NEW to forum

Welcome New Member Check In
1

Hi my name is Katy and I have spent the last year frustrated, and slowly losing my ability to do the the things I love. As of last summer I was still circuit training, running with my 2 kids, working long hours as a counselor and being a wife. Since then, life has certainly changed. I have been shuffled around around from specialty to specialty, with no real answer. My EMG showed demylienating poyneuropathy, but my neuro sent me to rheum for autoimmune work up. When that was negative, they recommended Mayo Clnic. Since December I strongly felt CIDP was what I had, but was told there was no test (wrong). I now am going to see a neruoimmunoligist May 5th at the Mayo Clinic and the first thing she suggested was CIDP. My symptoms are worsening, and most days I need help to care for my kids. The steroids worked fantastically for about 2 months, and now they have lost their effectiveness. Each night I hope the day next day will be a good day. I am averaging about 2 good days a week now. My main struggle is feeling like a lead weight is holding me down, and that I took a bunch of benadryl. My cognitive ability decreases, I slur from fatigue, and I literally can not wake up some days. My feet are more numb when this occurs, and now my knees and elbows are painful (I just moved). It all started after I had my second child with muscle spasms and inflammation under my shoulder blades. If you wouldnt mind reviewing this progression and see if any of it sounds familiar. I need some hope. I need my life back.

Katy Vander Kamp 10/16/1978 35 years old

Current Medications: Zoloft 200 mg QD, Clonazepam 0.5mg prn anxiety, Fioricet prn
headaches, Vit D 50,000U twice a week, Medrol 4mg three tabs per day, Nuvigil 250 mg BID,
Mirena IUD

Current Diagnoses: Pulmonary nodules 2007 (stable ), positive PPD since 2001, Hx of tubular
adenomatous polyps and 2 benign lipomas (11/2012), Lower GI bleed secondary to
polypectomy, Irritable Bowel Syndrome (improved), Idiopathic hypersomnia dx by Sleep Study
with MSLT, Demylienating Polyneuropathy in lower extremeties (2/2014), Muscle spasms (back),
Vit D insufficiency, Mildy decreased IgA (66), joint hypermobility, syncope episode with seizure
like activity 12/ 2013 (EEG),
Orthostatic Hypotension (intermittent), Tension headaches

Relative family history: Maternal aunt Rheumatoid Arthritis, Maternal aunt Crohns,, Maternal
Uncle Ulcerative colitis, Maternal grandmother (deceased) Crohn’s, 2.5 year old son
hypogammaglobulanemia requiring IVIG, specific antigen deficiency, developmental delays,Vit D
deficiency, gastroparesis, dysphagia, 6 year old daughter recurrent infections, specific antibody
deficiency

Symptom progression:
July 2011 preterm labor with 2nd child delivering at 36 weeks IUD placed September 2011
October 2011 3 mos postpartum mild scapula pain and spasm with exercise
Nov 2012 hospitalized for GI bleed (Banner Baywood)
Summer 2013 Circuit training (Frequent and Intensive Exercise last 8 years)
June to August 2013: Ability to recover from exercise increasingly difficult, pain daily, arms
increasing weak, endurance decreased significantly
Aug 2013 stopped exercise due to symptoms
November 2013 Feet became suddenly numb (mostly at rest), no pain associated
(Tried both Cymbalta and then Lyrica for 6 weeks with no long term relief experienced side
effects)
December 16th 2013 3 min near syncope episode (seizure like) at rest seated. Admitted to
Banner Baywood Observation.
February 2014 Severity of symptoms of increased: generalized weakness, cognitive processing
issues, word finding, overexertion with simple daily tasks (HR increase), brain fog, upper back
spasms, neck stiffness and reduced mobility, severe fatigue (slurring on bad days), sensory
disturbances (smells and tastes), joint stiffness, nausea and vomitting, neuropathy constant (not
painful), memory issues, 14# weight loss in one month, ability to function on daily basis declined
February 24th Due to sx had to take medical leave from counseling position (still currently on
FMLA)
February 27th 2014 ER visit for above symptoms 60
mg of Prednisone administered, and
started Medrol pack
February 28th Symptoms began to improve
March 2013 Continued daily steroid (Pred 30mg or Medrol 12mg) Significant improvement
March 25th missed steroid dose
March 26th: Woke up weak, slurring (drowsiness) cognitive processing (word finding), Body felt
like lead, joint stiffness, exhaustion, increased numbness in feet.. Banner Gateway ER. IV
Solumedrol with significant relief.
April 9th missed dose. April 10th reduced ability to function due to return to symptoms (more
mild than March 26th flare), stayed in bed all day.

Since mid April the steroids have lost their efficacy on most days even with a loading dose (24 mg of Medrol of 60 mg of Prednisone) My feet are constantly numb, and my joints are painful, the fatigue is overwhelming.


Negative studies include: TSH, Comprehensive autoimmune profile, CBC, RH factor, CK,
Lactic acid, ANA, IgG subclasses panel, Aldolase, CCP, MRI of brain, CMP, EEG, EKG
Abnormal findings: VitD insufficiency 1620
with tx, Proteinuria (x2), Nerve conduction study:
Mild Demylienating Polyneuropathy, Mildly decreased IgA (61), S, Pneumonaie titers (13/14
nonprotective)
4 years post vaccination (repeating), Sleep study with MSLT, hematuria, joint
hypermobility, CRP

Thank you for any support!

2

Hi Katy. Have you had a heavy metals test? I had both blood and urine because of similar symptoms. I was diagnosed with cidp only after 30 other tests came back negative. I know it's a dreadful process. May 4 is so close. Hang in there.

1 Like
3

I have not. and i also wondered about silicone toxicity from my IUD. I read a lot of cases. Thank you so much.

4

After conduction study my primary ran heavy metal test I came back positive for high levels of lead and manganese . To took 4 to6 months of chelation . To get to a high normal. 4 neurologist latter and finally a diagnosis.

5

Katy, I would call your doctor tomorrow and ask for them to put the order in for the tests so you can go it right away. It is an easy test but it is usually is sent to a specialty lab and takes a while to come back. Mayo will check for it I am sure but it would be better if it was one of the things ruled out already. A major medical center diagnosed me. I went to Mayo for a second opinion and they did a great job. My diagnosis did not change but I still want to know the cause of my cidp. You will be in good hands. They also host a medical research group called Biobanks. It was a grassroots startup by a mom who had two boys with a rare genetic disease and she wanted the research out in the open for all scientists to see in hope of better diagnostics and cures, which we desperately need. It is a great success all over the world. They asked if they could study my genes and I was still on the fence at the time. I have decided since that I want to do it and will probably fly back at some point. What is different about them, is they will tell us if they find something so we can help ourselves. I mention it because it is something to consider before you go, so there's time to think about it. You can look into it online. Again, it is called Biobanks.

6

Thank you! I will!

7

All I can say is hang in there! This is a great support group and so many people give the best advice because they have been though what we are going through. I wish you the best of luck!

8

Hi Katy,

I had an Electromyogram done twice. The first one with local Doctors that they said showed nothing and told me it was Neuropathy so I went to Dr. Kelly (great guy) at University of Chicago and had another one they found nerve damage. This test is VERY operator oriented and since CIDP is rare not everyone that does these tests has seen it. As a matter of fact, I am the first patient with CIDP for my Family Doctor.

To confirm the CIDP I had a Spinal Tap and they took three vials of fluid from back. After confirimation of CIDP, I have been on IVIG treatments that are Miracle workers. It's amazing how much better I can function.

I would think Mayo should have run this tests for you.

Don't know if or how much this helps but hang in there and know that we will all be sending positive thoughts and energy your way.