New to CIDP maybe?

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1

I am new to this group and looking for information, knowledge, support and direction if that is possible.

My history; I started have issues with the right side of my face, shoulder, arm and hand in the fall of 2004. I was diagnosed with degenerative disk in my neck. I was treated with pain med's, muscle relaxers, steroid shots and physical therapy. In September 2005 I had neck surgery (cervical fusion C4/5 and C6/7. In January 2006 I again started having flair ups of numbness, burning and tingling on the right side of my face. I was told by my neurosurgeon that this was not from my neck issues. From 2006 to 2012 these symptoms would flair up occasionally maybe once to twice a year for a short time (1 to 3 days) and only on the right side of my face.

In November 2012 the symptoms started again on my face and slowly intensified to include my shoulder, arm and hand. I was admitted to the hospital for high blood pressure (I have been on blood pressure and cholesterol med's for 10 years) and possible stroke. All my testing came back negative and was released once my blood pressure was controlled (3 days). After being released I started have problems with fatigue, dizziness, confusion, problems with concentration, anxiety, high heart rate and blood pressure control.I was checked for renal artery blockage (negative), kidney failure (negative) and diabetes. I was diagnosed with diabetes type 2 in Jan 2013 and put on metformin. These symptoms went away in Jan after multiple changes to my medications. In March the symptoms on my right side of my face flared up again for about 3 days.

On May 17th 2013 I started having numbness, burning, tingling and ringing in my ear again on my right side from my jaw line to the top of my head. These symptoms started from when I woke up to when I went to sleep. At different times of the day the symptoms would intensify and effect the vision in my right eye (blurred, hard to focus), ringing gets loader, pain on my face, ear, above my eye, head ache, neck pain, metallic taste in my mouth and pain that radiates down my shoulder to my hand (all on my right side). I also get moments of fatigue lasting 15 to 30 minutes. These flair ups can last minutes to hours. The pain level is 2-4 normally and 6-8 when it flairs up.

A month later I started have numbness, burning, cold, sharp pain (pain moves around to different areas) on my right foot and lower leg. The numbness is always there the burning, cold and pain comes and goes. Seamed to flair up in the afternoon and evenings. When it flared up the symptoms moved up my leg to my knee and thigh. About a week later the same symptoms started on my left foot and then up this leg also. Although not as strong as the right side.

Currently the symptoms on my face have remained the same, they are always there but seam to flair up with weather changes, stress and fatigue. Both of my feet are always numb, tingle, cold and burning. In October of 2013 my legs started feeling heavy and stiff, sometimes it was hard to walk that lasted for about 1 month before subsiding. About 6 weeks ago I started having little twitches in both of my calves and feet. If I stand for more than 10 minutes I start have a sharp pain behind my right knee that shoots up and down my leg and gets stronger the longer I stay standing. The pain does not go away if I walk, stand, bend my knee or take weight off on it. Once I sit down it will go away in a couple minutes.

I started going to Shands Neurology Department in July of 2013. After Mri's, spinal tap and nerve study they diagnosed me with a neuropathy that they felt was from a virus and that since my symptoms seamed to be getting better in January 2014 that the virus was gone and most likely my body was healing on it's own. Since I did not feel like my symptoms had improved I made an appointment with a MS specialist at USF.

Last week 4/9/2014 I had an appointment with my new neurologist at USF Department of Neurology. After my physical exam, review of my history and test results. He felt that that I did not have MS and that my spinal tap and nerve study most seamed to suggest CIDP and referred me to another doctor in his office that is a neuromuscular specialist.

My appointment with the neuromuscular specialist was on Thursday 4/17/2014. He is differently is not a people person. He did not seam to have reviewed any of my previous blood work, nerve study, MRI's or symptom history. He did a two minute physical exam, did not look at the blood work that was ordered by the referring doctor the week before or at my nerve study when I asked if he had reviewed it and never asked a question or reviewed my history with me. He did do a new nerve study that he says is normal. He feels that my face issues and leg issues are separate problems. He thinks my face symptoms are from a trigeminal nerve issue. Although at Shands they did an MRI that they felt ruled that out. I also don't think my symptoms match trigeminal symptoms. He feels that my leg issues are a small nerve neuropathy caused by my diabetes and that I do not have CIDP. I have asked every doctor I have seen over the last 18 months (general physician, diabetic, kidney, cardiologist and neurologist) if the issue with my legs could be from diabetes, all of them have said NO. The doctor has ordered additional blood test (immunofixation, immunoglobulins, methylmaloic, sjogren's antibodies, vitamin B6 & B12, ANCA screen and creatine kinase). The first doctor at USF prescribed gabapentin (300mg twince a day) for my pain and discomfort. The neuromuscular specialist did not even know that I was prescribed the medication and when I asked him if I should keep taking it, he said no since I did not have any pain, when I told him I do have pain then he said I should continue taking it.

I am sorry for this long and rambling story, but I hope you can see my frustration and confusion. I do plan on doing the blood work to see what he finds (I am hoping his strength is in diagnostics) but I am not sure if I trust him from my first visit.

So I'm not sure if I have CIDP or belong in this group, but it seam like most of you have been on this long journey and maybe someone can aim me in the right direction.

Thank You,

C.P.

2

What exactly did they find in your spinal tap? How did they conclude a viral infection? I am a physician and might be of a lil bit of help. Even though we are barely taught much about cidp I’ve learnt a lot since my mom was diagnosed.

3

The doctor at Shand’s said my spinal fluid test came back as normal. He said the virus was gone and that it would take awhile for the damage to heal. The neurologist (1st) at USF said that my protein was high but my white blood cells were normal and that was why he suspected CIDP.

C.P.

4

The leg symptoms sound like mine. Rubbing or using light massage or very mild massager helps with the sharp pain. I would go to a neurologist, that's who helped me. We have enough pain, the last thing we need is a doctor who is a pain.

5

I think you may fall into my category. I also have a neck injury at the c-5/c-6 level. I was diagnosed with CIDP last November but there was a problem with the doctor and he was fired. So the CIDP diagnosis did not stick. I had 2 choices, to have the spinal tap or the nerve study again. Since many people do not show the protein in the spinal tap and I had one before and had a lot of trouble with it, I chose to do the nerve study again. I had gotten a bit better and I believe I have some nerve regeneration as a few of my symptoms have disappeared but not the extreme pain. These symptoms seem to disappear for me about once a year and each year the time get shorter and less symptoms go away each year.

So the nerve study didn't show as bad as the one in November and I did ask if the study itself still stood and just not the diagnosis and I was told the study did stand. But because of the neck injury I have high reflexes which are not shown with CIDP and it makes it very difficult for people with other spinal injuries to get a diagnosis.

I don't know how you can get anyone to understand what is going on, but I do believe my neurologist who is a vascular neurologist does believe from seeing me since 2005, that this small improvement will be short term and I'm probably in this regenerating process. So he is going back to and have one of the other neurologist look at my nerve study to see if there can be a diagnoses change.

I hope you will get some correct diagnosis. If you have a copy of your nerve study, I'd look at your F waves and see if their in the 30's to low 40's no higher. The gaberpentin did not help me at all so I am off that and had been on the Fentanyl patch witch is very strong and I also got off of that and still no difference in pain.

A lot of people think you need to go by the spinal tap and if it showed the protein then that is great, but most studies now show that the spinal tap is pretty obsolete because so many people with CIDP never show the protein.

The best thing though is to make sure you are with a neurologist that you feel you can trust. That is the most important thing I have found. If you don't have the trust then I'd keep searching because I've been to a few scary doctors myself.

6

I, too, am experiencing facial paralysis, ringing in the ears, loss of hearing, intermittent vertigo, headaches, and much discomfort around my left eye. This all started in May 2013, after almost twenty years of peripheral neuropathy in my feet and hands. Pain is intense in feet and toes. Numbness in hands has steadily crept up to elbows. I have lived with the hands/feet neuropathty for so long; however, the facial/cranial involvement is a whole new issue for me, and the most limiting. I no longer feel safe to drive; my vision has steadily worsened, and the fatigue is just debilitating. CIDP was my diagnosis after two days of testing at UAB in August 2013. IVIG was started in-patient in November 2013, with five days of 4-6 hour infusions each day. The pain in my feet began to subside within days. My face began to normalize within 2-3 weeks, and I felt “almost” alive within 3-4 weeks. This all lasted about 6-8 weeks before symptoms began to slowly return. IVIG was approved by my insurance carrier for 3-month interval infusions. I was almost bedridden by the time I received my second 5-day regimen of IVIG in February 2014.

A change of IVIG brands resulted in less improvement. Now I am 9 weeks out from this infusion, and unable to function again. The ringing/buzzing in my ears, and the extreme pain in my upper legs (thighs) is ever-constant. I definitely need more frequent IVIG infusions, using the original manufacturer, if I am going to have any life at all.