Should I seek second opinion/ CIDP


I want to start off, back in Janurary of 2013 I was a very healthy and vibrant 35 year old young man, who decided to make a career move and obtain my CDLs and become a Truck driver seeing that in the small, quiet, country town me and my family lived in did not have very many decent paying places of employment to offer anyone with a stable and steady income. In April of that year, after graduating the required College , as a very attentive, and “catching on” quickly and very soon,was heading west as part of a team. It was a challenge and you learned every minute along the way. I loved it. It was me, the open highway, I don’t know, sort of like a loner, like to drive at night. My loving, beautiful wife, stressed it, but she steadfastly supported me every mile.
In March of 2015 things suddenly took a drastic turn, when driving through Texas one night, as cars passed me, the tail lights “trailed” and I had a very unpleasant taste in my mouth and began to feel very awkward and dizzy and I immediately pulled the truck to the shoulder. When I “came to” I was slumped over the steering wheel and had drooled rather heavily and was rather “froggy minded” and at that time, I vaguely remembered, thanks to my team drive whom I woke after the incident, I let drive on and I went to bed. When I awoke, I of course called my PCP and spoke with the Nurse and made an appointment as soon as we were scheduled to return, which was within 14 hours. My PCP said it was Migranes w/Auras and placed me on some trial medicines and told me to try those for a week and she would release me to go back to work afterwards. I was cleared but I had another one quite the same the following week and when I contacted my PCP, she immediately scheduled me an appointment with a Neurolgist. After his testing, he sent for an MRI and the MRI showed some white lesions and he said I had White Matter Signal Changes… OKAY?? He sends us home with that news…The next day, I have a full blown seizure, we contact his office, the diagnosis is Epilepsy!
WHAT!!! Medicine… Kepra…Cannot take it! I cannot remember why! We are beginning to wonder if this Dr is really knowing what he is talking about just because of certain mannerisms, office staff handling of medical reports and other issues, so we find our own Neurologist at a prominant Hospital, who’s Neurology Department is very well educated, well staffed, and renowned! Scheduled appointment is three months out and in the meantime, I am on the new prescibed medicine from the original DR, I cannot remember the name, and I am still having seizures, at an average about once a week. Now mind you, in the state I live in, once stated in a Medical record that a CDL holder has Epilepsy, their Medical Card which is tied to their CDL, is pulled, so I was not and DID not drive, and would not even if would have been allowed to do so. The new Neurologist orders blood work, urine specimen, and of course, goes over the MRI and reverses the call of White Matter Signal Changes and changes my Medicine to Topimax and Lamictol and after three months of this regiment and with the seizures still coming, we agree to a EMU diagnostic testing with a 5 day inpatient which comes up inconclusive, no seizure. The DR concludes the seizures are now Psychogenic Non-Epileptic Seizure and I am referred to a Psychologist which I am put on more medicine, Buspirone and Mirtazapine.
Around September of 2015, seizures have quited, but I am beginning to have severe burning and tingling in my feet and in my hands. Dr immediately puts me on Gabapentin. By March 2016 it is so bad they order the Nerve Conduction test and apparently it is not too good and they say I have Peripheral Neuropathy. It is now, August of 2016 and I am having issues with my left leg and left arm. One or the other will just go weak, on their own, at any given time, limp! If it’s my leg, I fall, my arm, I drop whatever I am holding. My arm will curl up to my side, my leg, as I try to get where I need to be, it feels like I am walking on my ankle. These “spells” last from 10 seconds, to 10 minutes. Middle of my spine burns, base of my neck will burn, sometimes it feels like I am being suffocated, sometimes, it feels like my heart is going to just “pop, pop right out of my chest,” my feet, burning! Since all this mess, I have developed an issue to where I have major stuttering spells which are embarrassing and when they come along, it is as if I am being shocked in my jaw! What is causing that? SOmetimes, it feels like I am having kidney stones, lower back, just sore to the touch. These are some of the symptoms! I mention them to Neurologist seeing that I see him every three months and in October of 2016, with another Nerve Conduction and Neruomuscular test done, the results show the Neuropathy has become worse and I am reffered to a Neruomuslar Dr which she believes I have HNPP or CIDP and May 2017 a LP is ordered and it shows a High Protein level, and the diagnosis is CIDP.
So here we are after 5 treatments of IVIG and we are wondering…are we being used as guinea pigs…Are we just being passed down the line? Because we have great insurance? Because they don’t have a clue what is going on? We want to know what is going on with the brain? Does CIDP cause brain malfunctions that cause stuttering issues, all the symptoms I am experiencing? I have not had a seizure since December of 2016, thank God those seem to be under control! I know it has only been a week since the IVIG, but now, I feel as if I am walking on bone, feet still burn, actually burn worse. Any advice would be helpful.

Depserate for answers!!!

CIDP is relatively rare so I think our doctors do the best they can. We all seen to be a bit different. It is frustrating. You’re lucky you have good insurance and can have the IVIG . it seems to be the best course of treatment. I know it’s hard but try to stay occupied…seek out methods to control your pain by putting your focus elsewhere. I use music, humor, thi chi, gardening, and I feel lucky I still manage to work. It’s very difficult most days but I think it keeps me from giving in to dispair. Remember and focus on those who love and support you and give those things back. Good luck. Hang in there.

Mr. Miller - Other than the numbness and tngling in your legs and emg results, Your symptoms don’t align with my cidp symptoms or with any other I have heard of on this forum. You certainly may have cidp but it sounds like you may have some other condition in addition. For that reason, I think a second opinion could be in order. Do the docs still think you have epilepsy? Do they think the seizures are related in some way to the cidp?

Thank you for the reply. As far as Epilepsy…non-epileptic seizures!
Generally caused by anxiety or panic attacks. They do not think they are
related to the CIDP. I find the whole CIDP diagnosis rather strange, but
that is my take due to the seizures and the rest of the symptoms and think
another MRI to see if the White Matter Lesions have changed though. CIDP
does attack the Myelin but the White Matter Signal Changes also coincides
with the Myelin as well.

Well, stick with the ivig for now. That seems to be effective to varying degrees for many, but not all, cidp patients. It’s a blood product, not a medication, and most people, including myself, tolerate it very well. I wish you the best as you deal with this debilitating affliction.

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Mr. Miller, do some research on the hospitals in your geographical area to find the best places that treat GBS, CIDP, and other neurological problems. GET A 2ND OR EVEN A 3RD OPINION. It is your right to do this and you may be surprised by what other professionals know about your problem(s). If your insurance is good enough, I would suggest the Mayo Clinic in Minnesota for an evaluation. They are terrifically knowledgeable about all body conditions and can recommend other institutions where you might get other opinions. I have just said a prayer for you…I believe in the power of prayer to help sustain us as we go through this earthly life. P.S. I am a quadriplegic caused by GBS and crumbling bones due to the drug prednisone. Each day I laugh, giggle, cry, moan, and pray. It helps me deal with my conditions and I am not ashamed to say so…

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Yes Jim find a CIDP SPECIALIST IF YOU WANT TO TALK CALL ME (info removed for privacy)
Some of you story is similar to mine
God Bless I pray for you now and the time ahead
Let me know I have talked with a lot of people in the past 1.5 years with what we are going through

We have considered Mayo Clinic and have truly enticed the idea of a second or third opinion as well. I hate to hear about your condition. That is a humbling situation and experience and your seemingly upbeat attitude is rather uplifting so thank you for that encouragement. Thank your for the prayers and I will send some up for you as well.

I finally found a good neurologist who believes I had the Miller Fisher variant of GBS but it took several tries before I found him. I think the Mayo Clinic sounds great if you can get in with them. I tried a different well known clinic and was completely disappointed with my doctor as he was arrogant and demeaning. I guess that can happen anywhere and I was so discouraged initially. But I decided to not give up and continue the search for my diagnosis and assistance with my condition. I think it’s important to stay positive and turn away from the negative when you encounter it and keep moving forward. Good luck to you!

Thank you! Can never have enough prayers!!!

Thanks to everyone for the responses and the prayers and thought and mostly
for the advice. It is a double edged when I read about other’s conditions
and see what you all are going through. I send my prayers and thoughts to
each one of you as well. I will be seeking a second opinion. When one
get their medical records, can they get the correspondence that is put into
the computers that is put into the computers when you come in for every
visit? And what about the correspondence between two or three Doctors in
the same Hospital? Does anyone happen to know the answer to that question?
I do appreciate you all.



Are you a Doctor? From what country?