August 1, 2016 at 7:39 pm #111687Linda AlexanderMember
Im a 47 yr old female.
Ive was diagnosed by emg and sural nerve biopsy as having CIPD, an atypical sensory variant thereof. I say that because my experience seems to be very different than a lot of other posts as I can see and Im sort of not feeling so secure in my diagnosis.
I have oligoclonal bands in my CSF. I understand that means immune/inflammatory conditions in the Central nervous system and in fact I have a LOT of symptoms that I don’t see others really mention – neuropsychiatric (depression/sever anxiety/apathy), dizziness, constant head pressures/aches and most of all LOADS of cranial nerve symptoms. I don’t have the electric neuralgias that you usually hear of but I have atypical burning, pulling ,tugging, cramps, twitching and spasms in my eyes, throat, tongue cheeks, palate, gums, teeth, etc. I also have the bee stings in my limbs, ribs, burning thigh, calf, ankl cramps, buzzing feet, vibrating, rumbling sometimes heavy extremeties, etc but those come and go and my head symptoms remain constant.
I feel like this CIPD is secondary to something else b/c it started with a lot of autonomic nervous system dysfunction, partial autonomic seizures, headaches, etc. However, 2 lumbar punctures, 5 brain MRIs, 6 CT scans, 4 EMGs and 1 PET/CT later looking for cancer, 10 neurologists, rheumatologists and every other speciality under the sun and we have no further answers. I do have some autoimmune markers, and a history of high anticardiolipin antibodies (now fallen to low), but other than that not too much. I have Lyme exposure for sure in serum, but it was underwhelming when they tested my spinal fluid. So Im left with nonspecific CNS inflammation as my diagnosis. We are going to try a month of IV antibiotics just to put the possible Lyme issue to rest. I also ALWAYS have active epstein barr virus (had a horrible case of mono as a teen that ruined me for good I tell you) and has never left my blood – I always have a positive IgM antibodies.
Anyway, Im so worried they are missing something b.c my stories don’t sound too much like a lot of yours. My dr., who comes very well respected in NYC as a leader in neuropathy, thinks I have a chronic dysimmune syndrome since I had mild “flare” of very similar issues 15 years ago that resolved.
Anyone with mainly sensory CIDP or cranial nerve issues or atypical stories? Anyone with secondary CIDP or who feels that there is something else going on? I just finished my first round of IVIG 5x in one week and honestly I feel a little less fatigued by my head still feels as loopy/dizzy/foggy/pressure filled and facial pain as painful as ever. Im feeling discouraged and again questioning whats underlying this and why its devastating my face. Anyway, if anyone has anything they can relate to, I would love to hear from you…. L
August 1, 2016 at 10:58 pm #111688
CIDP is where the autoimmune system remembers how to make antibodies that attack “self”. The condition can lay dormant for years before being triggered by some virus like Shingles or a flu shot. When triggered, our systems can produce antibodies that go on the attack to remove invading organisms from our body. In doing so, they can attack parts of the body itself, usually focusing on soft nerve fibers such as Myelin. This causes weakness and loss of muscle control, burning and shaky muscles.
Here is a summary of the types of cells involved:
• B lymphocytes (B cells) are antibody-producing cells that are essential for acquired, antigen-specific immune responses. Fully mature B-cells are called plasma cells that produce antibodies, immune proteins that target and destroy bacteria, viruses and other “non-self” foreign antigens.
• T lymphocytes (T cells): Some T cells help the body distinguish between “self” and “non-self” antigens. Others initiate and control the extent of an immune response, boosting it as needed and then slowing it as the condition resolves. Other types of T cells directly attack and neutralize virus-infected or cancerous cells.
• Natural killer cells (NK cells) directly attack and kill abnormal cells such as cancer cells or those infected with a virus.
IVIg stops your autoimmune system from making more bad antibodies, but does not remove the bad antibodies already released into your system, these can continue to do damage, especially the ones that have travelled deep within your system. Plasma Exchange (PE) removes the bad antibodies but does not stop your body from producing more. I think, depending on the severity of individual cases, that treatment should consist of 3 days of PE followed by 5 days of IVIg (or SCIg).
One of the best long-term treatments for chronic PN disorders is an immunosuppressant drug. These drugs help suppress the autoimmune system from producing bad antibodies over time. These are strong drugs and may have side affects for some. Prednisone, CellCept, and Rituximab are some of the more popular drugs being used. However, when a CIDP attack reoccurs, IVIg or Plasma Exchange is usually given to stop the initial severity of the attack.
It sounds like the bad antibodies are still very active inside you. That could account for the numerous symptoms you have described. I experienced all that stuff when my disease was still very active. I had a combination of GBS/CIDP/MFS. The MFS piece seemed to take control of my head; the GBS piece had its way with my extremities. The symptoms you describe bring back awful memories.
For me, IVIg did nothing. I had it for several weeks and my symptoms continued to worsen. It wasn’t until I started PE that I started to return to a more normal state. The symptoms began to diminish following PE. If you haven’t been treated with PE perhaps that is worth discussing with your neurologist… right away!
August 8, 2016 at 12:29 am #111706
Hi this is my first time in a forum – hopefully it may answer a few questions for me too. I was diagnosed with atypical CIDP about 6 weeks ago and had the initial 5 day IVIg treatment 5 weeks ago and my second one only last Wednesday. I haven’t noticed any great improvements yet which is a bit disappointing – maybe slightly less breathless and more energetic but that may be all my yoga sessions! The thing I am most concerned about is the v recent development of a numb face and throbbing eye socket when I have heart palpitations at night. All new symptoms but am having tests done for the cardiac issues. Any advice/opinions anyone ???
August 3, 2016 at 7:16 pm #111697Linda AlexanderMember
Jim! Thank you so much for responding. I now understand the difference between IVIG and plamsap. My dr. went through so much fighting my insurance company to get me this IVIG and now is fighting to get me a PICC line of antibiotics for Lyme. I feel like he is just like give this a few months before he will switch course. I feel so out there with all these cranial issues. Since its an autoimmune attack I suppose its possible that it just decided to do a number on my face!
August 7, 2016 at 5:50 pm #111705
Well IM not the only one to experience damage to the autonomic nerve sys. I have always tried to get my Dr’ to see this.I have all the symptoms of MS except scares on the brain and cognitive slow down.
This was a 12 days visit to Kennestone. I had very good service, food and care.
This is the 10th time for CIDP. IVIG 3 times in the last 2 years. Seems like its about 50 thousand a pop so Ive got it covered. I suer am tired of this. Due to my pull through because of esophagus cancer I aspirate frequently. Phenomena alwaya followed. Sunday the 24 of July I aspirated 2:00 AM or so. I waited until my wife was awake to move to the hospital. You say how did I know it goes to Phynonia? Been there at least 5 times and it hurts and will wake me up.SO THE HOSPITAL SENT ME TO A ROOM . THEN AOUT 6: 00 PM got to a room and THEY started iv antibiotics. I responded to the med’s and then on Tuesday the 26th in the morning I aspirated again. yhis time it was followed by a stroke. I developed a Brain bleed (CT scanned) and a cardio fluctuation. It went from bad to worst. STAY OUT OF HOSPITALS. Each DR coming by Through his or her opinion without any overall care for my CIDP and pull through. They all nodded when I said CIDP but I knew they had never treated some one with all this and 75 years I think I should go to Vanderbilt, one of the Hospitals on the best for us list. I’m South of them and hesitate to leave my Neuro and regular Dr.They both have tried there best to treat the most with the most. I just fall outside the most Crowed
Time is money sos they Patch and dash, looK back and pat themselves on the back, Smile and dash to a person they can help,they have the best education this word has to offer and they are smart.But again time is money.
IU was thinking the other day only 8 in every 100,000 get GB and only 3 of those 100,000 get CIDP. How many of those 100,000 have CIDP more then 5 times. I think I’m on the tight wire as I get older. If anyone has better numbers then I have please correct me with a printed article that can be checked by a organization of Doctors or elsewhere.
In the Hospital I lost 5 pounds and need to snack more often and get back to 200. I am a junk food junky. “CANDY< SWEETS and sugar”. I”m looking for feedback if you don’t mind.
August 8, 2016 at 3:45 pm #111711
Too few neurologists have had hands-on experience with CIDP due to its rarity. As a result, most of us have to deal with “text book experts” that have to pull out their old med schoolbooks and look up the disease. Some may take the time to call associates, but chances are neither has first hand knowledge treating this disease.
Textbooks are going to recommend IVIg because it’s easy to administer, it has a successful history, is less intrusive than other treatments, and the doctor makes big bucks from it. They don’t make the big bucks from recommending the newer SCIg because some of us can administer that treatment to ourselves at much lower costs. Plasma Exchange (PE) requires a port be installed so large amounts of blood and plasma can be removed, filtered, and replaced in our bodies. The port has inconveniences like we can’t get it wet (no showering) and it’s prone to infection if the bandage isn’t changed regularly. However, PE is one of the only treatments that can remove the anti-bodies that are attacking us!
I am still paralyzed today because the textbook expert neurologist that initially treated me told me PE was too intrusive and recommended I go the IVIg route. That decision allowed the large amount of bad anti bodies still in my system to go on an uncontrolled rampage, rendering my condition unrepairable.
If and when my CIDP flares up again, I will demand 3 days of PE followed by 5 days of IVIg/SCIg.
August 8, 2016 at 7:47 pm #111712
Thanks Jim can you please tell me if PE is good for autonomic symptoms too? Excuse my ignorance but I am so new to all this that I haven’t got my head around the finer details yet )-: My neurologist wasn’t v optimistic about what I could expect in the way of improvements – seemed to suggest that the IVIg might slow down the progression of disease but that my nerve damage was too extensive to reverse any damage. Although my test results strongly suggest that I have had CIDP for a very long time (20 years plus) the cardiac issues and numb face etc are very new – maybe 2-3 months but escalating quickly. More advice please about my next steps would be v much appreciated.
August 8, 2016 at 9:48 pm #111713
gressier, I had AFib because of CIDP and had breathing problems also. My heart would skip beats and flutter; I couldn’t take a deep breath or blow my nose. I had to go on blood thinners for the AFib and have daily-medicated breathing exercises for over a year.
My autonomous systems were in perfect shape before CIDP struck (I was a semi-professional Tennis player and quite athletic). About a year and 80+ PE treatments latter, I was off blood thinners and the AFib abated. This was not the result of IVIg because I had stopped those treatments long before the AFib started up. Most people who have heriditary AFib (not from CIDP) don’t recover without on-going blood thinning meds. I had PE while taking blood thinners and when I stopped taking thinners after a year or so, my AFib was no more. My healing could have been due to many things, I think it was the PE.
Some nerve damage can be repaired. Myelin can grow back at the rate of 1 millimeter a day, which is only 0.0032808 ft, this is agonizingly slow but there has been little that can be done to speed up the process, except for the very expensive and experimental stem cell transplant treatment (HSCT). Axonal damage is another thing and you can read about it here:
August 8, 2016 at 11:55 pm #111714
Thanks Jim can you please clarify the time sequence of your treatments for me please. I’m feeling a little rattled today with my facial pain and palpitations … and am not concentrating v well. You mentioned that the delay in getting onto PE cause permanent problems? I sent a msg to my neurologist last night asking about his decision to start me on IVIg instead of PE but haven’t had a response yet. I also made an appointment to see another highly recommended neuro in Melbourne but she doesn’t have anything available until next February!! Not wanting to waste more precious time than I have to – I just found a neurologist in Sydney who supposedly specialises in this area also and made an appointment for next Tuesday. Hopefully by then I will know more from my cardiologist re. my unconfirmed AFib etc. I feel a bit vulnerable living in a part of Australia that doesn’t have these specialists and am really scared of delaying the process any further. My current cardio seems to think that there isn’t any urgency and has said before that I have had disease for so long that a little extra time won’t make much difference – but I guess I have more to lose than he does. Also, these new symptoms are alarming enough for me to go to the Emergency Department twice in the last fortnight so obviously are very concerning to me.
August 8, 2016 at 11:58 pm #111715
Sorry I ought to have said that it was my current neurologist who believes that I need’t panic not the cardio.
August 9, 2016 at 12:54 am #111716
I got the disease in October 2008 and started on IVIg. It was late December before I started PE and noticed definite improvements on day 3 of PE, mostly in my face! They didn’t discover the AFib until Jan/Feb during a routine EKG visit. I was rushed to the ER where I spent about 10 days in the Cardio ward. I had PE while there too. They had to do elctro-shock to get my heart rhythm out of the dumps… that was a production number lol.
AFib in and of itself isn’t as bad as it may sound. It is quickly controlled with Coumadin/Warfarin or like drugs. Since its a blood balancing act, you would get your blood tested regularly until they get your dosage right… if that’s what you have.
August 9, 2016 at 1:30 am #111717
Gosh know the feeling only too well after having a very large benign mediastinal mass removed in December and this was followed by a massive chest bleed the following day – all before the CIDP diagnosis. Can’t help thinking that there might be a link though … I do know it is pointless but really regret not linking all my dots years ago i.e. the trigenminal neuralgia and thyroid issues. Thanks for the reassurance with the AFib as I am at that stage of thinking what next???
September 1, 2016 at 5:49 am #111752joegalanjrParticipant
Hello I am a 44 year old male who was diagnosed with CIDP in Feb. Prior to becoming diagnosed I worked in the pest control industry and unfortunately did not have medical benefits. I have had 3 treatments of ivig and taking 100mg of prednisone daily. The county helped pay for my ivig but my neuroligist has told me that I need to apply for medicaid so that I can start physical therapy. I applied for disability back in early march and have yet to hear anything and was wondering if anyone else had issues with receiving disability or Medicaid.
September 20, 2016 at 11:11 pm #111775
Sorry your having troubler with CNS. I’m in my 36 year of this stuff and each year a new CNS aliment comes my way. Ive had IVIG 18 times in the last 18 months. Last week I started Prednisone again. Tomorrow I start IVIG again. This past week my legs were so weak that I could not rise from the ground. “Ground you say?” Yes if the mail box is down do I wait until It can be fixed by someone else? Nope no me. I had to sit on the ground at street level bore 4 holes and put a piece of Unistrute from the post to the arm. 4 holes with a 3/8 VS plugin drill, 4 lag bolts turned in with the drill. Whats work of that? But I could not get up from the ground. I tried every my to get my arms involved to get me up but finally i opened the door, put my hands in through where the window was and lifted 200+ up to sit in the truck.Last night I fell 3 times my legs just collapsed. First time I hit a fixture and have a nasty bruise on my forehead. Yet next time I’ll fix it myself again
1984 t0 2016 seems like Id learn something. This stuff will not get me down.I will no longer run but i’ll ride my bike for 1/2 hour at level 7 within a half hour. My wife keeps telling our preacher I’m sick keep me on the prayer list. I say Im not sick just have a problem or 2 at 75 lets celebrate life, seek prayers of our own and if others can ok.
September 25, 2016 at 2:32 am #111788
Hi, I’m feeling confused and anxious and need to touch base with someone who may be able to give me more advice from a patient’s viewpoint. I am struggling to find a neurologist who will accept that my new alarming cardio/ swinging blood pressure/vertigo symptoms may be related to my CIDP. I saw the second neurologist last week who brushed off all my questions about the possible connection and argued that it was ‘extremely unlikely’ and basically dismissed my worsening symptoms as being my cardiologist’s problem ? The cardiologist on the other hand (my second one) seems to be unfamiliar (and disinterested) in investigating the possible link too. In the meantime, I am wearing a event monitor until
next Wednesday but am unhappy with the care I am receiving but cannot afford to keep
trialling new specialists. I think the neurologists in particular are a little dismissive of my disease because I am ‘functional’ and unlike the majority of their other CIDP patients, can still walk without obvious signs of disability. I am getting to the point that I am becoming scared to go to sleep as most of my palpitations, low/high blood pressure, dizziness, sweats etc occur when I am laying down. Stress may be a factor but I believe it is a product and not the cause. Despite a v healthy lifestyle and not fitting into any of the 6 main risk categories for heart disease, I have recently been told that I have blockage of one of my carotid arteries and also between 25-50% coronary artery blockage. I am only 58 and exercise regularly. I’m sure my autonomic system is being affected but can’t seem to convince anyone else.
September 25, 2016 at 4:55 pm #111790
gressier, you may wish to use a GBS-CIDP Foundation liaison to help you locate a good specialist near you. If you don’t find coverage for your area in the following listing, please post back with your location and we will try to give you some referrals:
October 2, 2016 at 9:01 pm #111800MarkEnsParticipant
As a fellow CIDP sufferer, I had very minor face cramping and occasional difficulty with my eyes and slurring of my speech. The symptoms were always mild, so I never made much of a fuss about them. I did occasionally mention them to my neurologist, who would brush them off. I have a great deal of respect for him, so I took his “brush-off” to mean that they indeed unusual symptoms. I am confident that if they were more of a problem, he would have take them more seriously.
There are 13 cranial nerves. The terminal, olfactory, and optic nerves are considered part of the central nervous system. The other ten are considered peripheral nerves. So, while unusual (even in an unusual disease), CIDP can affect them as well. Indeed, several years ago there was a young girl with CIDP whose first sign of relapse was problems with controlling one of her eyes.
Of course, your symptoms could also have a CNS cause, just as MS patients have peripheral pain, even though there is nothing wrong with the peripheral nerves. Unfortunately, there is no good way to test these nerves. Think about trying to do an NCV test on your head. Uhh; it is bad enough on the arms and legs. A biopsy is pretty much out too. That leaves just symptom response to treatment. You might need to keep a diary of symptoms and treatments. Be objective in the symptom report, because the treatments may not work right away.
Godspeed in getting a treatment that works.
November 8, 2017 at 8:08 am #113508Collins22Participant
Cranial nerve involvement as well. Botox injections saved me. You might look into it.
November 9, 2017 at 4:02 pm #113513
Well Ive just had my 11th IVIG (Providgen) and am not that much better. I’m on a 6 week interval now. I have alway been very very active person. At 75 I exercise 4 times a week. My idea of exercise is to work each exercise until I can’t do another repetition of it. I first ride an incumbent bike for 30 minuets of an hour with resistance. When I stop i’m breathing hard. Not through my mouth but heavily. I also break a light sweat on my brow.Light machine exercises for another hour. Thats 3 times a week and light chair exercises the other days. I’m still walking with a cane and having most of my symptoms remaining. More later fellow vets.
July 24, 2019 at 1:02 pm #116484EileenParticipant
Strongly agree with August 8th post by Jim –
LA. Copious Neurologist only treat disease by textbook which in my case was damaging. Unfortunately their is a lack of Neurologists and in my case I was told first available appointment was 1 year and 2 months.
Highly recommended that before committing to a Neurologist you ask how many patients they have treated or do with CIDP. Does not stop there. Even I’d the Neurologist treats CIDP EACH HAS THEIR OWN BELIEFS AND TREATMENT PLAN. Many Neurologist ( or in one of my experiences, (the Doctor / Chief of Staff of the hospital) did not belief in Ivig, or plasma treatments , therefore I was on many different Rx , ( at the same time ) that did nothing for me . During that time my health declined as self continued to attack myelin and lost most muscle control. Point being every person different , it is a Must to have a Doctor who listens and communicates with you and understands the ever changing symptoms .
I by no means intend to attack the profession of Neurologist’s . They are learning as we are learning, which reflects in the increase of people diagnosed with rare autoimmune diseases.
July 24, 2019 at 7:22 pm #116485ChicagoCIDPParticipant
You are absolutely right! The doctors have to listen to what you are telling them because that’s all they can off of. My hospital has a portal and I choose to message my doc every couple weeks with an update on all that I am feeling. I get a response back within a business day and we alter med dosages if need be without having to schedule a visit.
They are in fact learning also as this isn’t the most figured out disorders at this point in time. The key is to communicate often and thoroughly. There is no one-trick to get fixed.
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