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[gu1928]

Hi
I am 38 year old female with 3 kids
So far I am undiagnosed
Undiagnosed for 3 years
First symptom was thoracic chest pain
Followed by sciatic left leg pain whith negative emg negative mri
Few months later chiro and physio said my gait is not right
Atrophy developed in left leg
Hip mra negative
A year later severe back ache followed by same symptoms on right leg
Neuro observed hyperreflexia
In both knew tendons
Left being worst
Both legs clinically weak
Repeat emg with no findings
Twitching,pulling pain comes and goes all over body
Feels like someone pulled a muscle for a second and back to normal
Sad to hear you have no answers yet

I had spinal tap last week
Waiting for results.will share once I get them

I feel like a tight band in my chest
At one level in the thoracic spine
It's painful
I have pain in sacroiliac joints
And a burning pain that goes down my leg from buttock to the calf
Tried pain management SI joint and lumbar spine steroid injections
Nothing helped even for a day

I have a gait disorder too
The physiotherapist and chiropractor confirmed
But left hip mri showed no tear or deformity.the brain cervical lumbar and thoracic spine show no signs to cause these symptoms
One neuro said progressive myelopathy ..other said I don't know what is
I was deficient in B12 and D3 not anymore
Also I had red rashes on my back which looked nothing like lyme rash or varicella rashes without any fever
They were random that came on my knees and back and went away by themselves
But they coincided with the pain
Clueless don't know what to do
And it's progressing the pain twiching and I feel more and more disable
The neurologist says we will keep following up ...hopeless

Gul

[gu1928]

Also I get occasional headaches too with parasthesias and one of my eyes gets sore and red

[Scott1]

Hi,

I'm sorry you are having such a hard time. Your problem may not be MS.

The rashes on your body and the sore eyes may be very telling signs. If I was you, I would be asking for blood and urine tests that look for infection. You obviously have something wrong. Many infections can get into your joints, under your skin and throughout your system.
I note you said the SI joint was injected but did they inject the periformis? Sometimes they go for the joint that's painful rather then underlying cause hence no improvement.

Regards,

[gu1928]

Thank you Scott for writing to me.I was not given steroid injection for piriformis..
I visited a neuro today for second opinion
He said my diagnosis is myelopathy but he is not sure where it is coming from
I had spinal tap last Friday.
I called in my original neuro office
Nurse said test for oliogoconal banding and lyme tests not in yet

How long does csf panel for MS takes?
More than a week?

Any answers will be appreciated

[Scott1]

Hi,

How long is dependent on who is doing the test?

If he thinks myelopathy then he might think MS is involved but that should be after excluding any underlying cause of inflammation. That would include infections (mycoplasma, rickettsia, etc) or poor oxygenation from inadequate vasodilation causing ischemia.

If you are struggling with ischemic conditions ( check your uric acid level for loss of purines) then that can cause the periformis to lock up. A cortisone injection into the membrane over the muscle would help that.

Regards,

[lyndacarol]

I was deficient in B12 and D3 not anymore

Would you share your actual D3 test numbers--the first one that identified the deficiency and the most recent one which indicates that you are no longer deficient?

In January my D3 test result was 24 ng/mL (frankly deficient). The organization GrassrootsHealth ( http://www.grassrootshealth.net ) recommends that the vitamin D level should be at least 40 ng/mL. Some neurologists recommend that patients with neurological symptoms should maintain a vitamin D level between 80-100 ng/mL.

[gu1928]

Thanks Scott for the information
Are there more causes of inflammation like mycoplasma ricketsia,..? Or is there a link where I can find this list..
I want to show it to neuro and ask him if he has ruled this out...he is suggesting me to go to mayo clinic in Minnesota..I want him to do all these tests on me.he also sent me to university of miami and they are suggesting angiography of the spinal cord.the neuro there thinks there is a remote possibility that I might have avm where I have thoracic pain..and that might be causing these issues
Thanks again
Gul

[gu1928]

Hi lynda
My D3 was 8 ..the first time I was found deficient..
Second time it was 14 ..now it has come up to 46
Thanks
Gul