Please Read My Post and Provide Info if you can. I need to know.

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RodO
New Member


Date Joined Mar 2012
Total Posts : 5
   Posted 3/23/2012 8:35 PM (GMT -6)   
Hello all. I am new to this forum and belong to no other. I came for some guidance and advice on the topic of M.S. I wish that I could be brief but to do so would not do justice to the information I need to relate to you all.

I am a 48 year old married black man. I am also a military veteran (post vietnam era) I am self employed and a father of 5. In approx. 2003, I experienced a problem with a dead left arm. It started as a feeling of having a tight band around my left wrist. After a week or so, that feeling seemed to migrate up the arm to mid way between the elbow and wrist. After approx 2 weeks, that banded feeling and the accompanying weakness moved to the shoulder on the left side. At thatt time the left arm became very weak... almost unusable. The problem persisted for more than 2 months. My initial thought was that I had suffered a pinched nerve.

Over the course of the following weeks and months, I began to experience or strange feelings and sensations. Those included a migrating numbness that lasted for days or weeks in either arm. The same began to occur in the left leg. After sometime, these manyHowever, syptoms would almost COMPLETELY go away for months or weeks. During this period I never sought medical help because I assumed it must have been a nerve problem. I also began to get a persistent high pitch ringing in both ears.... that never goes away but sometimes gets more piercing.

However, in approx. 2007, those initial symptoms returned with a vengence. Now along with the numbness, there was pain. The pain was in my joints and tendons. Chronic Diarreha and constant urination were common during this period so I rarely considered they might be substantantial issues.

Additionally I developed a severe pain in my lower right abdominal area and a simutaneous twisting feeling in my right testicle. Of course, that last symptom sent me running to the doctor.
I went to see my long time PCP who treated my borderline hypertension and seasonal allergies. Upon entering the treatment room, the doctor remarked that I appeared to be pale and jaundiced appearing anemic.
The PCP ordered lab test along with the physical exam. He de.termined that I had a swollen prostate. No anemia, low testosterone, high albumin, reduced liver functioning, and kidney function. (Blood results). During a follow up with the longtime PCP he told me that he had suspicions of what was ailing me but.... he told me that he could on be sure with a multitude of testing which would be very very expensive. Since he knew that I was uninsured, he informed me that he would give me three or 4 weeks to find insurance, but he needed to start the testing. He was concerned also because Lymphocytes were elevated. While in the original test and the follow up several moths later, although no infection was present. I was informed that the cost would bankrupt my family.

After the search for insurance failed, I was directed to the Department of Veterans Affairs, VA hospitals. During that period, the weakness and pain in the arms and tendons was replaced by extreme fatigue. I was always exhausted.... extremely. Initially the PCP at the VA's didn't seem to believe me. Their initial treatments were antibiotics because of the low neutrophils and high lymphocytes. For more than 18 months there was just testosterone therapy and a medicine to relax the prostate with differing antibiotic. The urology specialist told me the pain was in my head.. In 2011, I had an episode where my vision went out completely while I watched tv one evening with my family. This lasted less that two minutes, and was like a very prolonged blink....just nothing. After that the vision returned but it is extremely blurred in both eyes with the left being much more affected. The vision often gets worse with no apparent cause.

In June 2010 I began running the occasional low grade fever which would last for a few days and go away. In June 2011 I suffered a fever which was first noted at 101 degrees. I attempted to ride the fever out. However, it soon rose to 105.6 an over night hospital stay was able to reduce the temp to 101 wherein I was released. In the moths since, I have developed very promenent shaking in my hands, nausea and vomitting, dizziness, and occassional vertigo. Since the 105 degree fever, I have had to more fever related episodes spaced approx 3 months apart. In those cases the temps have risen to 101 and 102. In all instances the fevers were deemed of unknown origin. From the start, blood tests have shown high lymphocytes and low neutrophils along with low potassium, vitamin d, and vitamin B12. The only exception to the high lymph and low neutrphils were during or immediately following the three fever episodes.

In December 2011, I started to develop pain in my boness (not joints) and constant tightness in my tendons.... especially in the mornings when I feel as if I am going to snap them if I move wrong. After this, I had my first scans. A ct scan showed a varicocele in the right testicle. In January 2012 a CT of the throat found a raised mass in the Pharynx area and several nodule in the neck and naso-sinus areas. In January 2012 a blood test showed high RF factor. Rhumatology consult ruled out RA. In February 2012 MRI on brain reported "a few tiny foci in white matter subcortical... etc". February 2012 was the time for a Spinal Tap. Spinal Tap results were : Color is clear / colorless , high CSF protein, high lymphocytes, and monocytes low. the serum test done with the. Spinal tap shows High albumin. March pathology report reports no O bands were found, also states demyliniation suspected based on these results. A cervical spine MRI completed March 2012 does not mention plaques or lesions, only describes degeration of disc.

Through out this period, I have not had discussion with any doctor concerning the results. I am only told that they are still working towards answers. I have began treatment with Gabapentin and meclizine for bone and tendon pain and for nausea, dizziness, vertigo, I still shake like crazy when I try to do something with my hands.


I was drawn to this group because my symptoms lead me to MS. But without bands, I am now at a loss. I know this isn't in my mind. Tests for lupis, sjorgen, and all others are negative.... including Lyme..... I've had every test I can think of....... its been a relentless illness only giving me short breaks of several weeks or a few months.

The VA DOCTORS areent giving me answers. If someone has an idea what is plaguing me please help.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 3/24/2012 9:49 AM (GMT -6)   
Your symptoms are not consistent with MS. Bone and joint pain is not typical and your liver, kidney, recurring fevers, and lymphocyte numbers are also not found in MS. It does seem you have some sort of infection. Lyme disease is the first thing that comes to mind. False negatives are extremely common in Lyme disease.

Please consider posting on that board. You will get lots of information that may send you in the right direction. I hope you find answers soon.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

RodO
New Member


Date Joined Mar 2012
Total Posts : 5
   Posted 3/24/2012 10:14 AM (GMT -6)   
Thank you for your reply. Yes, the current symptoms include the most awful pain in my bones (arms). However, the liver functioning test results were a one time event. It seems that these many symptoms are progressing... what started as a weak arm and extreme fatigue has morphed to include all of these others at one point.

My congnitive ability was an early casualty and it has seem to run in cycles along with the other ailments which seem to come on and stay for a few months then disappear only to return stonger.

Thanks again for reading.

nana68
Regular Member


Date Joined Mar 2011
Total Posts : 474
   Posted 3/24/2012 6:59 PM (GMT -6)   
have you been evaluated for parkinson's

RodO
New Member


Date Joined Mar 2012
Total Posts : 5
   Posted 3/28/2012 10:32 AM (GMT -6)   
Nana:   I have not been evaluated for Parkinsons.   My problem is that as time goes on, the symptoms that once were limited have become extensive.   If I only consider what I experience in any one or two month period in isolation, I will never come to a resolution because the symptoms are ever changing.
 
My body suddenly started to ache and fall apart. Meanwhile, every  CBC and Serum blood Test has shown multiple abnormalities for more than 2 years.   My CSF is abnormal.   My MRI show few tiny white matter foci ( but no lesions) and degereration of bone. 
 
The slow pace of information from my VA doctors causes more stress.
Im lost as looking for any direction.   Thank you for your input.

nana68
Regular Member


Date Joined Mar 2011
Total Posts : 474
   Posted 3/28/2012 12:25 PM (GMT -6)   
can't they tell what is wrong with your csf I am only asking because I do not know I am only assuming that the csf should show something. I myself just had a lumbar puncture done and am waiting for results to come back but for now with me they are assuming that it is left overs from icu critical illness polyneuropathy/myopathy...tests show nothing but neuro says its residual. I hope you can get some answers its terrible not knowing whats wrong...believe me I am going through this still
treacheal stenosis,fibromyalgia,panic disorder,ptsd and who knows what else

RodO
New Member


Date Joined Mar 2012
Total Posts : 5
   Posted 3/28/2012 7:20 PM (GMT -6)   
CSF Results: Protein High
Monocytes Low
Albumin High
Gamma Globulin High

nana68
Regular Member


Date Joined Mar 2011
Total Posts : 474
   Posted 3/28/2012 8:25 PM (GMT -6)   
can they figure out what it means
treacheal stenosis,fibromyalgia,panic disorder,ptsd and who knows what else

RodO
New Member


Date Joined Mar 2012
Total Posts : 5
   Posted 3/28/2012 8:34 PM (GMT -6)   
I'm sorry it is actually Beta Globulin that is high in my CSF. Not Gamma Globulins. Yes, I have access to the records but unfortunately I don't have access to a doctor or radiologist to tell me what it all means. Additionally, the problem is that the VA doctors don't seem to discuss the results between offices or with primary care...... e.g. neurologist not aware of chronic lymphocytosis and neutropenia. MRI states complaint reason for MRI is for headaches.... instead of the many neurological symptoms..... etc.
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