New Symptom

In the last 3 weeks I have developed a new symptom. Jerking in my legs and feet. I have had muscle twitches and spasms for years but this is different. It feels the same as when my reflexes are tested by tapping below the knee, only the lower part of my leg just jumps at random without any outside stimuli. sometimes it's just from the ankle down. It is very bizarre to be lying in bed and see both legs suddenly leap up as if startled.

In other news, I purchased a wheelchair today. My legs have been so weak and with the jerking I do not feel steady on them so I purchased the chair so I can still have a bit of freedom outside the house if there's someone around to push me.

Pothole

I have hit not a speed bump, but a pothole on my road to recovery. After nearly 3 months of pain, appetite loss and severe weakness I feel I am about to lose my mind. I have lost 10 lbs and have been in the hospital twice with heart palpitations and trouble staying on my feet. My doctor believes I may have a rare blood disorder known as Porphyria. The type she suspects I have is acute intermittent which means it comes in the form of painful "attacks" which can last for days or weeks. Testing to determine if one has this can only be done in the worst part of one of these attacks. I have the kit to test at home and am waiting for an attack..after that it will be several weeks before the results come in. In the meantime I have gone off all of my Lyme meds, as my body is simply too weak to handle the herx reactions :(
I have been attempting to broaden my circle of support by calling friends and family in town for help with fund raising and emotional support. But most of my contact has been either brushed off or completely ignored. I am now looking once again outside my dwindling circle :( This is a sad time for me....one I look forward to overcoming.

Here is an excerpt from Genetics Home Reference about Porphyria:

"Porphyria is a group of disorders caused by abnormalities in the chemical steps that lead to heme production. Heme is a vital molecule for all of the body's organs, although it is most abundant in the blood, bone marrow, and liver. Heme is a component of several iron-containing proteins called hemoproteins, including hemoglobin (the protein that carries oxygen in the blood)."

"......acute porphyrias, primarily affect the nervous system. These disorders are described as "acute" because their signs and symptoms appear quickly and usually last a short time. Episodes of acute porphyria can cause abdominal pain, vomiting, constipation, and diarrhea. During an episode, a person may also experience muscle weakness, seizures, fever, and mental changes such as anxiety and hallucinations. These signs and symptoms can be life-threatening, especially if the muscles that control breathing become paralyzed. Acute porphyrias include acute intermittent porphyria and ALAD deficiency porphyria. Two other forms of porphyria, hereditary coproporphyria and variegate porphyria, can have both acute and cutaneous symptoms."