Lumbar Puncture (LP) … Still Waiting and Still In Massive Pain!

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I called my neurologist last week hoping for some form of relief from all this pain and fatigue I am in … I am still bedridden. I can only stay out of bed for tops a half hour at a time then back to bed I go. I need to get out of bed to assist my son with daily activities (he has cerebral palsy) so staying in bed is not an option. My oldest son does help me a lot with my youngest so that is a great relief.

I know I have not written a post for a while, I am still down and out. Right now my neurologist wants to wait until the LP is done to see why my protein is so high. I do have some proteins that are high and/or borderline but a few years ago I had other proteins that were all over the place high/normal/low so she is very curious and is motivated in seeing what is causing it hence why she wants to wait for the results of the LP.

My neurologist does not want to prescribe anything for me until she gets the results from the LP but I am still waiting for the hospital to call to schedule it. I see my neurologist again around July 20th.

My neurologist said she was going to test my CSF for EBV, MS and others things that may be causing the high protein. Years ago when I saw a hemotologist and all my proteins were out of whack he said it was due to inflammation and did not refer me to another doctor or for further testing.

The protein currently high is my alpha-1-globulins and my alpha-2-globulins and beta globulins are at the high end of normal (1 number higher I’d be high). These proteins means the Protein Electrophoresis is abnormal primarily due to the alpha-1-globulins. My sed rate (ERS) is also high. My carbon dioxide level is low. Calculated Osmolality is also low. (In 2012 I had many protein levels high/low which is why my doc wants to look further into a cause)

So your guess is as good as mine.

Here is a document I found on globulins as a reference:

Just in case the link is not working here is the info:

GLOBULINS

Basic science

Globulins are a group of proteins within the blood. They are produced by the liver and the immune system. Albumin makes up more than half of the total protein within the blood, and globulins make up the remainder. Globulins have multiple different functions; the group includes immunoglobulins, enzymes, carrier proteins and
complement.

There are four groups of globulins. Serum protein electrophoresis is the test used to distinguish one from another and establish levels of each within the bloodstream.

Alpha 1 globulins

  • Mainly alpha-1 antitrypsin.

Alpha 2 globulins
– Alpha 2 macroglobulin.
– Haptoglobin.

Beta globulins
Transferrin.
Complement components C3, C4, C5.
Gamma globulins
Mostly immunoglobulins (antibodies):
IgG: majority of the immunoglobulin component. Many antibodies to bacteria and viruses are IgG.
IgE: involved in allergic response. Triggers histamine release. Also protects against parasites.
IgM: largest antibodies and first type produced in response to infection.
IgD: exists in very small quantities in blood. Function not very well understood.
IgA: found in mucous membranes, blood, saliva and tears. Protect body surfaces which are exposed
to foreign substances.
Tests and their clinical significance
Globulin level
Total protein is routinely done as part of the LFTs. Subtracting albumin from serum protein leaves the total globulin
level.
Decreased total globulin level:
Malnutrition (due to decreased synthesis).
Congenital immune deficiency (due to decreased synthesis).
Nephrotic syndrome (due to protein loss through the kidneys).
Increased albumin level causing decreased globulin fraction – eg, acute dehydration.
Page 1 of 5

Increased total globulin level:
Acute infection.
Chronic inflammatory disease – eg, rheumatoid arthritis, systemic lupus erythematosus
(SLE).
Multiple myeloma.
Waldenström’s macroglobulinaemia.
Hyperimmunisation.
Low albumin level causing increased globulin fraction – cirrhosis, nephrotic syndrome.
Globulin ratio may also be used, which is the ratio of albumin to globulin, and is usually between 1.7-2.2, ie there
is normally around twice as much albumin as globulin.
Serum protein electrophoresis (SPEP)
Electrophoresis divides serum proteins in order to determine if any group of protein is present in abnormal levels.
Serum is exposed to an electrical current which causes the different proteins to migrate in bands. It thus divides
globulins into the alpha-1, alpha-2, beta and gamma fractions. It is more sensitive than the quantitative
immunoglobulin tests (below).
Alpha-1 abnormalities are usually due to alpha-1 antitrypsin changes.
Decreased levels in congenital alpha-1-antitrypsin deficiency.
Increases are found in acute inflammatory disorders (it is an acute phase reactant).
Alpha-2 abnormalities mainly involve alpha-2 macroglobulin and haptoglobin.
Alpha-2 macroglobulin rises in nephrotic syndrome.
Haptoglobin levels increase in stress, infection, inflammation and tissue necrosis. Levels decrease
with haemolytic reactions.
The beta fraction consists mostly of transferrin. This is elevated in severe iron deficiency.
Where the gamma fraction is increased, it can then be further established whether this is a narrow spike-like
increase of a single immunoglobulin (a monoclonal rise) or a broader-based increase (polyclonal rise.)
Monoclonal rises are then further evaluated with immunoelectrophoresis or immunofixation electrophoresis (see
below.) Monoclonal spikes are more likely to have a malignant cause, with multiple myeloma being the most
common of these. However, the most common cause of a monoclonal rise is monoclonal gammopathy of
uncertain significance (MGUS) which is usually a benign condition. Abnormal immunoglobulins produced in
excess monoclonally are also known as paraproteins.
To establish a diagnosis of myeloma or Waldenström’s macroglobulinaemia, urine electrophoresis is also carried
out to look for monoclonal immunoglobulin bands within urine. The finding of Bence Jones’ protein is suggestive
of myeloma or Waldenström’s macroglobulinaemia.
SPEP can be further used to monitor response to treatment in myeloma.
Immunoelectrophoresis or immunofixation electrophoresis
Immunoelectrophoresis or immunofixation electrophoresis is usually performed when SPEP has found the
presence of increased gammaglobulin levels in order to further establish the nature of the abnormality. It identifies
the type of gammaglobulin. This is commonly used in the diagnosis of myeloma.
Quantitative immunoglobulin levels
These test the levels of the three major immunoglobulin groups (IgG, IgMand IgA).
Page 2 of 5

Causes of low immunoglobulin levels (hypogammaglobulinaemia)
Congenital immunodeficiency syndromes.
Conditions causing excess loss of immunoglobulins:
Sepsis
Nephrotic syndrome
Burns
Protein-losing enteropathy
Conditions causing less production of immunoglobulins:
Malnutrition
Alcoholism
Drugs – phenytoin, carbamazepine, immunosuppressants
Haematological malignancies – multiple myeloma, chronic lymphocytic leukaemia (CLL),
lymphoma
Rheumatoid arthritis
SLE
Viral causes – cytomegalovirus (CMV), human immunodeficiency virus (HIV), Epstein-Barr
virus (EBV), rubella
Causes of raised immunoglobulin levels
Electrophoresis will establish if these are polyclonal or monoclonal rises. The most common rise in
immunoglobulin levels is polyclonal, and due to immune system activity caused by infection or autoimmune
diseases.
Polyclonal rises in immunoglobulin levels:
Infections
Autoimmune connective tissue diseases – rheumatoid arthritis, SLE, scleroderma
Chronic active autoimmune hepatitis (IgG)
Primary biliary cirrhosis (IgM)
Chronic liver disease
Monoclonal rises in one class of immunoglobulin level:
Multiple myeloma (IgG or IgAusually)
MGUS. The most common cause of monoclonal rise, and usually a benign condition
CLL
Non-Hodgkin’s lymphoma
Waldenström’s macroglobulinaemia (IgM)
Primary systemic amyloidosis
Allergen-specific IgE tests
Blood tests can be done which measure the amount of IgE antibodies which have been produced in response to
specific allergens. These are usually done by the radioallergosorbent testing (RAST) or enzyme-linked
immunosorbent assay (ELISA) techniques. Blood allergy tests are more expensive and less sensitive than skin
prick testing, but can be useful in certain situations – for example, when there is a risk of anaphylaxis, or severe
skin rashes, or when the patient needs to continue taking antihistamines. Hundreds of different allergens can be
tested for in this way.
Common tests done in general practice
Common reasons GPs might order immunoglobulin tests or SPEP might include:
Excluding myeloma when other blood tests such as FBC or ESR are abnormal.
Serology tests for allergies.
Checking for immunodeficiency in patients with recurrent infections.
Checking responses to immunisations, such as hepatitis B or rubella.
Checking for immunity to infections, such as chickenpox in pregnant women.
Screening for coeliac disease.
Looking for autoimmune diseases.
Establishing the cause of abnormal protein levels found on LFTs. (Most often a raised globulin fraction
will be a polyclonal rise due to infection or inflammation.)
Page 3 of 5

Investigating the cause of a raised globulin level
Araised globulin level may be a relatively common coincidental finding. The work-up to establish the cause
involves history, examination and further investigations to determine which of the conditions listed above may be
causing the abnormality. This work-up would include:
History
Bone pain (myeloma).
Night sweats (lymphoproliferative disorders).
Weight loss (cancers).
Breathlessness, fatigue (anaemia).
Unexplained bleeding (lymphoproliferative disorders).
Symptoms of carpal tunnel syndrome (amyloidosis).
Fever (infections).
Joint pains (connective tissue diseases).
Patients with MGUS are asymptomatic by definition.
Examination
Temperature (infections, sepsis).
Arthropathy (connective tissue disorders).
Lymphadenopathy, hepatosplenomegaly (lymphoproliferative disorders).
Anaemia (lymphoproliferative disorders).
Signs of heart failure (amyloidosis).
Macroglossia (amyloidosis).
Signs of carpal tunnel syndrome (amyloidosis).
Investigations
FBC (anaemia, lymphocytosis, lymphopenia, thrombocytopenia).
ESR (raised in myeloma, sepsis, cancers).
Renal function (impaired renal function).
Calcium (hypercalcaemia in myeloma).
LFTs (hepatic diseases).
Serum protein electrophoresis (monoclonal vs polyclonal rise) and immunofixation electrophoresis
(defining immunoglobulin class in monoclonal rises).
Urine electrophoresis (Bence Jones’ protein).
X-rays if areas of bone pain.
Further investigations dependent on results of above, and where relevant performed in secondary
care.
Therapeutic uses of globulins
Some of the therapeutic uses of immunoglobulins:
Haemolytic disease of the newborn. IV immunoglobulin is given to the mother in pregnancy to prevent
antibody production.
Immunodeficiency diseases.
Guillain-Barré syndrome. IV immunoglobulin counteracts antibodies and slows progression.
Snake and spider bites – used with antivenom to help the immune system respond.
Kawasaki disease. IV immunoglobulin helps prevent coronary aneurysms.
Immune thrombocytopenic purpura (ITP).
Immediate short-term protection against hepatitis A, measles, polio, rubella.
Specific immunoglobulin preparations for hepatitis B, rabies, and varicella-zoster give short-term
immediate protection to a person exposed.
(See also the separate article Immunoglobulins – Normal and Specific.)
Page 4 of 5

Further reading & references
Loh RK, Vale S, McLean-TookeA;Quantitative serum immunoglobulin tests.Aust Fam Physician. 2013Apr;42(4):195-8.
Bird JM; Investigating an incidental finding of a paraprotein. BMJ. 2012 May4;344:e3033. doi: 10.1136/bmj.e3033.
Immunoglobulin; PublicHealth England
Busher JT; SerumAlbumin andGlobulin
Serum globulin electrophoresis; MedlinePlus
Monoclonal gammopathyof undetermined significance (MGUS); Melbourne Haematology
Immunoelectrophoresis – blood; MedlinePlus
Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical
conditions. EMIS has used all reasonable care in compiling the information but makes no warranty as to its
accuracy. Consult a doctor or other healthcare professional for diagnosis and treatment of medical conditions.
For details see our conditions.
OriginalAuthor:
Dr MaryHarding
Current Version:
Dr MaryHarding
Peer Reviewer:
Dr HayleyWillacy

 

 

Torticollis … just one more symptom

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Years ago, I woke up and couldn’t turn my head and the pain ran from my neck into my head. I took various prescription medicines to no avail but nothing helped. After several days of being in pain I finally decided to go to the hospital. They ran tests for meningitis and did a CT scan. When the doctor returned to my room he said it was the worse case of torticollis he saw.

The doctor then prescribed robaxin 500mg 3x a day, naproxen 400mg every 6-8 hrs and percocets every 4 hours and was told to put ice on it for the first few days and heat thereafter. Remarkably it helped … Thank You God! Because it was the worst case the doctor ever saw he asked if I needed 4-6 weeks off from work to recover but I declined because I am a stay at home mom so what do we do … the best we can for our kids and keep moving.

The reason I am writing this is to inform you of torticollis. I am not sure why this has happened to me or what condition it is related to but wanted to give everyone the heads up. It was so severe I couldn’t turn or lift my chin up. I love my coffee and I resorted to using a straw … that was literally the straw that broke the camels back. All I tasted was a melting, burnt straw … yuck! Plus I am a talker so the torticollis prevented me from doing as much talking and laughing was painful.

After the first initial bout of torticollis every winter thereafter it would flare up again and again and again. It continued until I was placed on robaxin 500mg 3x daily then it stopped.

The last time I went to the hospital the torticollis was so severe when I swallowed I’d hear a thud and it would hurt so bad. Once again they checked me for meningitis but it came up negative and once again torticollis was confirmed. When I had problems swallowing and breathing it did scare me. I was afraid that it would get so severe it block my airway but one neurologist said no that could not happen which I still am in denial for that because of the way it felt and I trust how I feel over what a doctor says.

Big hugs to all. If you have questions write them in the comments below.

 

 

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

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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.


 

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.

MS Hug or Kidney Problems? That is the Question!

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Well this past week I was having massive pain in my lower, left back where the rib cage is. Mind you, I have had the ms hug way too many times to count but holy moly it was bad. Nothing seemed to work as quickly as previous times.

The pain started last Wednesday but was mild and bearable so huh no problem. As the days past the pain started to intensify. However, I have so many body pains I tend to ignore the smaller things so I just happened to overlook the pain until Friday when I noticed it was inflaming more.

By Saturday, I didn’t want to move I was in so much pain. It was so bad, I was actually considering going to the ER and I never do that unless I am in dire straights. Because if I went every time something was wrong I’d never leave … sad but true. So because I was unsure what was causing the pain I began drinking cranberry juice and cherry juice for the kidney which normally takes the pain away or minimizes the pain within hours of drinking but I didn’t notice a difference. Then it hit me, it may be the ms hug.

The ms hug can literally hit anywhere in the rib area. It can be on one side, or a lower part of the rib cage or the whole rib cage. Believe me the whole rib cage is excruciating. So with this in mind I started placing ice packs on my breastbone and upper spine. By placing the ice packs on these areas it helps calm down the ms hug greatly compared to just meds alone. Think Of the breastbone and the upper spine like piano keys when it spasms it effects areas of the rib cage that is why placing ice packs on those areas help reduce it quicker … it helps calm it down.

I first laid down and place the ice packs on those areas for about an hour and a half during the day which isn’t long but I have a family so that is all the time I had. Later that night when I laid back down I placed ice backs on my breastbone, upper spine and on the area that hurt just in case it wasn’t the ms hug. Also, because I was unsure what the pain was coming from I did continue to drink the cranberry and cherry juice throughout the weekend.

You may be asking yourself how does cranberry and cherry juice help the kidneys. The cranberry juice is what cleans and rids the toxins from the kidneys. The cherry juice works in a similar manner but with regards to the liver. That is why I do both to help them stay healthy to avoid future complications with them. Mind you I have been doing this for over 20 years since I was 16 years old … that is when my kidney problems started and presented with pain. Also, with me having chronic EBV it can effect your liver and causes it to enlarge so a ounce of prevention is a pound of cure.

By Sunday morning, my kidney or the ms hug was a lot better than Saturday. On Saturday I was in so much pain, I felt as though I was going to collapse, my legs felt weak and wobbly and I had the shakes very badly along with the kidney / ms hug. But by Sunday the pain was greatly reduced but still very painful but bearable … Amen!

Today is Monday and I did the same routine yesterday and last night. I drank cranberry juice and cherry juice and later in the night packed myself with more ice and now this morning I am doing a lot better. It only hurts when I twist my waist but a lot more bearable. Thank you God and for all those who prayed for me. It was greatly appreciated.

So hopefully by tomorrow, the pain will be completely gone. Keeping my fingers crossed. Big hugs to all and have a beautiful week.

Happy Mother’s Day!

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Just posting a quick … Happy Mother’s Day! 🙂

Poems just for You!

Mother,
You’ve given me two things
One is roots
The other’s wings

– Anonymous

Happy Mother’s Day – Anonymous

Celebrating the meaning of Mother’s day.

“Happy Mother’s Day” means more
Than have a happy day.
Within those words lie lots of things
We never get to say.
It means I love you first of all,
Then thanks for all you do.
It means you mean a lot to me,
And that I honor you.

But most of all, I guess it means
That I am thinking of
Your happiness on this, your day,
With pleasure and with love

Happy Mother’s Day!