Prickly/water droplet sensations
May 8, 2012 at 2:10 am
Does Anyone else get prickly/ feels like sprinkles of water, but a little painful like ants sensations?? I have noticed since the last relapse that this is happening more – especially with activity or if I have been in the sun/heat.. it’s the wierdest thing! I kept having to check to see if I was actually getting rained on, or if i was getting bitten by fire ants… the lyrica helps a little bit with this, but not a ton.. anyhow.. Just curious!!?
Hope everyone is well.. I had another IVIG treatment and it seemed to really work great (it was the closest IVIG I have had yet – 13 days after last treatment instead of the usual 3 weeks).. however, I got meningitis AGAIN ugggh. i was SOOOOO miserable.. I think it was due to me being awake (working) for 36 hours so I came home and fell asleep and didnt’ drink enough water, I was just too exhausted- big mistake!!!
May 15, 2012 at 1:07 am
As I noted the other time I posted – I don’t post very often. But your symptom is very curious. I was diag’d 10 years ago with CIDP Lewis Summner variant. There have been many times that I have experienced the same sensation. Most always on my upper legs. Usually when its hot and I have exerted myself . Its a strange feeling but you describe it pretty well. For me its a kinda cold sharp prickly feeling. I never told my nero because I was afraid he would send me to a shrink. LOL
Two rounds of IVIG now on Rituxan.
May 16, 2012 at 12:02 am
dmcheney—do you mind sharing your rituxin experience? I am getting ready to start it and would love to hear others experience—-especially if they were successful with it!!! do you have the anti-mag or just cidp. I do not have the anti-mag but every rituxin post i have read seems to have that diagnosis. Did your Dr have you go through complete cancer screenings before starting—thats where i am at right now.
sorry bny–didnt mean to jump in on your post…havent heard from you in a while, hope you are doing well and continuing to improve on the ivig 🙂 Lori
May 18, 2012 at 12:25 am
I have CIDP (Lewis Summner Variant). I have Monoclonal Gammopathy (MGUS). Blood produces an excessive amount of the IgM anitbody. I have been through IVIG treatment (in 2010) with little change. The Nero ended treatment mostly all though 2011 except when I saw him in Oct 2011 and complained that I felt I was getting worst. He updated my NCS & EMG which indicated I was losing Axon. The oncology/Hematologist I then met with suggested Rituxan therapy. (He had already ruled out blood cancer). I had 4 infusions in Jan 2012 – one per week. The most significant thing I can tell you is that your body’s first reaction to or experience with Rituxan is key. The Dr told me if I didn’t react adversely to the medication right away I would be home free. However, my first infusion I had no problem during the 4 hour infusion, but when I got home I felt I had a reaction to the stuff. I got a fever and felt flu like symptoms and my skin was on fire. I called the Dr and he said “your ok”. I took some tylenlol and went to bed. Woke the next morning feeling ok. Now, the next 3 infusions went without a hitch – absolutely no negative reaction . The only reaction seemed to be with the Benedryl. Makes you feel pretty woosy. At this point I can not say it has done anything for me. What I have heard is that if it is going to help it may take 6 months. So I am being patient. I wish you great success. Dave
I hope this is helpful. Good luck
May 18, 2012 at 1:02 am
Yes very helpful Dave—-thank you. so did they go real slow with the infusion rate for your first time? My dr is saying 1000mg 2x in two weeks then repeat in 6 months. how many mg did you get? she said it would be more rituxin to do it by the standard 1000mg protocol then to go by my body weight, and thought hitting me right off with a large dose would make it so we could really tell whether it was going to work. Sounds good i guess, but makes me a little more nervous about having some sort of reaction to it.
did your dr say it should take just 3 rounds of infusions unless the cidp returns? Is MGUS the same as anti-mag?
I was wondering about the benedryl too. I dont have any reaction to the ivig, no headache at all—except for my first infusion when they gave me 50 mg of benedryl. after that i took only 25 and no headache. so i had more reaction to the benedryl than the ivig. do they give you a lot of benedryl with the rituxin? My ivig infusion nurse thinks they might order iv benedryl with the rituxin—sound like a definite headache and wooziness—better not plan on returning to work that day.
so will you have another round of infusions in june regardless-or only if you get improvement from the first round? is rituxin the first immunosuppressant you have tried? It will be my first. Are you tired of all these questions yet??? LOL thanks for sharing your experience—-people who have already been through it are so much more knowledgable than the Drs and nurses. I hope the rituxin kicks in for you and starts working–the axonal damage takes longer, i have axonal damage too. thanks again for the info. Lori
May 18, 2012 at 1:37 am
Thank yall so much for your replies!!! It’s always good to have other people to relate to so that (as you mentioned dmcheney)I don’t feel quite as crazy!!! 🙂 I can always tell when the sun is shining through the window onto my extremities since I feel those wierd senstions intensify!!
No problem Lori!!! I sure wish they had private messaging on this thing- Good luck with your rituxin!! When do you start??? Did you get any improvement with the IVIG?? I am now having my IVIG every two weeks ( I knew for a long time I should be doing that as I felt it wearing off before that 3 week mark… and then I got a cold from my kids and went pretty numb on my right foot and hands- it was like someone had injected me with lidocaine, it was crazy)!! When my sleeves or pants/shoes rubbed up against my skin it made it all more numb (so odd!!!)!!
I had my follow up with my neuro today, and I sware, I am SUCH a nervous wreck every single time.. I fear that this is the time they are going to discover I have something really really bad (I really think I have PTSD from my frist dr’s appointment when they said it might be ALS).. Anyhow it went great (my reflexes have continued to diminish on my upper extremities – they could barely get any response, and my right -most affected leg is still decreased- it’s normal now- I have alwyas had brisk reflexes all my life).. Gotta say when they tell me my reflexes are diminished I feel better about this all!!! But, anyhow it was all in all a good appointment. they are changing me to gammunex from carimmune since I develop a rash from the carimmune.. not that it’s a big deal, but it will be nice if i dont itch!) Keep me updated!
May 18, 2012 at 5:32 pm
The infusion rate starts at a reduced pace and then as you tolerate the Rituxan then they speed it up in increments. I reveiwed my billing and it had indicated 100mg of Rituxan and 50mg of Benadryl. I do believe they mix the Rituxan in solution so in total they give you more. 1000mg seems like a lot. In addition to web research you should try and review posts by Allaug and Norb. They have a lot of good info. They have discussed anti-Mag vs MGUS. There is a difference. It’s technical and confusing. I am an accountant and I believe researching neurology issues is like reading the tax code. It seems that the standard protocol is a loading dosage (for me once a week for 4 weeks) and then maintenance (for me that is – wait 5 months for the next infusion and then one every two months thereafter). So I had another infusion just last week. I would plan not to go to work. I have had only IVIG and the Rituxan. I was premedicated with claritin and tylenol. I had no headaches.
good luck again. Dave
May 19, 2012 at 12:10 am
Bny–i agree, i really miss the private messaging feature too—that way we could talk back and forth without intruding all over each others posts. that is good you got your infusions every other week now 🙂 hopefully that will help. Im back on the loading dose 2 days every 6 weeks–not really enough, but getting me through until i try the rituxin. should be starting in the next few weeks. due to the paraneoplastic antibody i have, the dr is making me do a full cancer screening before starting, upper gi, lower gi, pelvic biopsy—all joyous stuff–lol!!! i have never heard of carrimmune, have always got gamunex for ivig. good luck with it–keep me posted, i had no side effects from the gamunex, but then again i dont know if that’s such a good thing,because i didnt get better on it either???
Dave– i have read the posts you were talking about, Allaug had success with rituxin ,Norb did not, i also read Soapy’s–he kept a diary of his time on rituxin, he went into remission on it 🙂 so was the infusion you just had the beginning of your second round? yes i agree you practically need a chemistry degree to figure out some of rituxin talk–lol. I dont have anti-mag or MGUS but my igm and igg is slightly elevated, and i have a paraneoplastic antibody (VGKC). Im just trusting my DRs judgement on this rituxin thing, i suggested an immunosuppressant since im continuing to progress after almost 3 years on ivig and she chose rituxin. the protocol is different, mine is a higher dose in two instead of four infusions. Guess with the possibility of that much benedryl , i will plan on not working, plus infusing 1000mg at a slow rate will most likely take all day anyway.
im curious to see if you will see any results after this next round of infusions? did you get absolutely nothing with the first four? did you continue with the ivig once you started the rituxin? i’ve seen it both ways, some have both, my dr is stopping the ivig while im trying rituxin. good luck to you too–and thanks again for sharing your info on the rituxin. Lori
AnonymousJune 2, 2012 at 9:22 pm
I have to say I am thrilled to hear you have or had brisk reflexes as I do too…I am petrified of ALS. I have 3 young children and HAVE to be here to raise these amazing human beings. I think I also have some CNS symptoms, as I get dizzy and blurred vision. I am not weak yet, just super fatigued with muscle pains which come and go, twitching and lots of tingling and electrical impulses. Please let me know if you experience this too and I am hoping these are consistent with CIDP, not ALS. Best of luck to everyone on this journey!
June 2, 2012 at 11:57 pm
heathermansfield–I have twitching (fascilations), tingling and the electrical impulses and my diagnosis is cidp. Lori
June 4, 2012 at 1:50 am
heather- I hear ya.. I have a 1 year old and a 2 year old and have been sick since my son was 6 weeks old (he is my 14 month old).. The first dr I went to (on a friday afternoon) said.. I am concerned it might be ALS.. ok have a great weekend- see ya Monday for your EMG!?!!!! I was a SERIOUS WRECK!!!! I knew what ALS was and had secretly feared that.. but to hear a dr tell me that alone in a room.. it was so sureal I can’t even express! Anyhow that EMG was clean, well the needle part.. I had demylenation on my most symptomatic area (my knee at the time) hands had already been hit too… all my NCV were slow, but they aren’t sure if it was due to my extremities being cold or not..
I had three EMG’s by three different doctors within four months.. the last one at the ALS clinic in the university here… I was sure this was when they were gonna tell me it is ALS/MND.. at this point I had slurred speech and swallowing issues, knee/leg, hip, hand shoulder face weakness and visable hand/muscle atrophy and tongue atrophy…. NO ALS.. needle emg totally normal! My reflexes have been diminshed or absent in my upper extremities all along, and most affected knee is less than my less affected side.. however they are still brisk on both knees most of the time (it is such a subjective test.. i hate it-each neuro tells you your reflexes are different i swear!)
I have had fasiculations for about 4 years now.. just in my legs for the first two (and I had a numb right foot, i alwyas thought – my shoes were too tight, or when I would jog it would get worse up my leg- figured I had a pinched nerve in my back.. never thought much more of it).. now i have fasiculations EVERYWHERE.. though they are less with IVIG now.. tingling- heat makes this WAY worse.. i was in the sun today and i feel like i have prickly pear all over me.. pretty bad shocks all over (IVIG has helped this except when I have relapses).
It hit both hands of mine at the same time and I literally couldn’t text, scoop formula (had to give up breastfeeding at 7 months when I came home and pumped out water – I had serious GI symptoms before the neuro symptoms), hold silverwear or do my job which requires very good dexterity.. I can do all of those things now THANK GOD afer my second round of IVIG…
feel like I have been given a second chance at life.. though I still fear ALS very much.. i have ptsd from that dr appointment!! (sorry I ramble)
have you had an emg yet?
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