New to CIDP I Think
AnonymousApril 20, 2014 at 4:41 pm
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.
April 20, 2014 at 8:22 pm
Hi C.P. and welcome to our forum!
I assume from your post that you live in the Tampa area, please correct me if I’m wrong. There are some experienced CIDP specialists in that area, please see this topic for more info:
Your symptoms sound a bit like mine and I have CIDP and a variant called Miller Fisher Syndrome (MFS). It is the MFS that I think you may want to look into as a possibility. There is a good booklet about it here:
Additional info and other resources can be found here:
Another possibility might be Diabetic Peripheral Neuropathy (DPN). An estimated 60-70% of Diabetics suffer from peripheral neuropathy. Read a DPN informational brochure here:
Additional info and other resources are here:
If it seems you may have MFS and you want to confirm or deny it, you should contact an experienced neuromuscular doctor. Based on what I have read from other Florida residents, its common practice there for doctors to re-run tests that were just run. I don’t understand why that is, but apparently it is to be expected in that State (hopefully insurance will pay for the duplicates).
Wishing you the best in finding a good doctor.
April 21, 2014 at 2:35 am
The GBS-CIDP Foundation has a chapter in Ft Myers. Maybe they can provide some good doctor referrals that are closer to home:
FLORIDA (FT. MYERS)
Fort Myers, FL 33919
AnonymousMay 26, 2014 at 3:26 pm
I had similar time line. It took 3 years for me to get a dx. After thinking it was ALS for a year they ruled it out and dx with cidp. It was a relief. At first I thought it was injuries from wrestling and football in college, I kept falling. Someone noticed I had a drop foot. I would workout like a maniac get in shape then get way layed by fatigue. I would get depressed and fat, and I thought I was just lazy. After finding a good neuro and fighting with my Insurance, I finally started IVIg. I felt a little wore out after the load dose but feel great now. I think once you get the right DX it will change your life. Once you know the problem you can begin to solve it, and that is a relief in itself.
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