My 21yr battle, & Dr's are puzzled by new symptoms

So instead of writing my story, I will due bullets and a timeline to break it down. My life has been as we all know, a rollercoaster and now my marriage of 11yrs (relationship of 16) is in turmoil.

• 1993: 14yo, after a few weeks of chronic fatigue, bruising on my entire body, petechial covering me so bad I was purple and my eyes went shut. Mom couldn't awaken me, I was dx at a clinic and admitted to the hospital with no idea what was going on. Did one full week of IVIG and prednisone taper for 3 months. My normal count became roughly 125k.
  • Remission 1994-2006: 27yo, 3 months pregnant, 3x's, my platelets run40-50k all through until the 8month. I go on prednisone 60mg and give birth 10days early at 43k, naturally. No bleeding. Doctors watch me closely and find that 9months of trying to taper me off of prednisone, I will not stop dropping to the teens. I try ICVIG combo with prednisone and no luck.
    • May 2007: Splenectomy, 2 days later platelets are already in the 100k's.
      • Nov 2009: Splenectomy failed, admitted to Fletcher Allen Health Care 3 hours away with 3k. IVIG/Dexamethasone combo. Success
        • Jan 2010-current: Platelets continue to drop monthly, even with colds or infections. Tried Rituxan October 2012 with having to stop after the second dose. I got paralysis of the face and excrutiating headaches. Paralysis of the face lasted 12 days.
          • Currently I have been having new symptoms that a neurologist and Rheumatologist can not answer. I am hoping to find some answers hear. I get pain and numbness in the hands and feet, more like tingling. I have bulging discs in the lumbar and cervical region which can cause it. But I get daily headaches, R/O migraines. MRI of brain and cervical spine show no lesions. Blood tests show no lupus or RA. I have black spots in my vision. I am 34yo, perfect B/P, no Hypercholesterolemia, no diabetes. My short term memory is horrible. I want answers. I can't even hold my bladder for to long with wetting myself and have retention. I can't wrestle with my little ones or my husband. I feel lost, and he is tired of living with a 90yo. Where do I turn?????

A lot of misspelling's sorry

Melissa:

Have you ever been tested for Antiphosphilipid Syndrome? Migraines and ITP can be symptoms of that. Just one thought. Another thought is that sometimes autoimmune disorders can take time to develop enough to be diagnosed. Symptoms can appear years before blood work can show anything definitive. I had physical Lupus symptoms two years before I was diagnosed, and I was monitored every three months. The blood work became elevated slowly. You can't really rule out connective tissue disorders for that reason.

The discs in your neck could be the cause some of those symptoms. I also had herniated discs and went through it for years until I ended up with stenosis, then I had ACDF surgery. I also had the black spots in my vision, especially when I was stressed. I managed it with massages and chiropractic care, heat, ice, physical therapy and whatever else I could come up with. Have you had an MRI on your neck lately to be sure it's not stenosis? Mine was pretty bad by the time it was caught - the disc was embedded half-way into my spinal cord and I have permanent damage.

The problem with those symptoms is that there can be one cause or more than one cause. Nailing it down is the tough part.

Funny you say stenosis. My MRI's were done around October and the lumbar one showed Spinal Canal Stenosis. I still have not done much research. So the black spots could be linked?? I will talk to my hematologist about doing labs again. He was the one who became concerned first with my symptoms. I can sleep 16 hrs/day, yet my thyroid levels have remained stable so far. The doctors keep saying your depressed, your bipolar, etc. oh the fun one was in 2002 when I was dx fibromyalgia and a month ago, apparently it was a mistake and now its all in my head, grrrrr.....Let me call my dr and see what I can do. He is 3hrs away and such a horrible drive in the winter. Ty.

All of those symptoms can be linked to spinal problems. My problems began about 16 years ago. I was first diagnosed with loss of C curve in the neck which caused grueling daily headaches and the black spots. The loss of C curve caused muscle tightness of the shoulders and neck, and stress only made that worse. My job was really stressful at the time so I couldn't get away from it. I used to go to the chiropractor twice a week and as soon as he'd adjust me, the spots would go away until the next day.

I did that for years and then found out that I had two herniated/bulging discs. Since those usually just heal, no one suggested follow-up. I stopped going to the chiropractor because adjustments can cause strokes and I'd had ITP and APS which only raised that risk, so I started getting massages. When I kept the muscles relaxed, I had less symptoms.

It never did get better and I got to a point where I couldn't look up. My head would lock up. I just kept living with it all until I began to have shooting pain down my arm and total numbness. I was pretty sure I had stenosis and requested an MRI. Sure enough, it was pretty advanced. Depending on where the spinal cord is affected, it can cause loss of bladder control, muscle weakness in arms and legs, pain, etc.... Some doctors will tell you that some of those symptoms are not related; my Neurologists did. But by doing research and knowing my body, I am positive that they are connected. It all went away too after the surgery a year and a half ago, except for the muscle weakness which continues. But, I also have Lupus myalgia and have been on Prednisone for 8 years, so I'm sure that contributes too.

The neck problems are slowly coming back, so I suspect that another disc or two is probably affected. Have you seen a Neurosurgeon? I'd think that's where you need to start.

I saw a neurologist for the c-spine only in order to r/o MS. He sent me to a rheumatologist. I called a little bit ago, me Hematologist in Burlington VT. which has amazing specialists. He is getting me in on the 5th but he is having a meeting tomorrow to discuss my case with his nurse and she is going to try to get me in ASAP in order to figure out what to do. She understands my problems and knows now my struggles with work, nursing school and 3 small children. They are awesome there and I wish I hadn't put this on the back burner for so long. It has been a year since I have even seen him.

Well if spinal stenosis is the problem, you'd need to be referred to a Neurosurgeon. Only he can decide if it can be treated or if surgery is necessary.

www.spinalstenosis.org/incontinence.php

www.spineuniverse.com/conditions/spinal-stenosis/spinal-stenosis-symptoms

backandneck.about.com/od/conditions/ss/spinalstenosis_2.htm