Sporadic Blindness???

Sporadic blindness is what I have been facing lately with all my crazy symptoms. I have lost my vision many times over the past month. My neurologist wants to wait until I get the lumbar puncture (LP) done before prescribing anything or to see how to proceed. She is waiting for the LP because my protein has been high on my blood tests so she is checking for multiple sclerosis (MS), ebstein barr virus (EBV) levels and many other things. Currently I am still waiting for the hospital to call to schedule the LP.

As far as the blindness goes, this is what happens, first everything looks extremely shaky (it looks shaky but I am not shaking – so it’s just the vision appearing to be very shaky like everything is moving in a earthquake) then my vision just goes black … nothing but blackness. It has lasted several minutes then the shaky vision returns and then my vision is back to normal.

I have also lost vision in my left eye but it is simply completely blurry where I cannot make anything out but I can see light.

Before I started losing my vision I did experience several episodes where it seemed everything was moving and I was in a earthquake but 100x fold. Much worse then vertigo. My vision was very erratic as if someone was shaky me violently. Not sure if this was a prelude to the blindness which resulted in blackness. It was a very similar feeling I felt before going blind.

I went to a opthamologist but he said the pressure in my eyes were fine and that my symptoms were either caused by my seizures (I have absent seizures) or it’s neurological and that I should speak with my neurologist. Others in various facebook groups suggested I see a neuro-opthamologist.

My question is has anyone experienced any of this? If so please comment or message me. Thank you!

Update 9/2017: Opthmalogist stated sporadic blindness must be neurological. My neurologist said it could be due to seizures or chiari 1 malformation and/or my syrinx.

 

 

 

Cerebral Spinal Fluid (CSF) from Lumbar Puncture (LP) & My Results? WTF!

As I said in a previous post, I was in the hospital last year from April 21st to July 3rd 2016 for a chiari 1 malformation decompression surgery. All went well during the surgery they stated that once they tested my flow within the brain after cutting the hole in my head that the CSF fluid was not flowing properly and that they had to remove some webbing so they did. However, after surgery I came down with an infection which they could not discover what it was then shortly later I also had chemical meningitis from the dura patch. (I will write a separate blog post on my experience and the craziness that ensued later) However because of the infection and the chemical meningitis they were taking CSF fluid via lumbar puncture every 3-7 days. The last two has raised some concerns for me.

On June 6th 2016 my CSF LP Results. Values in Brackets [ ] are normal values. Keep in mind I still had a touch of chemical meningitis at this point … which are lower than previous values from other CSF LP results. Also, keep in mind my CSF glucose can be low because I am hypoglycemic. I am just posting those that are a concern for me which raises questions … big ones:

• Appearance CSF: Slightly Cloudy * ABN * (due to meningitis)
• RBC CSF [0-1 /mm3]: 0
• WBC CSF [0-5 /mm3]: 228 *HI*
• Glucose CSF [40-70 mg/dL]: 30 *LO*
• Protein CSF [12-60 mg/dL]: 92 *HI*

On June 23rd 2016 my CSF LP Results. At this point my chemical meningitis has resolved but compared to the results above they show something else is going on which I still have high values or even higher than the previous results. I was released from the hospital on July 3rd 2016. So I was released with the following values. On July 1st I had another surgery for chiari 1 malformation to repair the dura due to a CSF leak also. Maybe this could account for the high values but they did not do another LP so I am not sure but I doubt it is due to that.

• Appearance CSF: Clear (meningitis resolved)
• RBC CSF [0-1 /mm3]: 16 *HI*
• WBC CSF [0-5 /mm3]: 502 *HI*
• Glucose CSF [40-70 mg/dL]: 25 *LO*
• Protein CSF [12-60 mg/dL]: 145 *HI*

So the questions are: Is this due to CEBV? Or is it due to something else?

With all my crazy symptoms which may or may not be related to CEBV or MS or Lupus … I seriously need a new LP to rule in/out other conditions that may be coming into play.

Has anyone else had similar results and if Yes … is it just CEBV or something else? Thank you and big hugs to all.

Also, if you are seeking information on CSF results click on the tab above for “Articles” it has many resources for LP Results. Good Luck!

UPDATE: From what I understand from various MS groups and resources is that you can have the above to due MS … with regards to EBV is still questionable. Resources below:

1. http://www.healthline.com/health/csf-total-protein#overview1
2. http://www.healthline.com/health/csf-cell-count#understanding-your-results7

I will update with a new post once I have completed a new LP to rule in/out MS and CEBV effecting the CSF results.

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Actual Resources and Page Content:

1. http://www.healthline.com/health/csf-total-protein#overview1

What Is a Cerebrospinal Fluid Protein Test?
Cerebrospinal fluid (CSF) is a clear bodily fluid that cushions and protects your brain and spinal cord. A CSF protein test involves taking a fluid sample from your spinal column using a needle. This procedure is known as a lumbar puncture or spinal tap.

The CSF protein test determines if there’s too much or too little protein in your CSF. Test results that indicate your protein level is higher or lower than normal can help your doctor diagnose a range of conditions. Another use for a CSF protein test is to check the amount of pressure in your spinal fluid.

USES

Why Do I Need a Cerebrospinal Fluid Protein Test?
Your doctor will order a CSF protein test if they suspect you have a central nervous system disease such as multiple sclerosis (MS) or an infectious condition such as meningitis. CSF protein tests are also helpful when looking for signs of injury, bleeding in the spinal fluid, or vasculitis.

High levels of protein in your CSF can indicate:

aseptic meningitis
bacterial meningitis
brain abscess
brain tumor
cerebral hemorrhage
epilepsy
MS
neurosyphilis
Acute alcoholism is another possible cause of high protein levels.

Low levels of protein in your CSF could mean your body is leaking cerebrospinal fluid. This could be due to a traumatic injury such as head trauma or a stabbing.

 

2. http://www.healthline.com/health/csf-cell-count#understanding-your-results7

Understanding your test results
CSF cell count
Normally, there are no RBCs in the cerebrospinal fluid, and there should be no more than five WBCs per cubic millimeter of CSF.

If your fluid contains RBCs, this may indicate bleeding. It is also possible that you had a traumatic tap (blood leaked into the fluid sample during collection). If you had more than one vial collected during your lumbar puncture, these will be checked for RBC to test the bleeding diagnosis.

A high WBC count may indicate infection, inflammation, or bleeding. The associated conditions may include:

intracranial hemorrhage (bleeding in the skull)
meningitis
tumor
abscess
multiple sclerosis
stroke
Differential cell count
Normal results mean that normal cell counts were found, and the counts and ratios of the various types of white blood cells were within normal range. No foreign cells were found.

Increases, however slight, in your WBC counts may indicate certain kinds of infection or disease. For example, a viral or fungal infection may cause you to have more lymphocytes.

The presence of abnormal cells may indicate cancerous tumors.

FOLLOW-UP

Post-test follow-up
If abnormalities are found by the CSF cell count and differential cell count, further tests may be needed. Appropriate treatment will be provided based on the condition that is found to be causing your symptoms.

If test results suggest bacterial meningitis, it is a medical emergency. Prompt treatment is essential. The doctor may put you on broad-spectrum antibiotics while conducting additional tests to find the exact cause of the infection.

CEBV and The MS Hug … Ribs Squeezing Pain

The MS Hug, not just for MS (Multiple Sclerosis). 

Do you sometimes feel as though a gorilla is giving you a huge hug around your rib cage and the result is PAIN! Yes, that is the MS Hug. You may experience this pain around your entire rib cage or just part of your rib cage.

Here is an excerpt from About.com on MS Hugs:
http://ms.about.com/od/signssymptoms/a/ms_hug_pain.htm

How Common is the “MS Hug?”

This is hard to say. Up to 75% of people with MS will experience pain as a symptom, but statistics on the MS hug are difficult to find.

What Causes the “MS Hug?”

It is caused by a lesion on the spinal cord and is technically classified as a neuropathic pain called a “paresthesia,” which refers to any abormal sensation. The sensation itself is the result of tiny muscles between each rib (intercostal muscles) going into spasm. These muscles have the job of holding our ribs together, as well as keeping them flexible and aiding in movement, like forced expiration.

What Does It Feel Like?

Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be:

• As low as the waist or as high as the chest; rarely it can be felt as high as the shoulders and neck
• Focused in one small area (usually on one side or in the back) or go all the way around the torso
• Worse when fatigued or stressed
• Present in “waves” lasting seconds, minutes or hours or can be steady for longer periods of time
• Described as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure

How Severe Can It Get?

Some people experience difficulty breathing or painful breathing, so severe that it is often perceived as a heart attack or panic attack.

Hope you find this helpful. I was experiencing the MS Hug for years so I thought you may find this helpful if you are experiencing the same pains.

Side notes: you may still experience MS Hugs without having MS. It’s called Costochondritis.

How to Get Relief from the MS Hug aka Costochondritis!

The best way I have found to  calm it down is with ice packs (I prefer the gel kind) on the breastbone and upper back following the spine downwards. This is the best way I have discovered to relieve it quicker. You can also take one or two of your muscle relaxants such as; gabapentin, valium, flexeril, robaxin … whatever meds you have to assist the process but ice packs is a given with it or you will be waiting a lot longer for it to subside.

Good Luck and Big Hugs! Stay Strong!

UPDATE! As of 2017, I recently was made aware that fibromyalgia can also cause costochondritis … just FYI.