So... I reach CIDP remission after one very long year of ups and downs with IvIG, then I was hit by that metaphorical dump truck, blindsided by fecal impaction and orthostatic HYPOtension. Five days in the hospital. When I awoke in the hospital that first day, the first thing I noticed was new neropathies on all four limbs... these appeared overnight, so I am positive they were rapid demeyalization, not DM type 2 PN.
My most recent IvIg, @ 120gr/2 weeks, did not cover all the familiar bases, especially these new neuropathies and the very old ones
My question is: has anyone experienced a 2nd severe trauma that might have changed the parameters of the 1st CIDP diagnoses? Increased the disease>
In other words- say a second flu shot, in a CIDP person, then creates a larger scope of CIDP manifestations built on the original CIDP disease?
Gee, I asked the same question twice... and that is the point.
Not yet, as I am still adjusting to remission in the first place. But now you have kind of answered one of my questions and I am sorry it happened this way to you. But when and if the remission end will it be a slow process or quick?
I'm off to the Mayo Clinic at the end of September, and they want to try to figure out why I am still falling and have double vision along with off and on blurry vision while in remission. I still have issues with autonomic nervous systems as well which could account for the vision.
I hope not to have a second severe trauma, but I have fallen 56 times this year, so I keep praying for the remission to last just a little bit longer.
I made great improvement and my neuro and I hoped it was remission but if it was it lasted less than 6wks and bk to square one and bk on ivig only this time I now have aches all over my body and a stiff neck . Good luck and try to stay positive …it’s all we can do really
Are you saying you did have a flu shot ?
My docs suggested I stay away from those.
I was not aware demyelination was that quick.
Have you been on prednisone? That plus cellcept are my FRIENDS.
My reading on neuropathies indicates that a progression of remissions and relapsing is not uncommon even when some other significant event is not involved.
You should however, be aware that some of the symptoms of orthostatic hypotension mimic peripheral neuropathies, particularly paresthesia. So suddenly waking up thinking the return of neuropathy is understandable. Unless you have neuropathy return confirmed, and particularly if IVIg suddenly does not benefit, I would think you are dealing with a completely different new problem that will not respond to IVIg.
I’m sorry, but, what is your description of “remission”". My understanding of “cure” is to go 5 years with no IVIG: 11% of patients are cured after 5 years of no treatment…46% of us are still trying for the 5 years…I have continued my every four week of IVIG and medication to reach a level of being constant in my daily living. This has been two years now. Soon I hope to extend that to 5 weeks, etc. I would like to hear a definition of “remission” as I have not heard that term applied to CIDP. Please advise as soon as you can.
Well since I can't tolerate IVIG due to clotting issues I have only had it once in June of 2010. I have not tried plasma exchange either, as of yet, but they are talking about that for my MGUS. I will know more once I see the Doc's up at the Mayo Clinic.
I still have the pins and needles in all my extremities, but on EMG it does not show up in the right arm now. The Doc's explained that the reason for that is those nerves causing the right arm issues are to fine for the EMG to read. That and my latest spinal tap was almost normal. So again remission for now.
New Dx: MGUS with neuropathy, and off to the Mayo Clinic.
Well, lost that reply! I have been reading about MGUS this AM. Never heard of that one! The falls are a serious concern to me…broken limbs, head injury …hips, etc. are you using your wheelchair or walker? I had fallen several times before a confirmed diagnosis of CIDP was given, i went around the rosies before the actual final diagnosis was obtained. If your MGUS turns into Lymphoma or Multiple Mylenoma , You might be more pleased with the original CIDP…i was actually confined to a wheelchair March of 2011 with both legs paralyzed for several months, the physical rehab…then IVIG…and then cane and now walking unassisted…walking carefully. Even climbing many steps …up and down stairs no more than 6 times in one day. Fatigue and stress are my two main foes at this time. It took almost one year to come up with correct diagnosis. I found that the CIDP had to actually get WORSE and bottom ouf, before any treatments or physical therapy helped at all. In other words even my therapist even said they were accustomed to patients getting better each week, but i seemed to worsen. Until about six months out when i began to finally improve. You just may be on your descent portion of your disease. With the addition of new symptoms. My Neurologist, Dr Christopher LaGanke in Cullman, AL for Gods sake has been my hero. My complete trust in his treatment plan and with him actually listening to me, i feel has hep,ed me go from wheelchair to walking in a short oeriod of time. I have not fallen again in over two years but did use the cane for an extended perio of time only for balance…my balance should be the lAst function to return, i finally have all reflexes returned (just two months ago)…i hate to say this, but you sound more like MS than anything else and i am not a doctor and not even a nurse.
I am so pleased that you have an appointment at Mayo…that i also considered before i found Dr, LaGanke in Cullman, AL for Gods sake. This was after Decatur, Huntsville, Birmingham and then Cullman for Gods sake. I was referred and not Neuro shopping. Go to Mayo and you will get answers and treatment plan! Yeah!
MGUS or monoclonal gammopathy of undetermined significance is one of those strange things. Looks deep enough in the literature and you will find that perfectly "normal" people often have MGUS and it means absolutely nothing. So - if your tests turn up the markers AND you have a neuropathy it is likely the docs will jump onto the two being related with the MGUS markers being a sign of something quite nasty happening. That happened to me so the neuro was quite convinced that the actual obvious cause was not and the other was IT! Blinkered by science! However - for me, ongoing tests by my haematologist proved that the connection was highly unlikely and I just have this MGUS - like lots of healthy people. I don't have that neuro, or the next one for other reasons but at least I have a haematologist who does the hard yards. DON'T ignore MGUS markers as they can indicate a number of nasty things developing. Early warning is good in those cases and it might take 12 months of routine tests to see any trend to a warning or don't worry.
If you have not figured it out yet - do your research (and get frustrated) in Google Scholar.
I use the cane around the house, and the wheelchair when I leave the house to go shopping. It is hard to move around in the house in the chair and need some modifications made in kitchen and bathroom. MGUS Gets checked every 12 months since 2009 when it was found, and now I have a small aneurysm in the abdomen that needs to be watch regularly that was found this year, along with a small nodule in the right lung also found this year. (same ct scan)
I Try to do research on everything that I find new, so that I can try and be informed. But sometimes it can feel so overwhelming.
It feels like for one step forward I go 3 steps backwards.
So glad you posted this. I was wondering the same. I believe that my CIDP was caused by a Tdap shot I got back in early April after being exposed for 30 minutes to a patient with Pertussis aka whooping cough. Needless to say, I had to get the Tdap per CDC guidelines (even though mine was current) and a Zpak. Now with the flu season upon us, my employer is going to want me to get the mandatory flu shot. It's my understanding that IVIG renders vaccinations ineffective and I fear another vaccination of any type might send me over the edge. It seems like the IVIG treatments are not as effective as the first couple of ones were. I think I've had 5 total now and that the effect doesn't last as long. My neurologist, who I have seen for about 9 years now, thinks that after 6 months of IVIG treatments that I should not need them anymore, but the plan is to do them until early December and then stop them and 'wait and see'. Yesterday I carried a box of supplies that weighed about 20# for about 15 yards and it felt like my arms might fall off and today they are very weak. I can type, but that is about it. It was a struggle to get my hair and teeth brushed this morning and my muscles burn.
Was an increase in IgG considered? IgG is mostly benign and the guidelines for it, I think, are probably based around cost. I will be increasing my total IgG infusion to 280 grams/mo starting this week. My insurance provider is probably dancing a war dance over this at this very moment.
Sunshine said:
So glad you posted this. I was wondering the same. I believe that my CIDP was caused by a Tdap shot I got back in early April after being exposed for 30 minutes to a patient with Pertussis aka whooping cough. Needless to say, I had to get the Tdap per CDC guidelines (even though mine was current) and a Zpak. Now with the flu season upon us, my employer is going to want me to get the mandatory flu shot. It's my understanding that IVIG renders vaccinations ineffective and I fear another vaccination of any type might send me over the edge. It seems like the IVIG treatments are not as effective as the first couple of ones were. I think I've had 5 total now and that the effect doesn't last as long. My neurologist, who I have seen for about 9 years now, thinks that after 6 months of IVIG treatments that I should not need them anymore, but the plan is to do them until early December and then stop them and 'wait and see'. Yesterday I carried a box of supplies that weighed about 20# for about 15 yards and it felt like my arms might fall off and today they are very weak. I can type, but that is about it. It was a struggle to get my hair and teeth brushed this morning and my muscles burn.
Did the research. I had IgM markers, which can go to Waldenstrom macroglobulinemia. However, after two years of low and mostly normal white blood cell counts, I have cleared a benchmark for this condition.
Diagnoses of CIDP may require a LP, and MGUS may be a result. At first it is a shock to learn that these "nasty" cancers are fiddling about in the bone marrow.
I've read that a high prevalence of CIDPers have MGUS. It makes me wonder if the trauma involved in breaking bones instigated one or more of my conditions. I've broken too many bones and my humeral soup, wherein my nerves float and still fume, never seems to forget.
Michael C Stark said:
MGUS or monoclonal gammopathy of undetermined significance is one of those strange things. Looks deep enough in the literature and you will find that perfectly "normal" people often have MGUS and it means absolutely nothing. So - if your tests turn up the markers AND you have a neuropathy it is likely the docs will jump onto the two being related with the MGUS markers being a sign of something quite nasty happening. That happened to me so the neuro was quite convinced that the actual obvious cause was not and the other was IT! Blinkered by science! However - for me, ongoing tests by my haematologist proved that the connection was highly unlikely and I just have this MGUS - like lots of healthy people. I don't have that neuro, or the next one for other reasons but at least I have a haematologist who does the hard yards. DON'T ignore MGUS markers as they can indicate a number of nasty things developing. Early warning is good in those cases and it might take 12 months of routine tests to see any trend to a warning or don't worry.
If you have not figured it out yet - do your research (and get frustrated) in Google Scholar.
If I am not in remission (a state of remyelinization where axons can carry a full voltage-potential to a muscle or muscles) then I am in relapse (no electrical signal from the lower neurons).
Which begs the question, how long does it take for your IvIg infusion session to remeylinate your axons, i.e. the CIDP symptoms lessen or go away completely? I just reached an almost positive linear progression between infusion, so I have steady remission... yet, I got hit by a trauma truck and things went South. Yes, it may be a new neuro condition... egad!
Toni King Roberts said:
I'm sorry, but, what is your description of "remission"". My understanding of "cure" is to go 5 years with no IVIG: 11% of patients are cured after 5 years of no treatment.....46% of us are still trying for the 5 years....I have continued my every four week of IVIG and medication to reach a level of being constant in my daily living. This has been two years now. Soon I hope to extend that to 5 weeks, etc. I would like to hear a definition of "remission" as I have not heard that term applied to CIDP. Please advise as soon as you can.
Sorry about your troubles. As a nurse I know how frustrating it is to deal with insurance companies. I get my IVIG for free because I get treated at the hospital I work for so they write off the amount that my insurance doesn't cover as an employee benefit. I feel like I am in a sink or swim situation right now. Each IVIG isn't as effective as the one before and doesn't last as long. I'm a MSer/CIDPer. Yesterday while at the Renaissance Festival where it was 97 degrees, I had an episode of autonomic nervous system dysfunction which left me colorblind in my left eye, my legs like jelly, tachycardic, and I couldn't sweat despite being well hydrated and I felt at the time like my IQ dropped 30 points. Once the medics got me iced down and cooled off a bit, I was ok, but felt pretty washed out. I'm thinking about going to KU Med to see if they can offer me any hope with all this. I feel like it's 1 step forward and 2 steps back right now and feel most certain that if I get another flu shot, it will be career ending.
estaban said:
Was an increase in IgG considered? IgG is mostly benign and the guidelines for it, I think, are probably based around cost. I will be increasing my total IgG infusion to 280 grams/mo starting this week. My insurance provider is probably dancing a war dance over this at this very moment.
Sunshine said:
So glad you posted this. I was wondering the same. I believe that my CIDP was caused by a Tdap shot I got back in early April after being exposed for 30 minutes to a patient with Pertussis aka whooping cough. Needless to say, I had to get the Tdap per CDC guidelines (even though mine was current) and a Zpak. Now with the flu season upon us, my employer is going to want me to get the mandatory flu shot. It's my understanding that IVIG renders vaccinations ineffective and I fear another vaccination of any type might send me over the edge. It seems like the IVIG treatments are not as effective as the first couple of ones were. I think I've had 5 total now and that the effect doesn't last as long. My neurologist, who I have seen for about 9 years now, thinks that after 6 months of IVIG treatments that I should not need them anymore, but the plan is to do them until early December and then stop them and 'wait and see'. Yesterday I carried a box of supplies that weighed about 20# for about 15 yards and it felt like my arms might fall off and today they are very weak. I can type, but that is about it. It was a struggle to get my hair and teeth brushed this morning and my muscles burn.
Well Sunshine, good luck at KU, they treated me excellently there. Even though they were not able to figure out the reason for the falls and double vision, so they have referred me to the Mayo Clinic. I leave for MN in 3 weeks which will be a new adventure, and a 700 mile drive due north. I will get to see 2 new states:)
Sunshine…I had IVIG. For 3 Days in row for first 6 months then tapered to one a month for then. Just stopped the three day thing after 6 months…not whole thing. I have one of, if not the best Neurologist in United States and he is from tiny town of Cullman, Al, for God’ s sake. Who would have thunk it? He is currently working with Drs all over world to get approval for a drug for MS that will change everything. It is currently used all over Europe, but can’t get FDA approval because the effects are so awesome , the control group knows immediately that they are control group and immediately want the drug…the difference is so great. I have found that most MS treatments or a combination thereof, are very effective on CIDP. I feel that CIDP is a 4th or 5th cousin of MS (and if in Tennessee, maybe closer). Sorry Esteban that so long…Toni
Dear bteeter. Where are you physically located? Dr LaGanke has presented this drug in conjunction with Doctors in Russia, Brussels, Mayo, and many other doctors from around the world. I have not heard that it has been FDA approved and honestly I don’t remember the name of it. Let me check my iPhone to see if I can find the photo of the information in the infusion room. Who is your wife’s neurologist?
