Haven’t been on here for a while but need some help. I have had CIDP since 1994 as a result of the pneumonia/NJ flu vaccine. I have been most fortunate in that most of the serious symptoms disappeared and I have been able to cope with what I have.
I have developed back and hip pain and was recommended to a physical therapist with a very fine reputation. Went yesterday and it didn’t take for him to find the problem which is a muscle. He worked on it for some time and then gave me a TENS
(Transcutaneous Electrical Nerve Stimulation} treatment for 15 minutes - it was not too strong. In any event, I awakened this morning and felt more tingling than I have in a very long time. My back/hip feel somewhat better already.
So - here is my question - should I not have any more TENS? I am very concerned about awakening nerves that have been fairly dormant for years.
Thanks so very much.
Hi. Glad to hear you are feeling a little better. I guess I am a little confused as to where you are feeling more tingling and or nerve irritation. I should tell you that I am physical therapist (over 20 years) and that TENS is not specifically contraindicated for peripheral neuropathy. It is contraindicated in an area if you have sensory dysfunction and cannot tell if the pain is getting worse. If you have increased tingling in your back/hip/buttocks it may not be from the TENs but a symptom of the muscle/tissue dysfunction, treatment (manual therapy) or exercise. I would definitely discuss with your PT and let them know what you are feeling. CIDP is not specifically taught in school and they may need to do some extra research. Also, TENS is used to block pain, but does not heal or fix the underlying issue. You may want to skip this part of the treatment if it is aggravating to the area. Good luck and I hope you continue on your healing journey.
Thanks so much for your reply. I have another appointment Wednesday and will address the situation with him. It was the morning after the TENS that I feel much stronger tingling and was concerned that it could be aggravating the CIDP issue.
I sent a copy of the above to my pt’s office and received a response in return. In part he said “What we used is also not a TENS system but an Interferential current which is a little different”. I went again this morning and it was determined NOT to use this system for my therapy - thanks to YOU
So I have discovered that the TENS I thought I got was Interferential current which supposedly is different. My tingling and pins and needles are so much more pronounced than its been in the past 25 years - I know I cannot undo what has been done but perhaps it will save someone else the problem that I now have. I always said that if my symptoms never got any worse than they were, that I would be so happy. Not any more…
Thanks for sharing your experience! It is so awesome to know in advance. I was diagnosed 12 months ago with acute CIDP. It took a year of searching for answers to my illness with 9 different specialists. Finally got a diagnosis CIDP. I had 6 months of IVIG when my arm vascular system started collapsing from all the needle sticks every month. I transitioned to Hizentra. Its the same IG medication, it just goes under the top skin levels versus into your veins. I have severe burning and loss of feeling in my legs and feet and moderate levels in my hands. I take 1200 mg of gabapentin to help deal with extreme pain and nerve destruction. They want to up the dose but i refuse it.
In 3 weeks i will have hand surgery and surgical removed of the bottom bone of my thumb which is at the wrist. I have acute arthritis in the bone with a bone spur the size of the bone, caused by profuse rubbing of the bones and loss of cartilage between the thumb bones. Procedure is called LRTI. Apparently it is a very painful surgery and will require extensive pain management for minimum of 3 to 6 months. I will have lots of therapy. My exact fear for recovery is what you discussed above, having the electrical stim and it worsening the CIDP and burning in my hands. So thanks very much for confirming that the electrical stim only worsens the CIDP and acute pain from the burning of the polyneuropathy. You’re the best! Anne
Am delighted that you found my post and hopefully the information will help you. Everyday I rue having that Interferential current - I almost want to bring suit against the therapist but am certain nothing will ever come of it. He was aware of my CIDP and said he researched it but I don’t know it anything is ever mentioned about this little procedure. In any event, I am 84 and upset with myself too because I should have thought it might “wake up” those sleeping myelin sheaths!
I will speak with my internist soon and perhaps he will increase the Gabapentin. I have not seen a neurologist recently because there is no one locally who is knowledgeable about CIDP and I think it is pointless to see someone unless they have some background in this field.
In any event, please keep us all posted on how you are doing and once again, am happy to have given you some useful information.
Terri, thanks for your post! Yes, upping the gabapentin will help alleviate the pain and symptoms, however, the meds have side effects and once you go to a higher dose, you really cannot lessen that dose for the rest of your life. Also, it takes a few weeks at a higher dose for it to be effective. That’s why i try not to up my dose. So, what i did was take 1 extra 100 mg pill per week or every 10 days to actually find the correct dose for me. Then you are not talking more gabapentin then needed.
As for a CIDP neurologist, where do you live? What you want to find is a nerve muscle neurologist. Thats what they call the division i am in at Yale. Yale has over 45 neurologists and many sub specialties for those 45 doctors. So find a nerve muscle neurologist. Ok. I drive 90 minutes for my appointments at Yale, however, its worth the trip despite my difficulty driving. Best regards, Anne
I am now taking 300 mg twice daily so I will see what the doctor suggests. I live in Boca Raton Florida and although there are many neurologists here, none are that knowledgeable about CIDP.
Terri
Hi Terri,
My mom used to live in Boynton Beach. I would visit every year for about 10 days. As for neurologists, I’ll do a search too, to see if i can find anyone that is nerve muscle neurologist. What is the best hospital in Florida? The best doctors are with the best hospitals.
Me, i take 1200 mg of gabapentin daily. I am 64 years old. I know my nerves have permanent damage because just about 4 to 6 weeks before i got into a neurologist and hot diagnosed, one morning i awoke and my left foot was full of blood covering most of the foot. My doctor said it was when my nerve actually burst from the CIDP. So, i may get better to some degree but never a complete restoration of the damage already done. I was diagnosed 13 months ago. My gabapentin dose slowly increased, unfortunately.l i just hope for remission. If you really have CIDP versus just polyneuropathy, you should be getting infusion treatments. Do you get any treatment of any sort or were you in remission? Also, i have acute bronchitis and have been in bed all week, still rather but getting better with antibiotics. So, maybe sometime next week i can search for you? Let me know about the best hospital in Florida. Its worth driving a little further or having a family member take you to a good doctor versus a so so doctor. From what i could see for my mom, there are lots of doctors in Florida, but not too many that are really good. Regards, Anne
So Anne – my symptoms started in 1994 immediately after I received a NJ swine flu and a pneumonia vaccine both on the same day – the beginning was numbness in my right leg
and then the knee would cave in frequently. It rapidly started in my other leg and I went to an internist here who did tests and sent me to a neurologist and then an infectious disease doctor. They finally “decided” I had CIDP – first thoughts were Lyme disease
because I came down here from NJ and there were deer on our property – and then they thought it was MS. I did have infusions way back in 1994 and had a shunt in my arm – went in every morning BUT then they said it was no longer necessary. Also had a spinal
tap done at the local hospital where they let me go almost immediately afterwards and I suffered for months with major problems following that big mistake – I should have remained there and prone for a few hours.
I went years later to a neurologist who I thought was tops in this field but he moved his practice and now probably is retired! All symptoms that I had left me after some
time and now I have numbness and tingling throughout my entire body.
So – I am not positive if I really have CIDP or polyneuropathy.
Hi Terri,
So you are from the tristate area. I am from CT obviously. Interesting scenario you described. Let me share with you my illness, when and how it started, and then ultimate diagnosis and how they diagnosis CIDP. The other interesting thing i would share is that CIDP is highly progressive, like MS, if left untreated. Within a year or so you would be in a wheelchair if you had CIDP or Guillain Barre Syndrome, “GBS”.
On December 7, of 2017 i received the pneumococcal 23 vaccination. I had animmediate acute allergic response within 12 to 15 hours. I went to an urgent visit location which is part of the Scarsdale Medical Group. I was treated for this which was heavy rash and profuse swelling all over my arms, torso, and back. Then within 3 weeks max, i could no longer feel my feet. The pain index was a level 10 out of 10. I went to 8 specialist before ending up in a neurologist office. So my profuse symptoms started immediately after the vaccine and within 3 weeks, New Years Eve. I know the days and timing exceeding well because my dad was again admitted to the hospital that day. I visited him every night after work. He passed away on January 6, 2018. Tomorrow will be 2 years… anyway, i clearly know the timing and symptoms. I first thought it was rheumatoid arthritis like my mom had. Doctor did over 40 blood tests which were all negative. From there i saw some of these doctors, infectious disease, 2 different orthopedists, podiatrists, etc, who finally recommended i see a neurologist. This was 10 months after the vaccine. Neurologist did exam, and i had no reflex action in my legs. From there, she ordered what is called a nerve muscle test which is electrical current jolts into all areas of feet and legs which only confirmed that there is extreme damage to my nerves in my feet and legs. From there, the neurologist does about 50 different blood tests to rule out other diseases. I was negative for any other diseases. My nerve muscle test was so bad, it could not be just polyneuropathy given its sudden onset. I was barely able to walk at that time which was then 11 months after the vaccination. Diagnosis was the CIDP. Upon asking how i got CIDP, she said it is usually brought on suddenly and triggered by an injection. That was when i connected the vaccination injection to my CIDP illness. I told her about that and confirmed i had not had any other shots or vaccinations for over 4 years, no flu shot or anything. This is a well known and highly respected neurologist with Columbia Presbyterian. I then read online about CIDP for months. The CIDP website confirms vaccination injurys occur with 2 distinct things. 1) Immediate allergic reaction within 12 to 24 hours. I have record of that from my urgent visit about 15 hours after my injection. 2) neuropathy symptoms to start within a 6 week timeframe. Mine started like 1 to 2 weeks later. So i met both timelines for vaccination injury and have have all the symptoms for CIDP, backed up with nerve muscle test and extensive blood work to show it is not MS or anything else. So, basically you must meet these test criteria to have firm diagnosis of CIDP. The only other way to diagnose it is through the spinal cord tap which you apparently had. If they stopped your infusion treatment after the tap, it is because the bloodwork and bone marrow was negative. The fact your symptoms slowly disappeared further confirm you probably did not have CIDP unless you had positive test results in the nerve muscle test. What you have or had, i dont know…I’m not a doctor. However, if you still have neuropathy symptoms and pain, you do need to find a good neurologist. Unfortunately, there is not much treatment today for just polyneuropathy if this is a symptom you still have. I know because i participate in a monthly group call with other people who suffer from polyneuropathy. I have learned a lot about these symptoms and treatments via the group calls. I only benefit from the call by learning about other people’s challenges and how they deal with it, not the treatments they actually try.
Call is people all over the US, its not international. You might benefit by joining the calls. They discuss symptoms people have and various treatments they try. It is only for people with polyneuropathy. I have an acute form of polyneuropathy. It behaves just like MS. it has to be treated or people will become wheelchair bound, then bedridden, and then people can die, all within a few years time, just like MS. Treatments people discuss and try are not for me because i get infusion treatments from a doctor’s order and cannot interfere with it in any way. The call focuses on various treatments that help alleviate pain and symptoms of polyneuropathy. It is not a sounding group call. I am happy to pass along your name and email address if you would like to join the group call. Just send it to me.
Also, if you need more gabapentin, you have to find a neurologist in Florida that can help you with some sort of diagnosis.
Any thoughts on your end about this and my story?
Best regards, Anne
Terri,
PS. If i wasn’t clear below, CIDP requires treatment or illness and symptoms only worsen. It is not curable. The objective with treatment is to bring remission to the attacking illness. It is a diagnosed treatment that medical insurance companies are required to cover as a confirmed treatment by the NIH or CDC, i forget which site has that. It generally takes a year to multiple years to achieve remission. And, only about 40 to 60% of those getting treatment achieve remission. I hope that gives you some guidance with regards to your own difficulty or illness.
Best, Annr
Anne: You have given me a lot to think about and I dug out some medical records from 1994-1995 (yes, I still have them but haven’t looked at them since then!). The diagnosis ranged from Lyme to MS to CIDP (one doctor said “mild” CIDP - is that possible?}. Incidentally, I had no reflexes but I have no recollection of whether I had the infusions before or after the spinal tap. And, as an aside and I don’t remember if I mentioned this prior, the nurses at the hospital allowed me to get up off the table shortly after the spinal tap which left me with horrendous problems for weeks.
In re-reading all the doctors reports which I have not looked at in years, one doctor did diagnose me with peripheral neuropathy and NOT CIDP and another polyradiculoneurpathy. So all this leads me to believe NO CIDP.
Hi Terri, good good morning!
Interesting thoughts you expressed. I never heard of mild CIDP. Since CIDP IS highly progressive, i do not see a connection of symptoms with a diagnosis, but i am not a doctor. I will research this alternative diagnoses you mentioned…i never heard of it… i am just glad this conversation has prompted you to become more proactive in seeking a clear answer to your symptoms. Yes, finding a good neurologis doctor in Florida is a big challenge. I still think going out of the area or the state is your best recourse for a firm diagnosis and subsequent treatment of some sort. You owe it to yourself to seek a definitive resolution. Seek family or friends, or hire someone to take you out of state. It would involve an overnight stay if you go out of the area. Also, maybe Atlanta has a good team of neurologists at the key hospital there. Just remember, if it is some sort of polyneuropathy, MS, CIDP, they all are progressive, so if symptoms are worsening, you should seek out a new doctor. The last medical diagnosis you had was over 20 years ago.
Best, Anne
Anne - I am not pursuing this - I am 84 and content with it the way it is and thanks to you, I am positive this is not CIDP. If things get worse (and I certainly hope not), I will take your advice. I do know there is someone in Miami at the hospital who is knowledgeable about this so I wouldn’t have too far to go.
Thanks for all your help and your suggestions and please stay well and in touch!
Terri
Hi Terri,
Thanks so much for your kind words and thoughtfulness. Best thing is that you are comfortable with your medical status and believe you probably do not have CIDP… This is wonderful news. Yes, i too thought if you had CIDP, you would have rapidly worsened, but not knowing you, this was for you and your doctors to decipher…you have a doctor to turn to.
Sorry I’ve been offline a few weeks. I had surgery called LRTI on my right hand. I am right handed too, so its been extremely challenging. LRTI is removal of the bottom portion of the thumb from acute osteoarthritis. My cartilage was gone and for a few years, i had started growing multiple bone spurs in the hand, which ultimately dislocated my thumb. Pain was severe. Surgery was January 28. I was in the hospital for 3 days getting out on the 30th. I was on lots of narcotics for pain. Then on Feb 1, i learned my younger sister passed away. Her cancerous tumor from 10 years ago had returned. By the time they found it, it metastasized and spread to her lungs. She hadn’t yet told me. Thus i was shocked to learn of her death. She was married with 2 boys in their 20s. She was only 60 years old. I was heartbroken. At 16 days of recovery and day before i was to have the cast charged, i then ruptured a tendon in my forearm. More screaming pain then… now a new cast, and still trying to take it all in and trying to recover. Its been a challenge, especially with all this and the CIDP. One day at a time for me for now.
Best regards, Anne
The electronic device I refer to in my post in complementary therapies is very similar to a tens device. You should read about my experience there . It is a recent post titled CIDP. Ask me questions if you like. Here is an article written by an MD on electric medicine. It doesn’t include the tens device but does give you a historical foundation about how electricity affects our physiology. https://www.researchgate.net/publication/257931319_The_issue_of_the_use_of_electrotherapy_for_blood_electrification_and_disease_treatment
Eric