trembling

I have been feeling more run down than usual the last few days. About an hour ago, as I was standing in the kitchen my arms and legs became suddenly weak and began to tremble. Since then I have been having great difficulty walking and completing simple tasks such as typing, eating and drinking. Heart rate is within normal and I'm breathing well so I doubt I will go to ER this time unless it worsens. I also noticed that my urine is cloudy again. I will mention this to my doctor tomorrow.

My pee returned to normal on Sunday, and I have not had to use my cane or wheelchair in two full days! Yay! Still anxious to come up with a game plan with doc on the 22nd and have been adding to my list of options to discuss with her as I do research of my own. My frustration has lessened a bit as I'm trying to focusing on other things until my appointment.

Grrrrrr

I am feeling major frustration today. After exchanging emails with my doctor, we are no closer to a game plan for dealing with the porphyria that is interfering with my lyme treatment. My legs are responding a little better today after spending most of yesterday in my wheelchair, and I have not used my cane since I woke up, but am in more pain. My pee has been sort of milky/cloudy since yesterday. I have noticed this several times in the last few months, and I'm not sure what it means. I will bring it up with my doctor at our next appointment on the 22nd of this month.

My excitement for the week

A sudden gust of wind during this afternoon's storm ripped the tar off of almost 1/4 of the roof a few hours ago, sending rain water pouring into the attic and onto the porch. I managed to get up the ladder with my dad and we ran plastic sheeting up under the edge of the remaining tar and stapled it down. It only took about 10 minutes, but by then everything on the back porch was completely drenched. My music, books and papers all soggy. Dad called my little brother Drew to come help and once he arrived I got down the ladder and pulled the aluminum trim that was ripped off out of the drive way. By then both legs were shaking badly and about to give out. I made it a few feet from the porch before both buckled. With some effort I was able to crawl inside where I rested for a few minutes before attempting to stand again. No go...so I got to my wheelchair and hoisted myself into it. it has been almost 20 minutes and my legs are still shaking and I'm unable to really move them without help. I'll likely be in my chair for the evening, and maybe a bit of tomorrow.

Hitch

I am noticing lately that my left leg seems to be considerably weaker and harder to balance on/control than the right. This causes me to lose my balance mid-stride and take a few side steps to correct. It also makes rounding corners difficult - I bump into walls - and leaves my gait very halted and uneven. Nurses at the hospital said I have a 'hitch' in my walk as they saw me on the treadmill, my left leg lagging. I am considering purchasing a cane for use around the house.

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."