Well…. now maybe it is CIDP again!
November 17, 2011 at 3:25 pm
well… I was on here a few weeks ago, one of the neurologist I had seen thought I had CIDP (i had a long string of physically traumatic events etc that preceeded the onset of the symptoms). Well he repeated the EMG last week and said now the emg didn’t look like CIDP.. so he said I had BFS.. ok, but what about the weakness then? He said it was just perceieved weakness, i had no clinical weakness I just had muscle fatigue.. … I have had consistently worsening weakness for almost 10 weeks now.. i have muscle fatigue – yes, but my thumbs, ends of fingertips, knee and hips have been everyday weak with no improvement – i notice with my fine motor skills and walking being “awkard” anyhowl… my PCP wanted me to see a new neurologist today – a neuromuscular/neurophysiologist.. he says i do have clinical weakness, and that i may infact have CIDP afterall.. but at this point (i’m walking fine and am writing, its just weak) that I wouldn’t qualify for IVIG anyways.. so he ran A TON Of bloodtests!
the only thing he says doesnt seem to fit CIDP is that my reflexes are normal.. not diminished at all.. anyone else have “normal” reflexes.. or do you have to wait till it progresses to have abnormal reflexes??
He is going to repeat an EMG himself here in a few weeks, but in the meantime i’m terrifed beyond belief.. i’m 31years old with 2 kids under 2, and motor neuron disease/als is on the differential.. I PRAY that something comes back posistive in the bloodwork, or that his EMG will show CIDP.. just anything other than ALS.. i’m just a wreck 🙁 thanks again for all of yalls help!
AnonymousNovember 17, 2011 at 4:35 pm
Most people with ALS have brisk reflexes, and the EMG is generally very good at picking up the deneravation that occurs in ALS. How was your lumbar puncture? Hubby had a differential dx. of ALS back in 2007. But his LP came back slightly elevated which was good in the world of ruling out ALS. Hubby has dimished reflexes. Also, hubby’s good response to IVIG helped rule out ALS. Best of luck.
AnonymousNovember 17, 2011 at 5:58 pm
You might want to consider, yet again, a new neurologist or venture into seeing an immunologist.
For a neuro to say that someone’s CIDP isn’t yet bad enough to be treated is, in my humble opinion, a load of BS. CIDP should be treated AS SOON AS IT IS DIAGNOSED, no matter how far the disease has progressed. If you do have CIDP then every single day that you go without treatment, your body is being further damaged.
I’m sorry you are in diagnosis limbo. I hope you get answers soon.
AnonymousNovember 17, 2011 at 6:22 pm
I agree with Kelly. My back problems began almost four years and I had two doctors that knew about the spinal stenosis but told me that I since I had no insurance they would not help me unless I had 20K upfront.
I had to wait for two years to get my disability and finally got two good doctors to get the job done. The Neurologist is good. he did all the tests and I was told last week that I had CIDP. AS far as your doctor telling you that it is to early to have the IVIG that is “BS”. You need it to keep the CIDP from getting worse and have muscle loss like me. My reflexes were getting bad about six weeks ago and last week I had none. It seem to me that you are at the beginning stages of CIDP, but I do not know that much. Kelly is teaching me as are others on this forum.
Good luck in you quest to get something done.
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 🙁 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 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!
AnonymousNovember 17, 2011 at 9:21 pm
Bny, hubby used to have quite a few fasciculations. They seemed to lessen with the IVIG. I can understand your anxiety about ALS. The first neurologist hubby was referred was not so good–did his own testing and insisted hubby had carpal tunnel. We wasted 3 years with that guy and by the time we had enough sense to go to a neuromuscular disorder unit hubby was pretty disabled with atrophy (couldn’t use eating utensils, turn a key in a lock etc.). The neuromuscular disorder clinic was like night and day with the thoroughness of the testing. He had a LP within two days, had blood sent to Athena Labs for a sensory motor panel, EMG and nerve conduction testing by first rate technicians. We were scared out of our minds when he had the diff. dx of ALS so we understand what that feels like. I couldn’t even function normally for a whole summer while we waited for the referral to the neuromuscular disorder clinic.
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!
AnonymousNovember 17, 2011 at 10:58 pm
MMN was on hubby’s list too. His CIDP-MADSAM is motor and is very similar to MMN. I found that my husband just shut down emotionally during all the testing–scared to death. We were lucky to get immediate feedback with the neuromuscular clinic. The neurologist would come in during testing and say exactly what she saw. Very reassuring and helpful to have it done that way. Best of luck.
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?
AnonymousNovember 18, 2011 at 8:48 pm
bny, yes to most all your questions about weakness and shakes and tingles and twitches and shocks, etc. GET A SPINAL TAP!!! That does not ALWAYS give you the answer but most times it does. Make sure when you get it you lay completely FLAT afterward for about 6 hours. Don’t even lift your head, so you don’t get a horrible headache!
I felt the same as you last year. Symptoms started in Sept/Oct and I was diagnosed (dxed) in Dec, started prednisone right away and IVIg in Jan. have been taking it every 3 weeks and still pred also.
I am going to Chicago in a few wks for an evaluation for a stem cell transplant. You will learn about all these things in time, trust me. It just takes a while to absorb everything.
If you go on FB, check out “CIDP” and “CIDP and stem cell transplant” pages from your search bar. Lots of good folks there too!
God bless you and let him help you too!
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!
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