My name is Mike and im 22 years-old. Over the past year my left leg has caused me some problems. It started out as just a minor thing you know something you just push off and say "it'll get better". well, it didnt. It actually got worse, really worse. So about 8 months ago I started wearing a knee brace because I thought it was my knee. My walk was off, and I really didnt know what was going on. Everyone keep asking me, "are you okay? Your walking different." At this point i began the "make up something to justify this" phase. I started to blame it on a work related injury because I work at a warehouse it it was easy to tell people that rather than " i dont know what happen." But the truth of the matter was, I didn't kno what happen! So about 5 months ago i made an appointment to see a dr and get an x ray on my knee. Results came back nothing wrong with my knee and the dr didnt know what was going on but she made me an appointment to see a phys. therapist to help build the muscle loss. It was at this point the phys. therapist recommended I see a neurologist. But Due to the fact of me quitting my job I no longer had health insurance also with the birth of my daughter, the process stopped. During this time my walk became very severe. It was as though I had significant damage to my left leg but from what? i developed drop foot. my mom is a nurse and she helped me diagnose myself.I orded a full a.f.o. brace to help counteract the drop foot. 2 weeks ago I started the process again,this time at a different hospital under my mom's insurance at kaiser. I seen a neurologist which scheduled me a mri which showed increased signals to the T2. She then told me about cidp and othe isues. I have an mri on my brain, an emg, an mri on my chest, and a spinal tap scheduled this month. Can any one help me out by telling me if this is cidp and how to deal with it.I mean im going through some physiological things right now. I was a popular kid in high school now when I go outin public my walk looks as though I've been shot! I rarely go out due to this.
The diagnosis was not confirmed in me until an EMG,sural nerve biopsy and lumbar puncture.My paralysis was all over 83% so a very different presentation to you.
One thing I've learnt from this site though is that how different we all are individually.My GP classifies me as neurological "other"!
Good luck.
There are frequently more symptoms, besides foot drop. Do you have pain? Often CIDP affects the sensory nerves as well as motor nerves. Do you have tingling or numbness? My ring fingers and pinkies are numb and tingle. Is it affecting both legs/arms? CIDP is symmetrical, affecting both sides equally (though my right foot doesn't have foot drop, but everything else is pretty equal). Are you getting weak? Are you losing muscle mass? I lost 50 lbs of muscle, when this hit me. Have you lost your reflexes? This was the final piece of my diagnosis.
Those are parts of my story. We all have the same basic story, but with variations. I went through 5 MRIs, multiple Xrays and CT Scans, blood work, EMGs, and a spinal tap to get to this diagnosis, and yes I presented it to my Neuro, who agreed.
As far as leaving the house...I went through a grieving process. I refused to believe it, at first. Then I gave myself false hope of instant recovery. Then I got angry and sad. I cursed god and said "Why me?!" Then I started the fight. I was determined to remove my roadblocks. To heck with what other people think. This is me and I'm doing the best I can!
My brother saw me walk and told me how he used to think about people who walked like me and he regretted it now. I've got a great support network who make me feel good about myself, despite my feelings that I'm a burden or I'm useless.
We get past the bad feelings, but maybe we need to feel them at first. It's not easy, but I'm spiritually/emotionally/mentally stronger than ever. The life I had before is gone, but I've got this wonderful new life.
Mike, you're a young man. Your chances of getting past this are very high, compared to an older guy like me.
Take heart! It sounds like doctors have you on the right path. My son was diagnosed with CIDP at 16… He had this “mystery” illness, looked like a rag doll trying to play soccer…couldn’t walk up stairs or get up from chairs without great effort. He has been on ivig treatments for almost two years and is perfectly “normal” otherwise. The treatments STINK but they work and we thank God for them!! I hope you will get a proper diagnosis, treatment and relief soon! His disease began as Lyme disease and i am so convinced that what began as Lyme triggered this auto-immune response, manifesting in CIDP… It is my theory that much of what people are calling Chronic Lyme is really CIDP or another Lyme triggered auto-immune response.
Hi Mike,
Welcome to the forum. I'm glad you found this site and I'm sorry for your health issues at such a young age, but I do think you have to be a bit patient and have the rest of your tests done. As Shawn said, CIDP is symmetrical, which means the symptoms occur on both sides of the body--not always equally so--but that is a hallmark sign that the numbness, tingling, weakness, etc occurs on both sides. As you described, yours seems isolated to that one extremity, although over time whatever the condition (or injury) is it seems to have worsened for you. My clinical diagnosis of CIDP was made by EMG results, multiple exams by a couple of neurologists, and finally a high protein reading in my spinal tap. Since your Mom is a nurse I'm sure she's counseling you to be patient and get the tests done and see what the diagnosis is before you start envisioning a life that might not be as bleak as you imagine.
Good luck to you and please keep us all posted!
Welcome Mike.
Since only about 7 or 8 in a million get CIDP, finding doctors that have even heard of it much less diagnosed and treated it can take some time. That can be frustrating especially if you are getting weaker every day.
Your attitude and determination to live your life on your own terms is every bit as important as the medical aspects. Don’t worry about what strangers think.
You WILL get this under control.
thank you so much you guys. just hearing minor details about your various symptoms give me the strength tp push forward. my symptoms are not symmetrical they are only in the left lower leg. my hands are always numb and sometimes cold. i have reflexes. the neuro dr did the hammer to knee thing and my leg jumped up. i think you guys are right patience is the key at this time.
Mine started in the right foot or at least that is where I noticed it first. It came up my legs like sinking in quick sand . The fingers and then up past the elbows. I wasn’t tracking the speed but It was definitely like a cloud coming over me… I was fighting respirator problems. Extreme fatigue, thyroid problems, polycythemia . Things that I had never experienced befor in my life . I had lost so much feeling that I couldn’t tell if I was injuring myself because I couldn’t feel.
even if not CIDP it could be one of the variants. The MRI'S should diagnose or rule out MS. you've likely read the medical info on this site, it does help to be informed especially with these rare diseases. BEST WISHES.
Hi Mike,
I have CIDP and I live a perfectly normal life. Once I was diagnosed and started treatment most of my symptoms are under control and I only have minor issues to deal with. Don't get too frightened because most people with CIDP do go on to live a normal life with some adjustments for treatment. Remember you are on this forum right now because you are experiencing symptoms and don't know what to do. Well for every one person on this forum having horrible symptoms and issues there are thousands of people like me that hardly visit the forum because we don't think about our disease as much and don't visit the forum. So please do see a neurologist and get a proper diagnosis and start treatment as soon as possible. Hopefully you will be one of the lucky people who respond to treatment as I did and can go on and resume your life to the fullest. I do have to have IVIG every 21 days so I sometimes get annoyed that I have to miss things on that day or plan my life around the infusions. I only get mild side effects to the IVIG so they don't invade my life too much. You are young and your body will probably bounce back easily once you start to get treatment. The longer you go without treatment the more permanent damage to your nerves will happen. So for now, concentrate on getting a good and proper diagnosis so you can start treatment. I was devastated at first from my diagnosis. I had a young daughter and I work full-time and I am the only one pulling a salary so I was very frightened that I would have to go on disability and not be able to be as involved in my daughters life. Now, 3 1/2 years after my diagnosis I am doing great and still work 10 hour days and go to all my daughters life events. I just find I need to rest and take care of myself more but that isn't so hard. Good luck and don't fret so much - life is not over with CIDP, just different.
I have CIDP and I have had:
√ - footdrop
√ - distal & proximal neuropathies moving slowly inward
√ - major loss of strength in all muscles (fatigue)
√ - gait problems and knee problems
√ - cramps in calves !!!
√ - stiffness in arms & legs (24/7)
√ - fasciculations (24//7 twitches)
√ - lumbar area pain
√ - phrenic nerve involvement (breathing)
√ - optic nerve involvement
Everyone with CIDP will eventually have different symptoms because the autoimmune attack by B, T cells and macrophages is on billions of nerve fibers, most covered with myelin sheaths. Action-potentials from the brain are an either/or situation: the axon either carries an electrical charge or it doesn't. Remylination of damaged nerves axons is possible when your IgG antibodies are over whelmed by other Iv-IgG proteins complexes, plasma exchange or steroids.
Without treatment most people succumb to CIDP's slow and insidious destruction, which happens in its own time and place with very little logic.
I had all the tests you mention. It took me years to get the proper treatment and find sensory and motor muscle relief.
The spinal tap may show elevated glycoprpteins if you have CIDP. A biopsy of that tibial nerve in the leg with the foot dop may also give a clearer diagnoses. Also, do you have hand weakness and muscle loss with deep depressions on the top of your hands? A neurologist usually will examine the top of your hands very carefully.
BTW- I was shot once, with a shot gun. I was in high school. I grew up quickly.
The foot drop may be fixable if you don't have major sciatic nerve/muscle/ spine root nerve destruction... but get with it. At 22 you're much more susceptible to treatment and rehabilitation. If the foot drop is not fixable, get a custom-made a.f.o. or you will regret having a cheap one in two or three years. Come to think of it, your knee problem hay be caused by the foot drop. Eventually the foot drop can effect nerves and muscles all the way up to the top of the trapezoid muscles (your skull) with pain and dysfunction.
And, if it is CIDP, you will go through some heavy physiological issues. It is chronic and it won't go away. Accept the diagnoses if it is CIDP and charge ahead, read everything about this disease and smile at adversity!
Lap swimming has saved me many times!
I have had every symptom listed above so I don't have much to say except I think you're in the right place, so welcome. Gary
I'm new to this stuff, in fact i've just been been scheduled for my first treatment: three successive IVIg infusions over three days.. I'm apprehensive bec I'm 78 years old and I am a candidate for some renal issues. I'm a retired MD so I'm used to giving advice and treatments not getting them. It takes some humility, acceptance, and a lot of research. Glad I've found this group. I have all the usually signs and symptoms + some autonomic stuff. I'll be back for more.
My husband has CIDP and Prostate Cancer and is getting weaker every day, has had 2 sessions of IVig Infusions, didn’t help, he is in pain 24/7, wish I knew what to do!!
I'm so sorry to hear that . Did he receive chemotherapy? If so, the CIDP may have been the result of that therapy. Either way, the combination of Lorezipam, Hydrocodone, and Gabapentin is often very helpful. It helped me.
Carol Wright said:
My husband has CIDP and Prostate Cancer and is getting weaker every day, has had 2 sessions of IVig Infusions, didn't help, he is in pain 24/7, wish I knew what to do!!
Hi Geeps!
I"m guessing you've had (or will be having) kidney function tests prior to starting up the IVIG? Do you mean you're a candidate for getting renal issues? IVIG is hard on the kidneys and of course at your age you need to consider the risk/benefits ratio. If it's pretty clear you have CIDP then IVIG is probably the best option.
I had one episode of aseptic meningitis when I had my first week loading dose but after that I have not had problems since they added an extra liter of saline and pre/post solumedrol and benadryl to my mix. I also drink a lot of water on infusion days which are now two days every 3 weeks.
I'm interested in the "autonomic stuff" you say you have...can you elaborate?
This site is great. You will find a lot of answers and support here.
Thanks!
Geeps said:
I'm new to this stuff, in fact i've just been been scheduled for my first treatment: three successive IVIg infusions over three days.. I'm apprehensive bec I'm 78 years old and I am a candidate for some renal issues. I'm a retired MD so I'm used to giving advice and treatments not getting them. It takes some humility, acceptance, and a lot of research. Glad I've found this group. I have all the usually signs and symptoms + some autonomic stuff. I'll be back for more.
By autonomic stuff I mean the autonomic nervous system that controls those things that happen automatically like gag reflex, sensation of full bowel and bladder. blinking your eyes, cough reflex, sneezing, & most of those "things" that go on in the abdominal and chest cavity. My symptoms include disturbances in bowel and bladder sensations, drying eyes, and some intermittent gaging on liquids, slow movement of solids down the esophagus. My risks of renal impairment are greater only because of age. My chemistries are all normal and my first IVIG will be prolonged over more hours and more days. I'm going for it!
Cookie said:
Hi Geeps!
I"m guessing you've had (or will be having) kidney function tests prior to starting up the IVIG? Do you mean you're a candidate for getting renal issues? IVIG is hard on the kidneys and of course at your age you need to consider the risk/benefits ratio. If it's pretty clear you have CIDP then IVIG is probably the best option.
I had one episode of aseptic meningitis when I had my first week loading dose but after that I have not had problems since they added an extra liter of saline and pre/post solumedrol and benadryl to my mix. I also drink a lot of water on infusion days which are now two days every 3 weeks.
I'm interested in the "autonomic stuff" you say you have...can you elaborate?
This site is great. You will find a lot of answers and support here.
Thanks!
Geeps said:I'm new to this stuff, in fact i've just been been scheduled for my first treatment: three successive IVIg infusions over three days.. I'm apprehensive bec I'm 78 years old and I am a candidate for some renal issues. I'm a retired MD so I'm used to giving advice and treatments not getting them. It takes some humility, acceptance, and a lot of research. Glad I've found this group. I have all the usually signs and symptoms + some autonomic stuff. I'll be back for more.
Dear Geeps,
Yes, it does seem weird how this condition affects the autonomic nervous system functions as well as the periphery. I am plagued by the feeling of an abdominal binder around my midsection, supposedly caused by the CIDP, which seems to coordinate with my long-standing irritable bowel symptoms and between the two issues, it makes it impossible for me to forget I have this condition. Of course the cramping in my calves and the pain in my back try their best to get my attention also!
Yes, of course you should go for the IVIG! For some people it is a godsend, and you may well be one of them. From everything I've read (and I have done an exhaustive amount of research) as long as you are "healthy" otherwise, age is not a factor in consideration of treatment with IVIG. The other side effects of the immunoglobulin boost may make you feel decades younger too! In fact, that's what you may have to watch out for--I know the next week I tend to feel too good and do a bit too much and pay for it by having sore muscles afterward. It's all in getting to know your "new" limits with this disorder, and if you were active, it can be very prohibitive.
Good luck!
Geeps said:
By autonomic stuff I mean the autonomic nervous system that controls those things that happen automatically like gag reflex, sensation of full bowel and bladder. blinking your eyes, cough reflex, sneezing, & most of those "things" that go on in the abdominal and chest cavity. My symptoms include disturbances in bowel and bladder sensations, drying eyes, and some intermittent gaging on liquids, slow movement of solids down the esophagus. My risks of renal impairment are greater only because of age. My chemistries are all normal and my first IVIG will be prolonged over more hours and more days. I'm going for it!
Cookie said:Hi Geeps!
I"m guessing you've had (or will be having) kidney function tests prior to starting up the IVIG? Do you mean you're a candidate for getting renal issues? IVIG is hard on the kidneys and of course at your age you need to consider the risk/benefits ratio. If it's pretty clear you have CIDP then IVIG is probably the best option.
I had one episode of aseptic meningitis when I had my first week loading dose but after that I have not had problems since they added an extra liter of saline and pre/post solumedrol and benadryl to my mix. I also drink a lot of water on infusion days which are now two days every 3 weeks.
I'm interested in the "autonomic stuff" you say you have...can you elaborate?
This site is great. You will find a lot of answers and support here.
Thanks!
Geeps said:I'm new to this stuff, in fact i've just been been scheduled for my first treatment: three successive IVIg infusions over three days.. I'm apprehensive bec I'm 78 years old and I am a candidate for some renal issues. I'm a retired MD so I'm used to giving advice and treatments not getting them. It takes some humility, acceptance, and a lot of research. Glad I've found this group. I have all the usually signs and symptoms + some autonomic stuff. I'll be back for more.
If WE all know that CIDP affects these things, why don't our Neurologists?
Why am I on Flomax for an slow and intermittent urination issues, when it's a neurological issue?
Why did I go through the swallow studies, just to have them say there's nothing wrong with me?
I'm glad I haven't told them I can't control my gas.
Next time I see my neuro, I'm going to mention that many of us are suffering the same "sphincter effect" issues and tell him to add it to his list of CIDP symptoms.
The main thing for me is enjoying being able to walk again.The freedom this brings from paralysis comes from the IVIG.For me this trumps anything else but amongst old men the prostate should always be a topic for discussion with or without CIDP.
I had my 77th IVIG accompanied by a man with MS who is gradually going blind.
I count my blessings and remain forever grateful to still see the sunrise and the sunset.Just forever grateful for 7 years of life because of IVIG,complimented with medical cannabis.
Good luck everyone.