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New clues for the mystery illnes
I hate categorizing this under diagnosing MS, because no lesions in brain or cervical spine probably are a good indicator it's not MS. However, there aren't many options and so it will be . . .
For anyone who has been following this mystery that came on heavily with lots of neuro symptoms all at once, we have some new clues, albeit small ones.
After being tested by a rheumy, it was discovered one of my complements was low (C3), almost borderline, but several ticks below the normal range of 90+. Mine was about 87. The other thing she found was WBCs in a UA, but subsequent culture revealed there was no infection. The week prior, my blood calcium level was 11, high, but not stratospherically high. But high, considering all of the other blood Ca were 9.6. It was tested again last week and back down to 9.6. I'm not sure if it was related to the C3 and WBCs in UA, maybe a kidney issue? But they were all tested within a week of each other.
I've been on 50,000 IU of VitD for three, almost four weeks now. This also tested low at 25. I foresee more needle sticks in my future, possibly this week. GP follow up tomorrow, IDS follow up Wed, and NCS and possible EMG Wed.
Oh yay!
I'm now running the first real fever (100.4 spikes) in nearly a month that started firing up last Friday. Even so, I'm feeling quite well and making the most of this dry spell to catch up and prepare for the holidays. Almost all the neuro symptoms that plagued me for months are gone, except during the fevers. I do still get a big muscle spasm here and there every few weeks, but am now starting to taper off of the baclofen despite the spasms. The neuro thinks it might have been interfering with my spatial perceptions and timing, and possibly the reason why I had the finger cutting incidents in the kitchen. At first I fought him over it, fearing I'd become a quaking, spastic, twitching mess with raging headaches without it. But so far, it's going very well. And I am thinking more clearly. And driving is no longer a challenging game of space invaders as it was before.
I'll remember to check my temper next time he makes a suggestion that might actually be good for me. LOL. I hope he forgives my irritability and frustration over this whole thing. It's challenging to not worry about what comes next when you've seen how terribly fast things can become non-functional out of the blue.
For anyone who has been following this mystery that came on heavily with lots of neuro symptoms all at once, we have some new clues, albeit small ones.
After being tested by a rheumy, it was discovered one of my complements was low (C3), almost borderline, but several ticks below the normal range of 90+. Mine was about 87. The other thing she found was WBCs in a UA, but subsequent culture revealed there was no infection. The week prior, my blood calcium level was 11, high, but not stratospherically high. But high, considering all of the other blood Ca were 9.6. It was tested again last week and back down to 9.6. I'm not sure if it was related to the C3 and WBCs in UA, maybe a kidney issue? But they were all tested within a week of each other.
I've been on 50,000 IU of VitD for three, almost four weeks now. This also tested low at 25. I foresee more needle sticks in my future, possibly this week. GP follow up tomorrow, IDS follow up Wed, and NCS and possible EMG Wed.
Oh yay!
I'm now running the first real fever (100.4 spikes) in nearly a month that started firing up last Friday. Even so, I'm feeling quite well and making the most of this dry spell to catch up and prepare for the holidays. Almost all the neuro symptoms that plagued me for months are gone, except during the fevers. I do still get a big muscle spasm here and there every few weeks, but am now starting to taper off of the baclofen despite the spasms. The neuro thinks it might have been interfering with my spatial perceptions and timing, and possibly the reason why I had the finger cutting incidents in the kitchen. At first I fought him over it, fearing I'd become a quaking, spastic, twitching mess with raging headaches without it. But so far, it's going very well. And I am thinking more clearly. And driving is no longer a challenging game of space invaders as it was before.
I'll remember to check my temper next time he makes a suggestion that might actually be good for me. LOL. I hope he forgives my irritability and frustration over this whole thing. It's challenging to not worry about what comes next when you've seen how terribly fast things can become non-functional out of the blue.
I think we posted at the same time because I just now saw this.
I'm not sure about the two. There are other bladder issues too, and maybe that's why he referred me there first. Interesting, I never thought of the difference between the two, but you're probably right.
The infectious disease doc doesn't seem to think anything will come of the visit to the urologist. Not sure what's with the older docs squashing hope for finding an answer when another doc orders a referral. Hrm.
Yesterday, there were RBCs in the urine sample but no WBCs as per the lab results. Culture again was negative.
Nerve conduction studies of the arms were normal today. No large fiber issues. No nerve compressions.
I'm not sure about the two. There are other bladder issues too, and maybe that's why he referred me there first. Interesting, I never thought of the difference between the two, but you're probably right.
The infectious disease doc doesn't seem to think anything will come of the visit to the urologist. Not sure what's with the older docs squashing hope for finding an answer when another doc orders a referral. Hrm.
Yesterday, there were RBCs in the urine sample but no WBCs as per the lab results. Culture again was negative.
Nerve conduction studies of the arms were normal today. No large fiber issues. No nerve compressions.
I don't know what's up with the calcium and kidneys, but hope to find out here shortly. I'm wondering if a temporary kidney problem can cause a transient spike in blood calcium, although I haven't done much searching on it. Too much reading. I'm losing interest and ready to float along and let them sort it all out.
Maybe the nerve conduction studies tomorrow will show something. I have a feeling they might. I asked the neuro if NCV and EMG would show anything, he didn't think they would but ordered them because I wanted them. The in-network office they referred me to never called to schedule the tests, and I had so many other appointments I never followed through on it.
Then after the C3 came back low and the sterile pyuria showed up, I sort of got in trouble for not having that NCV result on his desk at the last follow up. Hmm. Now he wants it. Okay. No problemo. Had it scheduled in his office instead because the other office didn't have any openings until the end of January. Yikes!
Maybe the nerve conduction studies tomorrow will show something. I have a feeling they might. I asked the neuro if NCV and EMG would show anything, he didn't think they would but ordered them because I wanted them. The in-network office they referred me to never called to schedule the tests, and I had so many other appointments I never followed through on it.
Then after the C3 came back low and the sterile pyuria showed up, I sort of got in trouble for not having that NCV result on his desk at the last follow up. Hmm. Now he wants it. Okay. No problemo. Had it scheduled in his office instead because the other office didn't have any openings until the end of January. Yikes!
Would a nephrologist be a better doctor to see then a urologist? I thought a urologist he did more testing of the function, and surgical stuff, like stones, where as a nephrologist does the medical stuff like kidney disorders and blood pressure and diseases.
Hoping you get your mojo back too!! LOL , So what is up with calcium and kidneys..?? I never researched it so I have no clue. I have been told by my endo, GP, and neuro that they will keep a watch on how my organs are taking in all the medications that I am on. I am taking a seizure medication, synthroid, celexa, zanaflex, and vit. D.
I wish I knew how to answer your question. it is definately frustrating !!!!!! Please keep us informed,
Hugs, Pamela
I wish I knew how to answer your question. it is definately frustrating !!!!!! Please keep us informed,
Hugs, Pamela
You are right as far as my endo. looking into parathyroid. I was dx with graves disease 7 yrs ago. I have been through all sorts of h*** with it. I have also been to a cardiologist who says my heart is good, however, my 1st neuro read over my 1st round of heart tests and said I have mitral valve prolapse.
My muscle twitching is basically in my left foot, left thumb, left butt cheek (sorry LOL), and my left side of my stomach, this is the side that the vibrating foot is on as well. I have had my lip twitch one time and it was right in front of my neuro.
muscle cramping and spasms occur in the neck and upper back on left and right just not at the same time, and also on the left hip. I have had cramping pain on my right upper thigh as well.
I was told that i am a fairly good candidate to have osteoarthritis!! YaY!! One more thing to add to the growing list.
I have to get bloodwork done on thursday and back to see him next wednesday to find out the results, I will def. share my results.
Thanks Bob for the info, it makes more sense the way you described it than the way my doc. told me .
My muscle twitching is basically in my left foot, left thumb, left butt cheek (sorry LOL), and my left side of my stomach, this is the side that the vibrating foot is on as well. I have had my lip twitch one time and it was right in front of my neuro.
muscle cramping and spasms occur in the neck and upper back on left and right just not at the same time, and also on the left hip. I have had cramping pain on my right upper thigh as well.
I was told that i am a fairly good candidate to have osteoarthritis!! YaY!! One more thing to add to the growing list.
I have to get bloodwork done on thursday and back to see him next wednesday to find out the results, I will def. share my results.
Thanks Bob for the info, it makes more sense the way you described it than the way my doc. told me .
He is now thinking of this in terms of a systemic inflammation - but not coming right out and saying it - I can just tell by him piecing the parts together . . . joint inflammation, nervous system inflammation, bladder/kidney inflammation, fever, weight loss, hair loss, it's all there.
So, let's say the urologist finds something significant. What does he do? Send me back to the rheumatologist who says I don't have lupus because my ESRs, ANAs, self-antibody titres, and CRPs are all within normal range?
Curious.
So, let's say the urologist finds something significant. What does he do? Send me back to the rheumatologist who says I don't have lupus because my ESRs, ANAs, self-antibody titres, and CRPs are all within normal range?
Curious.
Low calcium can cause a lot of the problems, but mine has never been caught low. GP today says because of the normal calcium test last week, we are done chasing parathyroid and now moving onto the bladder/kidney issues causing the WBCs.
Urologist appt. next week. Fever is back up, and fatigue and malaise has caught me once again.
Ah well. It was a nice three-day run of hyperproductivity while it lasted. Maybe in a couple of days I'll get my mojo back again.
Mojo . . . mojo . . . where are you, my mojo?
Urologist appt. next week. Fever is back up, and fatigue and malaise has caught me once again.
Ah well. It was a nice three-day run of hyperproductivity while it lasted. Maybe in a couple of days I'll get my mojo back again.
Mojo . . . mojo . . . where are you, my mojo?
Pamela, just thinking about "Low Calcium, pins & needles, glucose stability, etc:
Signs and symptoms of hypoparathyroidism can include:
* Tingling or burning (paresthesias) in your fingertips, toes and lips
* Muscle aches or cramps affecting your legs, feet, abdomen or face
* Twitching or spasms of your muscles, particularly around your mouth, but also in your hands, arms and throat
* Fatigue or weakness
* Painful menstruation
* Patchy hair loss, such as thinning of your eyebrows
* Dry, coarse skin
* Brittle nails
* Anxiety or nervousness
* Headaches
* Depression, mood swings
* Memory problems
Hypoparathyroidism and psued0-hypoparathyroidism are very, very rare. Most doctors are taught that they will never see this unless the thyroid is surgically removed, but there are a few rare cases for non-functional parathyroid glands or an acquired resistance to parathyroid hormone (PTH.)
You'll also undergo blood tests, and the following findings may indicate hypoparathyroidism:
* A low blood-calcium level
* A low parathyroid hormone level
* A high blood-phosphorus level
* A low blood-magnesium level
Your doctor may also order these additional tests:
* Electrocardiogram (ECG). This test involves taking electrical readings of your heart's activity. It can detect arrhythmias associated with hypocalcemia and, in turn, hypoparathyroidism.
* Urine test. Evaluation of a sample of your urine can show whether your body is excreting too much calcium.
* X-rays and bone density tests. These can determine whether abnormal calcium levels have affected the strength of your bones.
Just an idea.
Bob
Signs and symptoms of hypoparathyroidism can include:
* Tingling or burning (paresthesias) in your fingertips, toes and lips
* Muscle aches or cramps affecting your legs, feet, abdomen or face
* Twitching or spasms of your muscles, particularly around your mouth, but also in your hands, arms and throat
* Fatigue or weakness
* Painful menstruation
* Patchy hair loss, such as thinning of your eyebrows
* Dry, coarse skin
* Brittle nails
* Anxiety or nervousness
* Headaches
* Depression, mood swings
* Memory problems
Hypoparathyroidism and psued0-hypoparathyroidism are very, very rare. Most doctors are taught that they will never see this unless the thyroid is surgically removed, but there are a few rare cases for non-functional parathyroid glands or an acquired resistance to parathyroid hormone (PTH.)
You'll also undergo blood tests, and the following findings may indicate hypoparathyroidism:
* A low blood-calcium level
* A low parathyroid hormone level
* A high blood-phosphorus level
* A low blood-magnesium level
Your doctor may also order these additional tests:
* Electrocardiogram (ECG). This test involves taking electrical readings of your heart's activity. It can detect arrhythmias associated with hypocalcemia and, in turn, hypoparathyroidism.
* Urine test. Evaluation of a sample of your urine can show whether your body is excreting too much calcium.
* X-rays and bone density tests. These can determine whether abnormal calcium levels have affected the strength of your bones.
Just an idea.
Bob
I am interested in this .... I had just seen my endocrinologist, and as he pointed out that my thyroid levels are stable at the moment,, my calcium is a bit off, he also said something about my dehydration?? I believe I have had more water than I normally do. I also take vit. D 50,000 units 1 x week.
I wonder if having this mysterious whatever it may be, can cause all of the other things to go haywire.. Over the summer I had to have an 8 hr. glucose test because after i ate a bowl of sugar filled ice cream, my sugar was 60. The 8 hr. test showed normal.
It seems to make other body functions to be off a bit. Of course i do not know much, being that I am in limbo, but I do know my body and all of these crazy things that keep showing up, are the sign that something is just not right.
Not only are my blood tests looking screwed up , but I have been having alot of spasticity in the past month.
Pamlea
I wonder if having this mysterious whatever it may be, can cause all of the other things to go haywire.. Over the summer I had to have an 8 hr. glucose test because after i ate a bowl of sugar filled ice cream, my sugar was 60. The 8 hr. test showed normal.
It seems to make other body functions to be off a bit. Of course i do not know much, being that I am in limbo, but I do know my body and all of these crazy things that keep showing up, are the sign that something is just not right.
Not only are my blood tests looking screwed up , but I have been having alot of spasticity in the past month.
Pamlea
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