My CIDP Story

So far, this health journey has been quite interesting …

From a Lyme Disease diagnosis in 2010, multiple co-infection diagnosis in 2014, years of oral and IV antibiotics, herbal remedies, and restrictive diets, to intensive treatment including whole body hyperthermia and plasmapheresis in 2019. I have gone through a number of tests, dozens of vials of blood have been drawn, several EMGs completed, brain MRIs, skin biopsies, and autonomic tests. I have been off ALL treatments in 2020 and as of 2021 I received a diagnosis of CIDP (Chronic Inflammatory Demyelinating Polyneuropathy).

Since November 2019, my autonomic neurologist and PCP have retested my autonomic dysfunction and scanned my brain additional times after my KSG treatment. At first, my results were going in the wrong direction. I communicated with KSG and they said to give recovery some more time. It was discouraging to have my results come back worse, but I chalked it up to recovery from treatment in Germany. Now I can look at each new test result as a marker point to my healing progress.

I was still feeling well, so I really didn’t want to overthink any of it.
I was finally able to travel, do things, and take on new responsibilities.

I was so ready to take a break from medication.
Stop all treatments, and just carry on with my life!

In mid-2020, although I was still feeling mostly better, I was experiencing increasing nerve concerns. I became more dizzy upon standing and my extremities began feeling more weak and am no longer ticklish on my left side, while my right side is intensely ticklish. My MRI scans and autonomic test results continued to show ongoing nerve and brain damage, bloodwork showed increased inflammation as well. I was diagnosed with moderate-progressing Small Fiber Neuropathy and the tilt test proved that I have developed full-blown POTS (Postural Orthostatic Tachycardia Syndrome, a condition that affects blood flow). Despite my worsening results, since I had been feeling better, my doctors and I decided to wait on pursuing treatment but still put in a long shot request for IVIG with my insurance company; that request was later denied.

In early 2021, additional MRIs and testing show that there are increased number of lesions along with redemonstrated white matter foci, a new 1.1 cm lesion adjacent to the left occipital horn, and punctate T1 hypointense focus in the left cerebellar white matter. The imaging appearance is most compatible with a demyelinating process such as multiple sclerosis. Skin biopsies show that my nerve damages have increased tenfold and continue to decline as well.

With all of this in mind, I asked my neurologist how to best pursue my next course of treatment. It was still recommended to pursue IVIG. The request was resubmitted, it was denied, I appealed the denial multiple times, only to continued to be denied. My symptoms continued to worsen and my doctor officially diagnosed me with CIDP; which is treated with IVIG, steroids, and or plasmapheresis.

It wasn’t until my symptoms and condition progressed into an autoimmunity that insurance finally decided to cover IVIG treatment.

I believe that when I went to KSG in 2019, I may have already been dealing with this progressing disease. I had plasmapheresis at the Klinik and it was the most refreshing and one of the most helpful therapies while I was there. I remember saying, “I wish I could get this treatment regularly.” I mentioned this to my doctors last year and it was immediately recognized that something bigger was going on, which is what led to the further testing and the eventual new diagnosis.

WHAT IS CIDP?

According to Cedars-Sinai, CIDP occurs when the body’s immune system attacks the myelin sheaths around nerve cells. But exactly what triggers this isn’t clear.

Symptoms are usually the same for all types of CIDP. They can include:

  • Tingling in the arms and legs
  • Gradual weakening of the arms and legs
  • Loss of reflexes Loss of balance and your ability to walk
  • Loss of feeling in the arms and legs, which often starts with not being able to feel a pin prick
*image from Cedars-Sinai

My current symptoms include great weakness in my legs, burning and tingling in my feet, and loss of sensation on my left side. Sometimes it feels like my legs are not there, despite them feeling like they are burning constantly. I’m not sure how to best explain it. I have a weakened left side and walking is more abnormal than usual (I have always walked a little funny).

The best way to describe the feeling is to compare it to that of when your arm, hand, or other extremity “falls asleep” and it hurts until the blood flow is restored. Imagine that feeling, but just while you’re doing your regular things, not sleeping. The feeling doesn’t just “shake out“, it’s constant.

I was hospitalized in September 2020 due to an injury from cycling that caused rhabdomyolysis in my leg. It was severe, I was in the hospital for a week, and I believe now that it may be directly related to my CIDP diagnosis and increased weakness.

Thankfully, I begin IVIG treatment tomorrow, August 13th, 2021
(date inserted for my reminder)

I was told by a friend today that when she had treatment she had extreme peripheral neuropathy in all limbs and as of now, she has regained all feeling.

IVIG is a proven treatment for CIDP, at my age (34) I should have great success in regaining strength and regenerating some of my damaged nerves.

My doctors are all confident and hopeful for me to reach remission.

Typically patients with CIDP will have to be on therapies for approximately at minimum 2 years. Once the symptoms subside, many patients find that they can remain off therapy for quite some time, even up to 5 years. But eventually, relapse may happen and follow-up treatments may be required. Sometimes, if IVIG doesn’t work alone, some patients add in steroids to help reduce inflammation and when that doesn’t work, plasmapheresis may be a reasonable option. (For me, I already know the benefits of plasmapheresis benefits!)

Check back and Follow in for More updates soon!

Keep on Keepin’ On!

All the best,

Tommy F

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