What is going on???

[Honeybun]

For the last few days I have just been so breathless. Yesterday was the worst, chopping fruit in the kitchen required a lay down, which was short lived and ended up vomiting. I am also getting muscle spasms on my eye and lip, as well as in my fingers. Boy they can bend back rigid or do the Vulcan V sign (which I can't do normally} and stay like that for a while.

Again today more vomiting and breathlessness (like I have done a marathon).

I went to the doctors today and he has referred me to the hospital to check my levels. Just waiting for my ride.

[Chirley]

Sorry to hear you're not well. Hope the hospital finds the cause.

I quite often get the finger spasm, stuck in one position thing. (GP called it Tetany). I also get lots of facial tics. The GP says its my low calcium. The Physician says its my low copper and neuro disease.

I just know its unpleasant.

Chirley

[Honeybun]

I am hoping it is just a vitamin deficiency. Just before my dx my doc was investigating MS because of the spasticity in my neck and hands and ankles. As well as me getting blurred sight. I thought it was poor circulation. Never got around to having the MRI. I am having epidurals in my neck now and cortisone shots in my shoulders which does give some relief.

Really not keen on the Elvis lip though.

Sorry for the winge, sick of feeling like a hypochondriac! I don't have a very sympathetic boss.

(sooky) Honey

[Chirley]

Oh my God. Someone with my symptoms.

I can't believe it!

First person ever.

Has the doctor checked your copper and caeruloplasmin level?

I thought there was someone else on this forum a few years ago with the same thing but they ended up having some kind of nervous system infection.

I'm almost crying, thinking there is maybe someone out there like me.

I had a lumbar puncture and it was abnormal and had 14-3-3 protein which is a marker of CJD and indicates nerve cell death.

Please, please let me know what happens. I'm desperate to find someone with my problem.

Chirley

[Cheryl C]

And you are both in Australia!

I'm sorry you are feeling so unwell and wish I could suggest something to help.

[Honeybun]

Well ED took 6 hours of my life with no answer in the end, no medication...big nuffin. Which is very frustrating.

They did chest xrays, bloods etc and nothing showed. I am happy my levels did not drop btw, but did want something to explain not being able to breath. They just did the minimum and said see your haemo or come back if it happens again. In other words go away, your not going to have a coronary etc today, fobbed off to someone else, and hopefully I am not on duty should you need to come back lol.

Even though I turned up with shortness of breath, flushed, high heart rate, sweating etc, from walking a block to the hospital. I was triaged at 4, and waited two hours before seeing someone. Off course I was breathing normally two hours later because I was just sitting down. The reason I was there was with minimum exertion I could not breath. Perhaps they should have got me to walk the ED a couple of times to make a proper assessment.

So lucky I have an appointment next week with the haemo, which I will raise those issues Chirley.

Chirley I did have a body scan which showed active bone marrow in my neck shoulders, knees, left side ribs etc before I was dx. Perhaps you should get a scan (if you haven't already) and see where there are some problems. At least you know it is not in your head, and the reason I pushed for a BMB which got the dx. From that I had additional scans ordered, such as ultrasounds. My shoulders have bursitis, which I get the cortosone injections for, which help for a couple months then you have to have top ups. The neck is relieved by the epidural for a while but like the cortosone wears off. The reason for the neck pain and spasticity has not been revealed. I do need to get the MRI done. The opthamologist thought it was migraines that caused my blurred vision, although only once did I have a headache and I don't get migraines. He did find a cataract (at my age ) and said that would need to be operated on in the next couple of years. As for the hands, lip, eye twitch etc, I am thinking it is a vitamin deficiency, I know I am very low on D, which can also point to MS. I used to think it was poor circulation and that it was cold, but I have got cramps in my feet in a hot shower. I think I will ask the haemo to run some vitamin tests.

Chirley if you get the same sort of pain as I do, it is not in your head, although docs can think it is. Just keep pushing for tests, or change docs like I did.

Feel free to PM me Chirley if you want to ask anything. Hopefully I will be useful for once in these forums, instead of just asking the questions (yay)

Off to google caeruloplasmin.

Honey

[Greg H]

Originally Posted by Honey

The opthamologist thought it was migraines that caused my blurred vision, although only once did I have a headache and I don't get migraines.
...
As for the hands, lip, eye twitch etc, I am thinking it is a vitamin deficiency, I know I am very low on D, which can also point to MS. I used to think it was poor circulation and that it was cold, but I have got cramps in my feet in a hot shower. I think I will ask the haemo to run some vitamin tests.

Hi Honey!

Sorry to hear about your shortness of breath.

Two thoughts on the items above:

1. I have occasional ocular migraines which cause blurred vision (mostly in the periphery) but do not result in headache. I cannot use the computer or read when these happen; they typically last 15 minutes or so. My mother and daughter have them as well. And my wife had her first one a couple of months ago.

2. My wife has pernicious anemia -- an inability for her stomach tissue to absorb B12 -- and has had it for years. She injects herself with B12 twice a month. When her B12 is getting low, she has numbness and tingling in feet and hands. So, you might want to look at B12 as well as D.

Take Care!

Greg

[Honeybun]

wooohooo and your in Australia too Cheryl

Greg you are spot on with both. I do/did have pernacious anaemia but my levels are fine and I have injections too. The ocular migraines is what they say I have but no one has given me a reason for the cause.

Honey

[Whizbang]

I've very often, in the past year gotten tetany (fingers locking in a clenched position), it happens mostly when I would be working on the deck and hammering... I chalked it up to not being a spring chicken any more...

On a side note I've been taking B-complex vitamins since I was 19, my body would ask for them I guess... I would always have more energy when I would take them...

[Honeybun]

Yup Whiz I have hit my use by date. More time up on the hoist getting the chassis tuned, but no matter how many grease and lubes there is still an annoying rattle somewhere they can't find

On another note, I went to the local docs again tonight and yay I do have a diagnosis (not MDS related), some medication and a week in bed.

(happy) Honey

[riccd2001]

Originally Posted by Whizbang

I've very often, in the past year gotten tetany (fingers locking in a clenched position), it happens mostly when I would be working on the deck and hammering... I chalked it up to not being a spring chicken any more...

If potassium levels are off, relief for this in my case was 1-2 capsules (600mg)per day of OTC APO-K.

[evansmom]

Was just going to ask what your potassium is running. Symptoms sound like low potassium.

[Whizbang]

They appeared to be fine...

Component	Standard Range	6/19	7/18	7/30	8/22
POTASSIUM	3.5-5.1 mmol/L	 4.3	 4.5	 4.1	 4.3

But it did happen May / June before any blood work...