however the EMG was clean.. no motor or sensory deficit, so he doesn’t think CIDP anymore (otherwise I think we would have gone down the IVIG road sounds like). but he thinks its now benign fasiculation syndrome, or isaacs syndrome.. and put me on an anti epileptic drug. Since i have no “clinical” weakness he thinks maybe my fingers are just stiff like in isaacs syndrome.. so we’ll see, hpoefully this medicine will help. good news all around!
    Thank yall so much for all of yalls help though, yall have been wonderful!
    rdball- i know not only are neurologist so subjective on their exam (one can say my reflexes are normal, one slow, and one brisk etc), but an EMG/ncv test is so much up to the performers skill and interpretation.. ugh! I think thats why after that first EKG and one person telling me it was a poor study , that I began freaking out again a little bit!

    Thanks again and good luck to all of you!

    November 10, 2011 at 3:43 pm

    wow… it really helps me hearing all that yall have been through and yalls stories.. and i’m so glad it sounds like everyone is on the mend, and doing much better.. I am pretty scared right now.. I have started having tongue twitches.. speech is worse and swallowing is worse than it was a few days ago.. I’m headed to the neurologist here in the next hour, he wants to do another EMG/nerve velocity study (the first one I had was performed by a physiatrist, and this neurologist thinks it was a poorly performed exam) Now with the tongue twitching im completely terrified its something like ALS.. did any of yall have twitching in your tongue?? I have my two kiddos under the age of 2 years here, my hubby is going to watch them while I go to my appointment, needless to say i’m scared to go alone.. i’m just scared in general.. I’m hoping they think CIPD or something manageable is in the differential diagnosis after this EMG..

    November 9, 2011 at 3:16 am

    thanks so much yall.. It’s hard to shake the ALS thing until we can find another diagnosis… after a dr telling us he was concerned for it, with things progressing It continues to scare me.. especially with 2 kids under the age of 2yr..
    We are goign to call tomorrow and request an Lumbar puncture and to start IVIG.. i have a question for yall though- how “bad” do symptoms have to be before one “qualifies” for IVIG in general.. i feel all over weak, like concrete in my shoes and hands.. but have permanent never improving weakness in both thumbs and all fingertips..I notice with everything I do every single day, and I have a job where i must have good fine motor skills/dexterity.. I almost can’t do my job now.. but when the neuro tests for “clinical weakness” i pass all of their easy tests… i feel like they want me to have complete wrist drop/foot drop before trying a treatment for this all.. waht are yalls thoughts?? I just want to get better, and I don’t want to wait till i’m permanetly out of a job or have permanent dysfunction to get a treatment/IVIG started.. thanks again in advance!

    November 7, 2011 at 9:44 pm

    So exciting to hear about stem cell transplants! I am just curious about something (I don’t know a lot about all of this yet), but if you have a child who you banked their cord blood .. can they possibly use this for treatment of some sort for CIPD or other issues with their mother? just curious in case it ever came down to that… Thanks, and congrats!!!