So. my new Neuro at the center of excellence at u ibversity of penn says I have a rare for of cidp called sensory.
can anyone help me out with info or personal experience with sensory cidp??
what treatments works for you? what was your most awful symptoms etc??
Thanks sooo much
I HOPE YOU FEEL BETTER AND HAVE A GREAT DAY
I, personally, have never heard of CIDP called ‘sensory’ CIDP. It does affect the senses, dulling feeling and reflexes. Perhaps this is a description of the nerves rather than a specific diagnosis.
A treatment which worked for me was a year long course of prednisone. It also carried negative side effects and I’ve gotten way better after the course was over and the drug worked its way out of my system. My worst symptoms are burning and cramping of my leg muscles, weakness, therfore not being able to walk. Muscle relaxers help. Swimming also helps to get back into condition after being unable to walk for several years prior to this remission. Stay as active as you are able, take precautions not to injure areas of neuropathy. For instance, I must wear something on my feet at all times. Also, foot care is very important to me. If I step on something, it may injure my foot bottoms before I realize it happened. Like a diabetic, healing is difficult. I see a podiatrist regularly. A regime of massaging feet with cream after showers and being certain to keep toes dried is important. Fungi is hard to control once it affects me. This may be a side effect of long time steroid use, or a correlation of the CIDP symptoms, I don’t know. But if left unchecked, walking becomes very difficult and deconditioning of the whole body takes place. It’s easier to try to preserve the feet rather then repair them. I hope this helps a little. I do not know if this is just me? Or have others with CIDP have similar experiences. Good luck!
I also havevSensory variant. My feet are completely numb except when they’re on fire. My right and burns and has pins and needles and the left is numb. I drop things constantly. I have severe cramps, even between my shoulder blades. Pain is uncontrollble. If I take a shower, I feel like I’ve been shot with buckshot. I am extremely sensitive to temperature Ganges, uffering a constant taking off nd putting on of lathing. Never comfortable. I get IVIg every eight weeks for two days, inpatient. My octor says if I want “simething fancy”, I need to o somewhere else. I am also blind. Grrrr
I have CIDP with sensory motor neuropathy and multiple nerve entrapments. Many neurologists are not familiar with CIDP and offer up strange variants of what the disease really is. With CIDP it is almost certain that a symptom or spinoff is Fibromyalgia - which makes us sensitive to noises, lights, a pea under the mattress… I was originally diagnosed in 1993 at the age of 39 as an incidental finding during a nerve conduction study. I am with the same neurologist who JUST started calling it CIDP. Anyway - sensory loss is absolute. Welcome to the club. I have been on SS Disability since 2007. I filed. No hearing. No lawyer. This disease comes up an kicks you in the … You go to bed fine and wake up injured. Lol. Go figure.
I feel like together we’re holding hands, one-to-one across the country. Thanks to this forum, too. I only wish it could be available in TaptaTalk, so I could see it better.
Let me add something … Your neurologist cannot treat this disease - he can only treat the symptoms. He/she works with your General Physician who is your ‘case manager’. When I am tested for ANYTHING I ask that a copy go to my GP and to my neurologist. Together they are my ‘primaries’. So when asked who your primaries are - you now have two. In addition to Fibromyalgia which your GP should treat (savella is fantastic - treats fibromyalgia AND side affect treats neuropathic pain) you may have Restless Legs Syndrome. Your Neuro will treat this. And cuboid syndrome in your feet - find a good podiatrist. This is when the TOPS of your feet start burning and affect your gait. Keep your sense of humor, though depression is common. Ride the wave. Good days and bad.
I did break my foot back on Sept 10th, simply went to get up from the couch and my foot didnt "feel" the floor.I went straight down on it and fractured the navicular bone. Walking boot did not help as I fell 3xs in 2 days with it on. Then the post op shoe was a joke. I now need surgery to repair my bone. In the meantime,my other leg and foot are starting to swell and hurt due to putting all the weight on that side!
I can not work, but I am in school training for administrative medical office. I struggle with typing and writing some days.
I WONDER IF I WILL BE ABLE TO WORK if a treatment does finally help me!?
Im only 39 and hve a 1st grader. I WANT MY LIFE BACK and want to be "normal" again~ :)
Do not be discouraged - we all want our lives back. But be thinking of a Plan B. You can teach from a wheel chair. You can teach with sensory loss. You can teach via telecommunications from home. You can teach about CIDP. You have a tremendous value to us all. Your vision of your life will take a shift. Nothing we do is a guarantee. So, like a tree, we can bend. For your benefit, if you were offering guidance to a student with a disability, how would you encourage their diligence? Now you are the student and the same self-talk applies. One day at a time. You are inconvenienced, but not without the ability to give your heart and soul to your profession. Yes, I too have sensory neuropathy. And there are worse fates. Just learn to blame your dropsy on gravity. I’m certain it’s getting stronger!!
Oops. I misread your profession. Typing is difficult. But intuitive software that converts voice to text is your best bet. What prognosis does your doctor give ? Does he believe you are permanently disabled? Does he believe you should file for SS Dbl? What was your previous occupation?
You can and probably should file for SSDbl. It takes so long to come through. They can pay 1 year retro to when you file. It’s done over the prone. The question is this - residual capacity. When all is said and done, after the pills, physical limitations, cognitive impairments are factored into the equation, what can you do? Could you do your old job? Could you type with voice recognition? What happens is you become unemployable because your employer cannot afford you - the accommodations, the time off, your medical needs. So you are left with limited or negligible residual capacity to make a living wage. Disability means you cannot perform in your previous job and your condition is degenerative. This is not a “death” sentence, but definitely worthy of a paradigm shift. Doesn’t mean you couldn’t be the next Stephanie Meyers. And there are VA degree programs. ‘Virtual Assistants’. You work from home. Search it on Google. Am I helping or discouraging? I hope the former. I will wait to hear back.
I’ve looked into SSD. Life would be a financial struggle with only that coming in. Im just about managing now,but this was planned out so I could get a new job. I was a Nanny but can no longer care for little ones. Im afraid to drop them and Lord knows I can’t chase a toddler. So im in school to get a desk job in a hospital setting where I would have great health insurance I was diagnosed after I signed up for school didn’t want to loose tuition and symptoms weren’t as bad so now I just sit and wait. I see neuro for eng on 13th…will have a better grasp on the situation then.
I used to work from my home doing medical billing, contracting,collections for 2 nurse midwives that I helped start their practice. My hands do not work well after a period of time due to the pain and I know that speed of data input is important to providers. I think voice recognition sounds like a great plan, I have only recently heard of it. I have been working in the medical industry for over 30 years(not recently) if there is anything I can do to help please let me know. I just recently completed my disability application now the waiting game.
First to JELLYROCK,
You've explained more in less than an hour than my 2nd neuro has in 6 years! I'll definitely show my new one your description of our shared symptoms.
After I try to explain my condition, and get that "blank" look. Like I've stated speaking Latin. I've found the weakness helps me resist the urge to choke someone.
Go ahead with the SSD now. There's really so little known about this. And one of the unfortunate results is there's not much actual financial help except that available. And the back time payment can be a big help. And and long as you have the paperwork you have applied for SSD (You get a nice big envelope just full of paperwork to fill out, once you apply). You will find that showing a form or two from SSD smooths over things considerably with debts and applying for other (local) assistance. Get in a bind for medication or help with things for your child. Try the Salvation Army. They have vouchers for medication once a year. One fortunate thing about the economy is people driving BMW's are using foodstamps. And most are on a "debit" type card so no one knows but you.
To anyone looking for additional income. I can help you out with some websites where almost anyone with a computer and internet can work from home. And no. It is absolutely not one of those cheesy work from home sites. I'm talking anyone with engineering to medical transcription to website development experience, or even data entry with no experience can find work through them. Though the fee they charge averages 10%. I've been doing it for years.
I am using voice recognition software to type this response it’s part of iPhone and it’s I have iPhone five but I believe it’s an iPhone 4 as well with the operating system upgrade to OS 6 so I’m just talking to my phone and we’ll see how it goes I’m going to get him to let it type now. anyone who has a disability Apple has put in their iPhones this voice software and am a lot of assistive touch in the system. There’s also voice recording like when I go to the doctor when I’m in the room waiting for the doctor to command I turn the voice recorder on and I just leave it in my purse it picks up the entire session and it’ll it will keep recording firstly I don’t know couple of hours IAA I don’t even know I’ve not pushed it to the limit but it’ll certainly handle the time you have to wait for the doctor and the doctor himself so you don’t have to Be embarrassed and turning on you know when he walks in the realm it’s just on and in your pocket or in your purse doesn’t matter him and then discreetly when you leave you can turn it off I abdicate for it I know it makes be cost prohibitive for some people but I would give up my television I would give up a lot of things him to cover the 50 or $60 a month but the iPhone cost me it it’s so well worth it. I decided not to edit so you can see how well it did.
I have both motor neuron & sensory CIDP, usually called "Lewis-Sumner Variant". I haven't felt my left foot in over a year, although with IVIG & PT I can now move it most days.
Im so frustrated! I made a specific plan to change my career. Went back to school to acquire the skills and training needed to secure a great job. Then…this “disease” comes from left field with a 1•2 punch and I feel like Im going in circles now. I don’t want to be on SSD, I want to be involved in my child’s schools trips to the Zoo but my feet swell like balloons after 15 minutes. My hands are almost useless as I drop most things or I won’t even attempt because I know it will just end up on the floor. My 6 yr old opens my water bottles!!! I feel so helpless. I was hoping that by seeing an experienced Dr in CIDP and getting the correct dx that I would see a light at the end of this tunnel but it seems as though I may just be entering and have quite a journey ahead. I had my IVIG today and of course still feel the same ,minus the 2 big bruises from getting stuck by “specialty nurses”. My feet feel like cement blocks frozen in ice and burn so bad. So red and swollen. My hands tingle and feel prickly…so annoying. Im so tired but that may be because I’ve been up since 1am. I’ve become an insomniac. I never sleep,im short tempered,my poor son sadly takes the brunt of this because im always tired and miserable and i just CANT PHYSICALLY do things with him. I try so hard to stay positive…I really do! But nobody has a clue as to what I face daily! I will continue with school and become certified. I can only pray that my hands and feet allow me to work and LIVE MY LIFE WITH MY CHILD! This is one of the hardest things to deal with, I am being robbed of enjoying these amazing years of fun and discovery in his life. Sorry to vent,
I understand your frustrations as I’m sure we all do.
I was diagnosed in June I got a promotion at work that I had been workings toward forever! The stress of the new job and my own health was too much for me to handle all at once between 12-14 hour work days, speech and physical therapy, IVIG treatments and doctors appointments. I had to take some time off so that I could focus on my health and adjust to a ‘new normal’ life. It’s been a difficult summer but I can say that I feel mentally much better. I’ve learned it will take me a little bit longer to do just about everything from typing to cleaning.
I had 4 rounds of IVIG then my neuro opted to try prednisone so I could improve faster. It has been 2 weeks of predinose and it’s been 5 weeks since my last IVIG treatment. I think the prednisone is helping (along with not working). I’ve been able to grocery shop, work outside clean the house and cook! All of these things seemed like the hardest and most daunting tasks earlier this summer. I think physical therapy and prednisone are helping. We are adding IVIG starting next week but I don’t know that I felt it helped much. Fortunately I haven’t seemed to have any side eeffects from the prednisone.
I think it can be difficult to tell if there are improvements with so many factors but my point is there IS a light. We have good days and bad days and with so little info available on this disease it is a difficult journey but it WILL get better and so will you.
Hang in there and enjoy everything you can! Best of luck!
I was diagnosed with Predominate Sensory CIDP. (yes, it exists) IVIG worked beautifully but I suffered a side effect so my Neuro had to stop giving it to me. Solumedrol (Methylprednisone) infusions every three weeks didn't do a thing. I suffer with pain everywhere! Feet, legs, hands and arms ache including numbness and tingling. Plasmapheresis is in my future but for now we're trying diet and exercise. Sensory CIDP makes balance difficult and could effect bladder, bowel, temperature, and blood pressure. The best advice I would give you is KNOW your limitations. If I overdue it (physically) it cripples me. Good luck ! Please share your treatment options with me !! ~Laurie
I have the bladder, bowel, temperature, and BP problems. My BP shoots sky high or drops way too low. My body temperature is 96 degrees and that’s “normal” now. I have a very narrow tolerable range of environmental temperatures, so I dress fom sleeveless to a sweater and two jackets. I empty my bladder on a time schedule since I can’t tell “when” I have to go. I get IVIg every 6-8 weeks for two days, inpatient because it makes my blood pressure drop so suddenly and unexpectantly. I am fairly stable as far as disease progression, but my life is less than satisfactory.