Unexplained symptoms and a long frustrating diagnosis

Hi, I’m a 46 year old wife & mother of a 6 yr. old little girl. I lead a very active lifestyle of travel, culture & fitness. I started having intense itching and burning in both feet earlier this year. That soon became numbness in tingling of both feet and hands and progressed into shooting, stabbing pain in arms and legs as well. I sometimes feel as if someone took a hammer and broke all 10 of my fingers or are stabbing hyperdemic needles into my feet. I have weird muscle spasms in my arm hands and arms and can actually watch my nerves jump. I cry myself to sleep when the pain seems too much to bear. I have been to a neurologist and have had 4 MRIs, (brain, C-spine, thorasic, & lumbar) a brain CT-Scan, an NCS and an EMG ( that I coyldn’t endure because it was too painful). We have discovered that I have spinal stenosis moderate to severe in C4-C7. Carpell Tunnel and nerve damage in both my hands and feet. I have had extensive bloodwork and have ruled out a lot of auto-immune diseases and deficiencies. Other symptoms include fatigueness, muscle loss and weekness, severe weight loss ( I’m down to 97 lbs from 110). It doesn’t seem like a lot but it is a very scary weight to be and I can’t gain weight. And I keep getting sick. My husband says I’m aging rapidly too. My gait is off and I’m very clumsy, I keep tripping over my own feet. I have been on 300 mg of gabapentin and doing physical therapy. I’m also fortunate enough to live in a mariguana legal state so I use CBD patches and nerve salve. Nothing seems to work. I have had symptoms on and off for 7 mos. A few weeks off or milder but I have them frequently everyday. I came across an article on the web that sounded very much like what I have been going through and he was diagnosed with CIDP. https://globalgenes.org/raredaily/mysterious-weight-loss-leads-to-diagnosis-of-cidp-chronic-inflammatory-demyelinating-polyneuropathy/ from there I found this forum and felt like a loy of these stories sounded like mine. I have yet to be diagnosed with CIDP but I have an apt wit my neurologist tomorrow and am going to bring it up with him. I’ve also researched CIDP specialists in my area and think I should ask for a referral since my neurologist hasn’t even mentioned this to me.

You have the same symptoms that my husband had. I live in a borough of NY city and the neurologists here were not able to diagnose my husband. I found a specialist
In New York City, Weil Cornell Hospital and he was diagnosed with CIDP. I advise you see a specialist for the local neurologists are not very familiar with this autoimmune disease. Good luck and God bless you!

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Hi, I was diagnosed with CIDP 5yrs ago. Had exactly the same symptoms you described. I think you need a new neurologist. Mine has been great. IVIG didn’t work for me. I’m chronic non-responsive to IVIG, couldn’t handle methotrexate. So all we’re doing is controlling the pain as the disease progresses. I take Lyrica, Cymbalta and Topomax for the pain. The Dr put me on vitamin B12 for the muscle jerks. I started taking CBD oil a couple of months ago and it made a dramatic difference for me. I take it sublingually, you may want to try that. Good luck.
Bobby

I’ve had all the types of pain you described and also extreme feelings of painful cold like in an Ice bucket for my feet and hands. My neuro put me through months of tests, I even finally agreed to the spinal tap that I did not want to do. Among other things he had my EMG repeated 2 more times, lucky for me I could not feel it at all in my legs, my legs did not even twitch. The neuro was unhappy with the EMGs saying if that he was to believe them I would not be able to walk. (I use crutches outside the house) I said to him, well thank God I can walk. He finally offered IVIG as treatment and by that point, I was just tired of the whole thing so I never went back to him. He is the top man in my country for ALS and other severe neuro diseases. Funny thing is, the Rheumatologist I had seen prior to the Neuro, not only diagnosed the CIDP on my first exam, but took me off the codeine for pain and put me on Lyrica which I still take. My disease seems to have been triggered by exposure to Agent Orange according to a VA doctor, and I’ve had slow progression for over 30 years of the symptoms. I’ve come to the conclusion that pain management and dealing with limitations such as the loss of ability to drive a car are things I have to adjust to. My reflexes are getting too slow and I’ve had so much trouble with leg twitches, cramps and putting my foot on the gas when trying to brake that it’s just not safe any longer. I’m seeing a pain specialist since Lyrica is dulling my cognitive ability and making me so exhausted that I’ve gained a lot of weight.

Sorry, I’ve talked too much about my issues, it comes from the fact that I don’t want to vent to family and friends. For you, I suggest you find a new Neuro and press for the best care you can get. This disease is very rare and many of the so-called experts just don’t understand it. The last neuro I went to did not even seem to understand CIDP at all. Recently my Rheumatologist who also sees patients for Fibromyalgia and some autoimmune diseases, put me on Ubiquinol, Magnesium, and B12 for cramps and it’s helped a lot. - Best of luck and hope you feel better soon.

I too have CIDP-MGUS and am on 800mg of gabepenten 3 times a day. It holds off most severe pain. My neuro also put together a cocktail of vitamins for muscle spasms and it sems to be working. I’m a 72 yr old with 12 years into the disease. Short term prednisone use helped get my strenth and appetite back…My prayers are with you. Jim

Thank you! I’m scheduled with a new Neurologist that specializes in CIDP. Hoping to get some answers, I had a really bad week. Good luck to you and your husband, this is not an easy condition for loved ones to deal with. It’s putting a lot of stress on my marriage. Even though he is very living, kind & supportive I feel guilty that I am not well.

Thank you! I am scheduled with a new Neurologist and I have been using CBD transdermal patches and CBD nerve salve. I haven’t tried the oil yet, but I will. I just switched from from Gambapentin to Lyrica and have been taking B12 & vitamin D. My symptoms seem to be progressing and worse at night. So I’m not sure if the Lyrica is working…but I’m on a really low dose. Just trying to find something to manage the pain.

Good luck to you too!

Yvonne

Thank you for sharing your story. I’m not sure what is causing this or if it is CIDP, since I can’t get an accurate diagnosis. I’m scheduled to see a new Neurologist that specializes in CIDP. However my current Neurologist referred me to a Neurosurgeon and thinks that surgery for spinal stenosis is the answer. I’m not sure about that. I too think that I might have fibromyalgia on top of this but nobody wants to diagnose that either. At least I have been prescribed Lyrica for my neuropathy. I was taking Gabapentin but was falling asleep & very forgetful. I’m not sure if anything will change with a diagnosis but my peace of mind.

Good luck to you too!

Yvonne

Thank you Jim,

I was on Gabapentin but couldn’t take it during the day because it made me very sleepy and forgetful. I was switched to Lyrica, but doesn’t seem to help as much with the symptoms and the pain. I’ve been worse, especially at night since taking it. I have an apt. Scheduled with a new Neurologist in a few weeks, so hopefully I will get some answers and some better medication. I’m so sorry you (as well as the others) have dealt with this condition for so long-it really takes a toll on your body as well as your life. I’ve really only had severe symptoms for about 7 mos. But when I think about it, I’ve had signs-RLS, TMJ, hands trembling, nerves jumping, foot numbness & tingling for years. My doctor said to eat more bananas. What a lot of good that did!

Best of luck to you!

Hope you can find relief. I’ve also found Lyrica to cause sleepiness,
fatigue, and forgetfulness in me. I also have a near constant feeling of
being in a mental fog that I really dislike. Even to the point that I had
the pain clinic Dr. reduce my daytime doses to try and get less fog in
balance for more pain/discomfort. So far it’s a mixed bag result wise. So
Next month I’ll ask him to try something else.

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Hi, good luck!! It took us almost 4yrs of experimentation to get the right drug cocktail for me. I take 450mg of Lyrica, 60mg of Cymbalta and 100mg of Topomax. I still felt like I had constant sunburn on my feet, that didn’t go away until I started the CBD oil. Stay in touch!!
Bobby

Finding the right mix of medication(s) can be time consuming and sometimes the results are realized immediately and at other times, nothing changes. All the time, you are suffering pain, loss of sleep, difficulty accomplishing day-to-day activity and then there is the mental health component. Many specialist in the neurological field have never dealt with this monster of an illness or have two minutes to scan the internet before meeting a new patient. I was lucky 17 years ago that I was diagnosed early and had IVIG globulin treatment within two weeks of my first symptom. That is not the norm from what I read here. It was only this past year that I was approved to use medical marijuana as part of my cocktail for treating my pain. I went through almost every other drug mentioned here before finding something that make pain bearable, but not completely gone in my feet and hands. CIDP is different in every person - but keep fighting, asking questions and searching for reliable information.