Undiagnosed and scared

[Kelly73]

Hi,

8 months ago, I started to experience coital headaches. As well as not have been feeling very well, I was feeling like my muscles were waisting away, weak, I was waking up with dull headaches and feelings of vertigo and pain behind my eye. My doctor ordered a MRI, looking for a cerebral leakage. There was no leakage but found white matter change on my brain. I was referred to a neurologist, who did not think it was much to worry about, but sent me for a more in debth MRI. After this she thought it did look more like MS and asked me to have an MRI on my spine, an evoked potentials test and lumbar puncture. My spine was clear, the evoked potentials was good, but he lumbar puncture showed high white blood cell count. Apon speaking to her collegues and taking my scans to MS specialists, they decided my scans did not fit the "MS patern". I then proceded to have every blood test to rule out all sorts of diseases like HIV, led heavy metals, different bugs I could have gotten overseas etc. Nothing has shown positive. I get the feeling they put my ms symptoms down to being stressed, and maybe knowing someone with ms and imagining things are worse than what they are etc. I am worried they have gotten it wrong. My legs feel like they are getting weaker, I have trouble holding my arms up for any length of time. I have bad back pain. I still feel funny things happening in my head. I forget things and feel like I am in a fog. I dont think they will ever diagnose me with MS until I loose the ability to use a limb completely. Should I keep waiting? What should I do? Am I imagining it? Can you have eye pain and blurred vision without optic Neuritis ? Would I have back pain without lesions in my spine? Do you have funny feelings in your head with ms? So confused. (thoughout these searches for what is wrong, they have also found fatty liver, sleep apnea, hiatus hernia, and bad reflux)

[lyndacarol]

8 months ago, I started to experience coital headaches. As well as not have been feeling very well, I was feeling like my muscles were waisting away, weak, I was waking up with dull headaches and feelings of vertigo and pain behind my eye. My doctor ordered a MRI, looking for a cerebral leakage. There was no leakage but found white matter change on my brain. I was referred to a neurologist, who did not think it was much to worry about, but sent me for a more in debth MRI. After this she thought it did look more like MS and asked me to have an MRI on my spine, an evoked potentials test and lumbar puncture. My spine was clear, the evoked potentials was good, but he lumbar puncture showed high white blood cell count. Apon speaking to her collegues and taking my scans to MS specialists, they decided my scans did not fit the "MS patern". I then proceded to have every blood test to rule out all sorts of diseases like HIV, led heavy metals, different bugs I could have gotten overseas etc. Nothing has shown positive. I get the feeling they put my ms symptoms down to being stressed, and maybe knowing someone with ms and imagining things are worse than what they are etc. I am worried they have gotten it wrong. My legs feel like they are getting weaker, I have trouble holding my arms up for any length of time. I have bad back pain. I still feel funny things happening in my head. I forget things and feel like I am in a fog. I dont think they will ever diagnose me with MS until I loose the ability to use a limb completely. Should I keep waiting? What should I do? Am I imagining it? Can you have eye pain and blurred vision without optic Neuritis ? Would I have back pain without lesions in my spine? Do you have funny feelings in your head with ms? So confused. (thoughout these searches for what is wrong, they have also found fatty liver, sleep apnea, hiatus hernia, and bad reflux)

Welcome to ThisIsMS, Kelly73.

Your symptoms are nonspecific and are common to many conditions. In the "every blood test to rule out all sorts of diseases"that your GP ordered, I assume that nutrient testing was done. (I also assume you requested your own copy of any test results.)

Since over 1/2 of the world's population is deficient in vitamin D and many experts now recommend that the 25-hydroxyvitamin D test be conducted as routinely as blood pressure, glucose, and cholesterol testing, please share the actual test result numbers with us.

The fact that you have fatty liver disease would be implicated in a vitamin D deficiency/insufficiency, since liver function is involved in converting vitamin D into 25-(OH)D (a.k.a. 25-hydroxyvitamin D) in the pathway to make D available to the body.

Neurological symptoms are often the first symptoms of vitamin B12 deficiency. Initial testing for this deficiency should include 4 tests: serum B12 test, RBC folate test, serum homocysteine test, and methylmalonic acid test. I hope you had these test results, too. (By the way, lab reference ranges for testing vitamin D and B12 are considered by many to be set too low.)

It is a good idea to ask for other nutrient testing, too – magnesium, zinc.

To your questions: Should I keep waiting? What should I do? Am I imagining it? … It is my opinion you are NOT imagining it. I suggest that you see your GP and request this nutrient testing, if it has not already been done.

[Kelly73]

Thankyou, and no I do not have copies of any of the blood tests that have been done. The doctors have barely mentioned what they are testing for, its only me probing and asking that they give up any information... all I get is ... we know something is going on , we just dont know what...... and... alot of the times if you leave things like this alone they go away.... I know I was low in Vitamin D and am now taking suppliments. I have also just recently started taking a Vitamin B complex suppliment. I have another lumbar puncture and MRI and neurologist appointment in the next 2 weeks, I will ask about these tests when I go. Thankyou so much.

[lyndacarol]

Thankyou, and no I do not have copies of any of the blood tests that have been done. The doctors have barely mentioned what they are testing for, its only me probing and asking that they give up any information... all I get is ... we know something is going on , we just dont know what...... and... alot of the times if you leave things like this alone they go away.... I know I was low in Vitamin D and am now taking suppliments. I have also just recently started taking a Vitamin B complex suppliment. I have another lumbar puncture and MRI and neurologist appointment in the next 2 weeks, I will ask about these tests when I go. Thankyou so much.

I suggest that you call your doctor's office and request that they send you physical copies of your test results. (Keep them in a file at home so you can refer to them easily.)

I am especially interested in the vitamin D test result. What is the dose of vitamin D you are taking? If you tested low ONCE, your doctor should continue to monitor your D level regularly with a repeat test every year (Every six months would be better.)

Ideally, your vitamin B12 level was tested before you began taking the B Complex. If you get these test results from your doctor, please share the numbers with us. If you have a vitamin B12 deficiency, there is not enough B12 in B Complex to correct a deficiency. The folic acid in B Complex and in today's food fortification can mask a B12 deficiency (allowing a B12 deficiency to continue and possibly allowing its neurological symptoms to become permanent).

Asking your neurologist (when you see her) to order these tests is a good idea; but a better idea (in my opinion) is to call your GP and request a lab order for them now, if they have not already been done.