Crystal's CIDP Story
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- Опубліковано 11 лип 2024
- Listen to Crystal tell the story of her journey with CIDP.
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I have cidp at my worst I couldn’t walk longer than 10 feet without having to rest, 4 years later after 2 years of infusion and prednisone I feel almost back to normal I do have some days where it’s uncomfortable to talk long distance but for the most part I feal normal everyday. Just want people to see there is hope that you can go back to a normal life if you don’t give up.
Excellent, honest video for someone trying to digest what their neurologist is presenting.
My wife has CIPD and has recently switched to trying Hizentra. She is on week two and we both feel she is back sliding a bit. She has done IVIG for 2 years now and her veins as well are worn out. We wanted to try this before going to the port however as most of you know it seems everything about CIPD is a day to day learning experience. Im her husband of 36 years now and was retired for one month before my wifes symptoms started. I really dont have anyone to share this with so i thought id give this a try. Knowing there are others with similar struggles is helpful yet still depressing.We both still have hope however as a caregiver now i do everything in our household. Much like Crystal..my wife is a fighter as well. God bless all of you Thanks for sharing your journey.
Im sure you are doing a great job with your wife. She is blessed to have you. My husband has CIDP it’s been very difficult for him to come to terms with his diagnosis. We are blessed that the IVIG as it is working.
I am a fellow sufferer of this insidious disease. I hate it, it has ruined my life. I was a Dancer a Martial Artist, Runner and a Hang Glider Pilot with 900 hours piloting Planes. I pray desperately for a cure. CIDP I HATE YOU! I WANT MY LIFE BACK!
Ruined mine too. I sympathize.
Lol. Accept it, imagine being a caged chicken? How much of a life is that?
@@greppit wtf? troll.
this almost killed me. Thank you for sharing your story.. I am newly dxed after 35 days in the hospital. I can one finger type now😮
Thís is a horrible disease
You go girl! I am a fellow CIDP fighter with similar symptoms. I'm still working and trying to keep a positive attitude, but it can be a struggle. I've had my ups and downs, I couldn't walk at all without a rollator walker a year ago and was hospitalized a couple of times. By this fall, I was back to riding my bike up to 16 hilly miles. Recently I'v had a bit of a set back and am walking with a cane. I'm not giving up, just like you! Keep on fighting the good fight!
i have cidp to
Greetings from Wales.
Thank you, Crystal for sharing your CIDP story. I, also had very slowly developing symptoms, and looking back, they started several years before I retired at the age of 66. A few months after I retired, I reported very odd and unpleasant symptoms to my doctor, and to cut a long story short, following thorough tests at a neurological centre, I was diagnosed with CIDP. Two things which have been of great help:
The first help: I have always been a good swimmer, and regular swimming - 1 Kilometer per session - really helps me. I feel fitter in the water than on dry land. In the water, my weakened legs don't have to support my body weight. Also, in the water, I don't have balance problems. On dry land, my balance is quite bad - I can no longer ride a bicycle, and I used to love cycling.
The second help: Nordic walking, using proper Nordic Walking poles (not trekking poles, which are different). I often take my poles out with me, even if I don't have to walk far. Nordic walking exercise is beneficial even going to my local bus stop. NW is easy to learn, and you can develop exercises even for the arms, shoulders and lungs. I do my NW on flat even ground. We live on the outskirts of a seaside town that has a 2 mile long promenade, and so that is ideal for NW. NW poles are also useful as disguised walking sticks ! NW helps me to walk properly. With painful, burning legs and numb feet, it is not easy to walk properly unaided, and in order to minimise discomfort when walking, it is easy to lapse into a 'shuffle' . The trouble is, too much 'shuffling' can become the norm as far as the brain is concerned, and shuffling around the place can become automatic even during periods when the legs aren't playing up so much. It is also bad for the whole skeleton, and poor-style asymmetrical shuffling can cause further troubles. Using NW poles can help to prevent you from staying in shuffling mode. They are a great help in maintaining correct walking gait. I am now 71 years of age, and am still swimming and Nordic Walking. Yes, the CIDP is still a hell of a nuisance, particularly the brain fog and the fatigue, which really get me down at times (socialising is difficult) but without the swimming and the Nordic Walking, I would be in a much darker place.
CIDP/GBS should be added to the blue book of disabilities for SSI and SSA because working on this disease is damn near impossible
Yep. I lost my job after taking an extended leave while being passed around doctors trying to figure out what was wrong. After about 7-8 months they narrowed it down to CIDP.
Dr. Elvis H. Christ I’m so sorry doctors failed you and that the support system of our country is so flawed. I should by common knowledge how to apply for medical leaves and and government support. Honestly it should be taught in school
@@allieuncharted I was on FMLA. My leave ran over the 12 weeks. Eventually my employer got tired of waiting since they had a client to support. Apparently my replacement is already leaving. They called me to see if I could come back. In this condition I really can't work a regular job. I'm still awaiting IVIG due to the shortage. I've been wanting to see how I respond to that before I give up completely to go on disability.
School for me ended almost 40+ years ago. It was just as much a joke as it is now.
Dr. Elvis H. Christ I’m facing a difficult situation as well. Having to switch career with the catch-22 of experience while treating my MS with all the necessary medical appointments that come with it.
The system is stacked again those who are sick or disabled. And tbh it’s rare that SSI or SSA pay enough to cover the person’s living expenses
To have a name for “IT” would be a huge blessing
I lost my Dad to this on May 13th 2018 to this disease... Diabetic with cortico steroids took out his kidneys with creatin at 11 and urosepsis. while the doc says we did more than what we could.. his death haunts me to blame myself for the guilt of doing less for him... I comfort myself saying his death relieved him of his trouble.
I am so sorry for your loss, Roshan. I have CIDP and I am pre-diabetic. My neuro was very concerned as it's a difficult combination; two diseases processes working on peripheral nerves. Diabetes is an extremely serious illness. CIDP has limited treatment options, and they are all very harsh on kidneys. Regardless, I've been there. Feeling I could have done more for someone. I hope you have found peace since your post that you did the best you could do, under the circumstances.
@@bethp.5861 I have also been diagnosed with type 2 diabetes and a month after starting treatment for the diabetes I came down with CIPD, I was also diagnosed with a herniated disc in my lower back which compounded the pain and numbness. I wasn't able to sleep at night because the pain became worse. I'm doing research on solutions and the thing that keeps coming up again and again is going vegan. I love meat and I will have one last hurrah of eating meat and then I will try this vegan diet. I hope that it works.
@@TheRickytickytavy I've found the thing that most affects me is alcohol (it's a neurotoxin). My toes and feet would seize up, very painful. I am probably an alcoholic, it's hard for me to go a day without a drink, but I did cut my drinking in half, which helped. I have checked out a few on-line AA meetings. I don't eat red meat or pork, and very light eater of chicken, turkey and fish. I just bought the book "How Not to Die Cookbook," by Michael Greger, M.D. It's the sequel to the book by the same name, but I skipped to the recipes. He is vegan and has done many You Tube videos. I would like to start incorporating more vegan meals into my diet. There are a lot of good tips in the book.
@@bethp.5861 I to was an alcoholic when I was younger but I managed to stop quite a few years ago. I've been dealing with my addictions over the years and the last big one, smoking, I was able to quit as well, that was 5 years ago. I started to become more open to other healing beliefs and started working on my inner child and I have found that it is really helpful and I have started to feel better about myself. Alcohol is a big no no for diabetics but you know this. My uncle was diabetic and a drinker, it's what killed him in the end. I wish you much luck and strength on your journey. I'm always available to talk to if you want to do so.
@@TheRickytickytavy I live in Los Angeles, so there are a lot of AA meetings in the area (though a mix of virtual and in-person, at this time). I had a good 10 year stretch with no alcohol, but this detour confirms I can't drink like a normie. So, back on the wagon I go. Good luck with your vegan project. An Instant Pot is very handy for cooking beans. In the manual, there are time settings for soaked or dry. I soak mine first. This is Michael Greger, M.D. on auto-immune diets. He is a very animated live speaker, but this is still interesting. ua-cam.com/video/BfVMCf6S8lI/v-deo.html
Damn this disease I’m 25 and got a chronic version of this within 3 months destroyed me spread to my cranial nerves suffering deafness and also full body numbness and sensory problems
I was at the neurologist last week. He said I likely have it. It's been over three and a half years and I've gone downhill. I used to power walk to song. I can't do that. I rise out of a chair very slow because my legs are weak, on fire, and my balance is crappy. My toes have been numb for two years and my feet are getting there. My grip is gone. I drop stuff regularly. You mention how your muscles just start flexing all on their own, well my legs, fingers, and shoulders do that...ya, I have it, but I have a 3-4 month wait for nerve conductivity test.
I'm a basket case right now
Thank you for posting this and for sharing your story. I am recently diagnosed and still learning how much of what I have dealt with is not in my head. The memory you spoke of is probably the hardest - well that and exhaustion. This video helped me - and I love how you ended it. The Monty Python reference was perfect!
Thank you for sharing crystal!
How could anybody give a living miracle a thumbs down?! Those 4 people must have slippery sticky fingers!
Crystal, thank you for sharing with us. You're amazing. Blessings & much love to you. I love your Monty Python comparison.
You go girl!!
Prayers for better days for you & a cure for this horrible, insidious disease.
Without being to downbeat life stopped at 50yrs old, was a sports mad fit man Rugby, Cycling, walking, weights, then 9/12/15 life changed, GBS come into my life, paralysis neck down, being fed washed clothed.. So fast forward now, the last 14 months I knew something was not right with body, muscles wastage, worse fatigue, back and forth too doctors and Neurologist, kept fighting and moaning I want help and answers! So sent to different Neurologist and hospital for EMG test.. Neurologist too me "you have CIDP" and me "I knew it".. Balance terrible, Crutches, stairs steps are hell. 🙁 Anyone new diagnosed get as much information as possible and keep pestering health officials otherwise you be lost in the system.. Regards UK
Thank you so much for that video
Thank you Crystal. With love and respect :)
most informative testimony i saw. thank you!
Very inspiring! Thank you Crystal for sharing your story!
Crystal, This video really touched me. I don’t have health problems and when you said “I was cocky about my health” that really struck a chord. Bad health is so unexpected. You seem to have a great attitude. I’ll be thinking of you.
Excellent presentation. Bless you.
Thank you for sharing your experience with us
Felt...as if I m watching myself...❤️❤️
God bless you kristal🙏
Fellow cidp’r! I can relate to everything you went through. Diagnosed 11 yrs ago. Former stockbroker and had to give up my career.
You felt muscle twitching also🤔
Same! I used to be arrogant about my health too! I was super fit and vain. I also have the tinnitus. I look completely normal. My friends and family just think I’m depressed. They don’t understand what I go through.
Wow ! This is very intense
Thank you so much for taking the time to share your story! You are amazing! Love your courage and attitude! Really hope a cure comes your way!
Where is cure the c i d
thank you Chrystal from time to time we need reassurance "that we have not got a very big dose of inflated imagination".
my name is graeme, I'm now 76yo and have suffered and was diagnosed with CIDP about 19 years ago. I get IVIG every three (3) weeks an have done for the diagnosed period. I used a single point stick at all times at home, but when out it is either two elbow crutches or an electric wheelchair, unable to walk any distance. I used to suffer pain but that was made tolerable by 6-7 day Ketamine in infusions. My diagnosis seems to change all the time - don't think it will improve.......so my advice is just fight the "thing" every hour....and don't give up.....have seen too many people do that with disastrous results......cheers graeme
Good on ya crystal, you are such a inspiration, I have CIDP as well, thank you for telling your story mate
Thank you for sharing.
crystal, your story is my story. im every 3wks also. everything you said makes me think we are the same person!😅 that “boost” you speak of is soooo real!
ty for your story
So brave. I had GBS but luckily just a few residuals. Blessings.
Wow!! Thank you foe sharing your story Crystal. My story and journey are very similar in initial symptoms. CIDP has ruined my life to. At 50 life stopped and to go from a healthy active person to a person that wants to chop limbs off due to pain is sad. I want a cure I want my life back but I can not see it happening......
Your wonderful I have same symptoms GBS and sepsis survivor I’m 47 and your an inspiration and helping thousands with this video x
Thank you Crystal. I struggle with CIDP as well
Bendito porque no ponen las palabras traducidas en español por favor por favor Gracias
I saw the neurologist yesterday- I said "I feel like a torso with a head". They don't know whats going on but I think this is what I have. Funny, how your last words resonate with what I told neurologist.
Thank you, Crystal, for your story, I think I am a lot like you in not excepting the fact of what we have. Gerald
@Gerald Granstaff I’m a lot like Crystal and you I had the horrible complication intercranial pressure due to high levels of protein in CSF which result in a lumbar peritoneal Shunt soooooo. We must keep on and fight the good fight 👍
You are the first CIDP patient that described what I call muscle twitches , when this disease was new to me they freaked out, that and the pin prick pains also. I found out the hard way that the longest I can go is 7 weeks between infusions or else major problems start my hands fail and legs last only a few days longer.
Yu also felt muscle twitching 🤔
Crystal ! I had GBS that ended in CIDP. I know exactly how you feel !! I’ve had mine for 26 years and get treatment (IVIG also) once a month at a chronic illness building. Thank you for sharing and hope you are still doing fine.❤️
Does ivig work?
@@bartuberkoz6239
its helping me return to normalcy. ivig is a godsend
God bless you! My husband has CIDP and his symptoms and experience sound really similar to yours. We need to find a cure for this complicated and difficult condition. ❤️
Terry Wahls Protocols
how old are you guys? I hope you're husband feels better
Hi Crystal, I was recently diagnosed with CIDP (April 2020). I am also 55 and was a healthy, active person. I was very proud of my ability to shred my way through powder and trees on my skis or weave gracefully down the mountain on my snowboard. My husband and I talked about how we planned on doing this til we were old and gray. Also like you, I am determined not to let this thing get me down. I am still hoping I will be one of the lucky ones and achieve full recovery and remission. Not selling my skis anytime soon! I wanted to also suggest something if you had not tried it. Since you cannot do the steroids I wonder if you have tried high doses of a high quality turmeric curcumin supplement? It is an AMAZING natural anti inflammatory. A couple of years before this happened I suffered a two year bought of a very painful medical issue that was never diagnosed and swept under the rug. According to everything I read up on my symptoms I believe I had PMR poly myalgia reumatica. But the drs insisted it was not. I KNEW that it was some sort of serious inflammatory response going on. A short term steroid treatment made it better but was ignored. Which in hindsight I’m glad to not have been put on long term steroids. I looked up natural anti inflammatory and pain options and discovered turmeric. It cured it! None of the OTC, or Rx strength anti inflammatory meds and topicals would even touch my pain. But Turmeric did. It got rid of the inflammation and healed me. When I would begin to feel a flare I would realize I needed to get back on the turmeric and it would go away again. I am hoping to replace my high dose steroids with turmeric with this disease as well. It’s early on so I have not had my neurologist and naturopath chat yet. But since you are not on steroids, you may be able to safely take turmeric to get control of the nasty inflammatory response going on in your body. It will need to be a good quality in high dose (3000mg per day) I sincerely hope and pray for recovery for you! Keep on kicking and biting!! Thanks for sharing your story. ❤️
🌻Christy, would you please give me the brand and manufacturer of the turmeric you take? I was just diagnosed with CIDP and can't take steroids because of my osteoporosis. Thanks much. Colorado cares.
Hi Jean,
I’m sorry to hear you have this nasty disease too. I have a couple different brands of turmeric that I can recommend. First is Qunol. It comes in 1000mg and has the pepper in it that you need for absorption. Same with Youtheory. Qunol may be the easiest to find. I have seen it at Sam’s Club and Walmart and Walgreen’s. I take 2 with breakfast and 2 with dinner. Be sure to take with food to avoid stomach upset.
Interesting that your drs. We’re smart and took your bone health into consideration and opted not to give you steroids. I was not so lucky. And since I was unaware of the risks, I did not question the drs. I discovered the hard way. In February I fell (snowboarding!) and broke my pelvis in 2 places as well as my elbow. Turns out I have osteoporosis. 😢😡😢 Knowing what I know now about prednisone and osteoporosis, I am very angry that my drs let this happen to me. They did not bother to check my bones before putting me on prednisone, ignored all my other risk factors and put me on high dose prednisone. I’m tapering off now after being on it a year. If they would’ve done their job and checked my bones at any point, I would’ve known I had developed osteoporosis and would’ve stayed off my snowboard. And they should’ve informed me in the beginning of the serious risk of developing osteoporosis and should’ve had me taking supplements and getting exercise and whatever else to help prevent me from getting it! But they didn’t. And because of that I got really hurt and had to spend more time in the hospital and was back down again and unable to walk again for weeks. And not to mention all the medical expenses to add to all the hospital, ER and dr bills from getting CIDP and then bilateral pulmonary embolisms from Covid. I had been through enough. The broken bones should never have happened to me. From healthy to a wheelchair, then strong enough to snowboard and then broken. But my bones are healed and I’m doing really well again. Thankful to be walking and “mostly” normal again. I of course have my good and bad days.
May I ask how they are treating your osteoporosis? And how are you doing with the CIDP?
My wife had CIDP it left her here she can never walk again and those short term memories has caused her to not remember any thing this hit her at 52 year old she now 54 and we been in and out of hospital over this last year prior that she spent 6 months in ICU
You're telling my story. Cocky "I'll run marathons til I die." Then, I started falling over. Spectactular, Keystone Kops falls. Memory loss after running a medical facility. Mixing up dates/names/words, and NOT EVEN NOTICING. I'm now on IvIg, and at least some relief from pain. So much grieving - I do just want to be me again.
Which period you was suffered and now how much you recovered?
"Get back 'ere, I'll bite ya legs off!" 😂 brilliant! I get very similar symptoms to this :( been thinking for ages it might be fibromyalgia:(
Nope not fibromyalgia CIDP two way different disese
omg my doctors said fibro for years and years. It didn't matter the symptom, sore toe, runny nose...fibro. Such bs.
❤❤❤❤❤
Was just diagnosed with CIDP yesterday but took forever to diagnosis
I have CIDP and the comparison to the dark knight is a good one. But like the dark knight you have to say to yourself never give up. You may not have the life you had but it’s not over. Show the world it’s not going to beat you down.
Did you have a lot of viruses or a period of sickness before you were diagnosed or started feeling the numbness symptoms? I had rsv, strep and mono 2 yrs ago before i got my cidp.
❤️❤️❤️❤️❤️❤️
I have been trying to get diagnosed for almost 16 years but the dr's and neurologists I've seen have never heard of CIDP. I now only have use of my left arm and both legs have no strength. I am in a wheelchair. I am having trouble with swallowing, breathing and my voice. Has anyone else lost their voice and then got it back? Every time it happens it's worse and my voice doesn't come back as strong. I'm terrified at this point. Can anyone help?
Why do they always show people with good outcomes. What about people with rare axonal variant of CIDP. Some people can’t walk ever again and are waiting to die in agony.
Being There I hear you! This was before I had a terrible exacerbation in 2018. I was paralyzed for 6 months. I had to learn how to walk and write again. I’m not what I was when I did this video BUT I’m still a fighter! CIDP is no joke. I’ve decided to help others with this disease and it helps me. Believe me I HEAR you.
Terry Wahls Protocols
Is this different with GBS AMAN ?? My father had been diagnosed with it..
Any CIDP PATIENT here who recovered completely?
Please tell because I'm also suffering from last 3 months
I've had tinntius since 2016 and it's only been the last 2 years that more and more symptoms have been added and now I can see this is EXACTLY what I have. I've got all those symptoms now. Started with just tinntius for a few years, then left elbow pain which spread to arm pain then fingers tingling then unrelenting neck pain slowly got leg fatigue & weakness can't climb the stairs or rise from a chair properly. All the while cognitive fog and loss then unable to remember words for things now. Forgetful. Exhausted but can't switch off both in brain and nerves. Tingling feet with sudden taizer like pain in them at night. I feel like I'm short circuiting my whole body. Can't stand lights and noise. Tingling between shoulder blades. Twitches. I'm 48 next week and I want to die this is horrific and really scary.
I'm in the same boat as you. I was amazed at how quickly life can go to hell.
You diagnosed with CIDP already or still 🤦🏽♂️
Can the port stay in forever?
How about 25 years before diagnosed. I begged to go and see a Neuro Dr. But my PCP REALLY Sucked. After years of suffering and my left foot swelled up so bad with a bump on top and could not work any more he then sent me tp a podiatrist. He sent me off right to a Neuro and then diagnosed, I did the IVIG or years but now I do not due to the possibility of the Covid shot being in it now due to the people that donate the platelets probably got the STAb. I did not. So now I just try to get by using Prednisone since 2019.
But now I am getting so bad I may give in to the IVIG, what ever the outcome. Quality of life really sucks right now.
Ive been diagnosed with CADP which is very similar to CIDP but i dont have your symtoms and its nt that serious
My 42 year old cousin just passed away day before yesterday I was told due to liver complications from her cipd treatment methotrexate which I was on too for my autoimmune disorder and my dr cut me off of it bc it started damaging my liver in the first month her mom died at 34 from breast cancer and her moms 2 sisters (my mom, and their baby sis) both have daughters (me and my cousin) and we both also have autoimmune disorders so we have 3 sisters who had 3 daughters with 3 different autoimmune disorders but they say it’s not genetic right? I don’t buy that bc we all have autoimmune issues and I have been having cipd symptoms for about a month now but because my autoimmune disorder is psoriasis my drs sending me to a rheumatologist to get me checked for psoriatic arthritis but even as I’m typing this on my phone my muscles in my forearm feel weak and my hands starting to tingle I want to drop my arm
I'm sorry about you're cousin I'm 42 years old too , and I don't know if I have this thing but I feel weird stuff in my hands and my feet I stop drinking and start taking suplements
I have twitching all over body . Is that a symptom. Fasciculations
OMG! I start my treatments tomorrow. I am a nurse and a CRA working in Early phase oncology and CAR T studies. I’ve been having brain fog for the last few months. I am still working remotely and you have validated so many of my symptoms. I’m still in denial. I can no longer run. They want me to use a cane and I feel devastated
Hello my name is Rafael Diaz and I have been fighting this CIDP for about 20 years and there is a cure for this.
This lady sounds like me.
you know what inshallah i ll the half marathon and send you a postcard
I always thought the numbness in the lip was due to pinched nerve from a have seizure. I was a runner growing up and active mom of boys and when my body went out my hands were gone and feet. I hurt I cry am not doing well. I actually thought about ending my life two yrs ago. this is not where I wanted to be. I just had my second LP today. I had my first one back in 2012 and now the disease has progressed to a flair that has caused the doctor to believe that there is also a second disease hanging out and maybe an infection that keeps putting me in the hospital. My heart rate continues to be low and my pain is terrible and my BP is low too so the hospital folks can't understand but of course, my NERO does but the ER thinks I am Crazy.
I have lost a lot of muscle in two weeks thru out my legs and feet and the spasms are crazy. Dr. LaGank In Cullum Al Is my Nero. He has me on IVIG, I get the heaviest amount in his treatment center. I am every 30 days. I get three large bottles and one small bottle and it takes six hrs. I do get sick, but I don't know what to do, but my mother and her husband need me. I help her change his diaper then Ill go back and lay back down. I do drink a lot of water thou. It's hard to explain, to people my husband thinks he understands I am ok, but he has no idea, but I am not ok by a long shot with it. He knows the disease is progressing and not getting better. DR Lagank explained to him that some CIDP patients become wheelchair-bound and don't go back to there former selves. He told us that CIDP is not that well understood and its only been look at studied and talked about, good enough to get people tested more and diagnosed in the last 10 yrs.
I have a life I can be happy about that. It's is not what I wanted and I spent thirty yrs with my husband planning and working hard along with side him, for a dream that he will and I will never get and I am left feeling guilty for taking that away. This disease takes way more than just walking and your hands and feel of parts of the body. it takes your love of living. I can't take the heat, I can't take the pain of sitting with family and friends outside.
I'm in the same position as you. I recently thought of suicide as well. It's a good thing I don't have the courage to do it. Many sleepless nights and a lot of pain. I'm trying to hang on.
Madam,
Cidp patients won't have fasiculations,if you are having fasiculations it is ALS
You can have twitching muscles, and myoclonic movements and it doesn’t mean it’s ALS