Still Searching for Answers (Help)

[Padro46]

Any help from the Forum, On where to go what to do next--What am I missing--Would greatful--Sorry so long.


47, married, , weekend beer drinker, non smoker  from Jan 07
Height/Weight: 6 FT/205 pounds
Blood pressure 130/86 On 2-13-08
Body temperature (digital thermometer in Mouth) 2-25-09 morning: 97.6, evening:97.9-- 3-11-09—97.2—Morning---evening 97.6

Current symptoms: fatigue, non-refreshing sleep, feeling cold (not as warm as used to be), back of the head numbness (Ice Cream Brain Freeze), numbness on cheeks and jaw area and cheeks, lightheadedness, problems with balance, brain fog, minor chest and abdominal pains That seemed to move around from side to side and center Mostly dull pain But minor), constipation - Went from going daily to every third day or so--Not as much product when I do go.  Mouth Ulcers on tongue and swollen-Lack of appetite—don’t eat as much but gaining weight.

In 2001 chest pain, got Prevacid, then stopped it (Dec 2001), no symptoms’ after that. Colonoscopy/Endoscopy showed Acid Reflux--Otherwise Normal according to Gastro

First week in Dec 07 went to business trip to San.Antonio., worried about brother's cancer, but was in good health. Tuesday night had scallops, pods, and Cole Slaw and Bread, fries, ketchup, 12 beers, and short whiskey. No symptoms in the evening went to bed, slept ok, in the morning felt tired, lightheaded, brain fog, no appetite, so eating nothing except few orange pieces. Took 2 aspirins in afternoon.

Wed evening, lying, watching TV, suddenly (like someone flipped a switch) experienced burning pain behind the breastbone, chills, back of the head numbing and what felt like an Ice Cream brain freeze, and lightheadedness and brain fog continued.

Thursday went home, and to clinic, EKG normal, got Prevacide and Meclizine , that reduced chest pain, but not chills, brain fog, and lightheadedness.

Next days spent in bed, profound fatigue, lasted Jan-May. May -Present Moderate fatigue, non-refreshing sleep, and feeling cold, but no fever still continuing.

At this time (Jan 08) Primary doc did Complete Labs, and found nothing but elevatedEBV_ EBNA IgG 560, and gave some sinus sprays.

During summer months, constipation started. Had at least one bowel movement with blood.

Jan 4th 09 Both arms right below the elbow have started hurting kind of like a throbbing pain. Had just finished Vit D pills

February 09: cancer sores, rash on forearms, dry skin (All Over Body with Red Dots)

March 09: dropped Xanax and Lyrica, started multivitamins with iron.

TESTS:  

12/08/08
EBNA IgG 560
LDL Cholesterol (135)

  
Low normal vit B12--312
Low Ca (7.2) Nov 08

Nov 08
Antiprteinase (PR-3) = 6.4 (norm = 0.0-3.5)  

MAY 08
Sed Rate 3   May 2008
Sed Rate 2   Feb 2009  

10th JUN 08
Chest X-ray calcified granulomas
C-spine Impression: "Neural Foraminal caliber is low normal or mildly narrowed throughout the cervical spine. This appears to be the result on congenital factors".

JULY 08
CMV, IgG (27.4)
Toxoplasma gondii negative

SEPT 08
HHV-6 IgG = 1.80,  (IgM norm < 1.40)

Feb 09-
Parvo Virus B19=IgG 5.3  High

15th OCT 08
Started Topiramate (Topamax) 0.25mg, and Alprazolam (Xanax) 0.25 what helped a little with facial numbness


Dec 3rd 08
TSH  1.4
PTH 22
Vit D 25-OH =9.5  02-02-09-24.0  Scale 30-100
Mycoplasma pneumoniae
Arsenic,Mercury, Lead negative

10th DEC 08
EBV Nuclear Antigen (EBNA)    IgG     560.0   U/ML (Neg /=22.0)
EBV Early AG IgG <5.0 (Neg /=11.0)
EBV VCA IgG = 18.1 (Neg /=22.0)
EBV VCA IgM  <10.0 (Neg/=44.0)


Lyme total antibodies Neg (Elisa Test) July 08
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Other Tests:

- Blood Test-X 5   CBC, Comprehensive Metabolic Panel, Lipid, PSA, TSH, Lyme, HEP Panel, HIV Panel, Rheumatoid Arth. Factor, Sedimentation Rate-Westergren,  EBV Panel, B-12, Alpha Fetoprotein Serum, H. Pylori. Results:  With exception of EBV numbers and up and down Cholesterol LDL sometimes a little high--- ALL NORMAL
- XRAYS and CT SCANS--  MRI    Brain( Normal ) and C-Spine (see results under other)
- CT Scan Heart and Abdominal ---All Normal
- Chest X-ray X 2   One remarked a few calcified granulomas on X-ray 7-10-08 are present the other listed Brocades otherwise No acute Cardio disease identified.
- Colonoscopy and Endoscopy—Acid Reflux No other problems identified
- ENT exam- All Normal  Debate between Nuero and ENT On Dx Of Vestibular Neuritis
- Full Cardio Work-up:  Echo and CT scan, Carotid Artery Ultrasound- All Normal
- C-spine Impression: Neural Foraminal caliber is low normal or mildly narrowed throughout the cervical spine. This appears to be the result on congenital factors as I see no evidence of facet or uncovertebral hypertrophy.  Disc morphology is well maintained, as is spinal canal diameter.  

ANCA Panel:
Antimyeloperoxidase (MPO) <9.0  (norm =  0.0-9.0)
Antiproteinase 3 (PR-3) =  6.4(n= 0.0-3.5)
Cytoplasmic (C-ANCA)  <1.20  NEG
Perinuclear (P-ANCA) <1.20 NEG
________________________________________________________________________________________________

CURRENT MEDICATIONS:

Prevacid 30mg, from Dec 07
Multivitamin with iron
Occasional Aspirins
Plume fruit juice
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OTHER MEDS, DROPPED:

Some natural meds by Dr. Jernigan’s Borrelogen, Nutrametrix-OPC, Fish Oil Tablets
Alprazolam (XANAX) 0.25mg,
Topiramate (TOPAMAX) 0.25mg from Oct15th 08 to Jan 09
Vit D 50000 Units  
Vit B12 After Injections
Dr. Jernigans Protocol...

Waiting on another Thyroid Panel from a Endo, However do not expect anything--He was happy I was there with a normal Thyroid Panel

[Padro46]

LP-Tomm Morning still seraching for answers

[Padro46]

so are you saying this CAN be the cause of my issues?? lightheadness-back of the head numbness-fatigue--etc

[Dr. Kokil Mathur]

Hi
So finally you have your answers. So many nerve compressions can cause a lot of aches and pains however not enough compression to cause neurological signs. Maybe a chiropractitioner can help you learn some exercises that will strengthen your muscles and lift the pressure off the nerves to some extent.
Please let me know if there is any thing else and do keep me posted. Take care!

[Padro46]

Wont go into the Technique--will skip to findings
Findings:
L1-L2: Within normal limits

L2-L3: Within normal Limits

L3-L4:Mild changes of degenerative disc disease are seen at this level with mild lateral bulging of the disc margins. Mild facet arthrosis is also seen posteriorly. No HNP is identified.

L4-L5: A broad based,3mm, posterior anular disc bulge is present.  In concert with facet arthrosis, there is mild to moderate narrowing of the neural foramina seen bilaterally along with mild concentric canal stenosis.  There is some increased signal present within the lateral margins of the posterior anulus suggesting anular tears.
L5-S1: Mild degeneration of the posterior facets is seen at this level. No HNP or spinal stenosis is seen.

Signal within the vertebral bodies is normal throughout.  The conus ends normally at the T12-L1 Level,

Impression:Impression:
Mild nueral foraminal and spinal stenosis are seen L4-5 level due to a small broad-based disc bulge and posterior element hypertrophy.  There appear to be small anular tears at this level as well.

Thoracic

Findings:  Changes of degenerative disc disease are seen in the mid and lower thoracic spine.  There is a broad based, 3-4mm, central disc protrusion seen at the T5-T6 level resulting in mild spinal stenosis.  The canal diameter has been narrowed to approximately 8mm.  A 2-3mm disc protrusion is also seen centrally at the T6-T7 level resulting in mild spinal stenosis.  Canal diameter has also been narrowed to approximately 8mm at this level.  A broad based,2-3mm disc bulge is seen at the T7-T8 level.  Canal diameter has been narrowed to 9mm, A minimal,1-2mm disc bulge is also seen at T8-T9.

Signal within the vertebral bodies is normal throughout.  There is no evidence of a significant compression fracture seen.  Signal within the thoracic cord is normal as well.  No abnormal enhancement is identified.

Impression:Impression:
1. Mild to moderate spinal stenosis is seen at the T-5-6 and T6-7 levels due to small herniated nucleus pulposus.

2. Mild spinal stenosis is seen at T7-T8 due to a braod-based disc bulge.

[Padro46]

Post Infectious Encephalomyelitis any thoughts this is from last Nuero visit??

[Dr. Kokil Mathur]

Hi
Thanks for the update!
Heart rate slows down during sleep. Peiople are known to have a sleeping heart rate of 20/min without any problem. However if this is associated with symptoms, it should be looked into. Sinus node dysfunction and atrioventricular conduction defects should be looked into. Endocrine causes are ruled out in your case. A resting heart rate of 60/min during the day is fine. Response to exercise needs to be investigated.  About MS causing low heart rate—I am not sure.
Hope this helps. It is difficult to comment beyond this at this stage. Please let me know if there is any thing else and do keep me posted. Take care!

[Padro46]

Internal Med doc ran some bloodwork and did a 24 hour holter test-The only issue was a low heart rate of 44 and 45 during sleep--he set me up with another heart doc--He advised this could be some of my lightheaded issue, however during day my normal is about 60BPM--Also Nuero is recommending a Spinal Tap to exclude some things like MS and the like--do not want to do this unless I really need it--Your thoughts

[Padro46]

Results from Endo

Testosterone, Total---291                    Scale  250-1100

%Free Testost          1.29        Low     Scale 1.5-2.2

Testos, Free                37.6                Scale 35.0-155.0

LH (luteinizing Hormone)    6.7             Scale 1.5-9.3

FSH                                 5.9              Scale 1.4-18.1

FrT4                                 1.06            Scale  0.89-1.76

TSH                                 1.10            Scale    0.35-5.50

Cortisol, Total,LC/MS/MS    15.9          Scale     4.6-20.6

Prolactin                              5.7           Scale    2.0-18.0

Comments from Endos Nurse---Everything looks Pretty Normal--See You in six months.

[Dr. Kokil Mathur]

Hi
Thanks for keeping me posted!
Post viral fatigue syndrome is probably what you have and this is a very common disorder. Also there are no magic pills for it. This can be treated patiently with exercise, good diet, work out plans and multivitamins. A diet rich in fruits, vegetables and proteins should be taken along with a multi vitamin supplement. Eat 5-7 small regular meals every day. Drink plenty of water. Do deep breathing exercises. Join a good trainer and start an exercise program that will help you build up stamina. Try doing an activity a day that interests you. Try to remain calm.
Hope this will help you. Please let me know if there is any thing else and do keep me posted. Take care!

[Padro46]

What do you do when a Internal Medicine doc says there is no treatment for Post Viral/EBV find one that will--and what are the possible treatments for this????

[Padro46]

Thanks will try anyone at this point--However is there anything to do for Post Viral Issues other than treat symptoms??

[Dr. Kokil Mathur]

Hi
Yes, an internal medicine specialist will be able to help you with post viral issues.
Take care!

[Padro46]

still searching--What kind of Doc will see you without high IgM numbers--Is a Internal Medicine Doc a good source for Post Viral Issues??

[Padro46]

P.S.--also getting a addtional MRI withing 60 Min is not possible

[Padro46]

Symptoms are pretty consistant--Over the course of almost a year and 4 months--Really dont think it is TIA, However would love to discuss further.  Thanks

[boron]

I know Padro's case (from online discussion).

His symptoms are fairly CONSTANT, and mainly include facial and back-of the head numbness, low body temperature, unrefreshed sleep, brain fog, and fatigue.

Anyone with low body temp?

[Padro46]

I would do anything to crack this mystey  It has been 15 Months now--also my head thing is almost daily and have had (2) MRIS with/without Contrast all normal.

[Dr. Kokil Mathur]

Hi
Thanks for writing to the forum!
I can understand your frustration and empathize with you. A group of symptoms not explained by a single disease but by a combination of diseases is called a syndrome. Yes CFS can explain your symptoms.
Having said this, I would like to add that it could also be TIA, if the symptoms come and go. TIA OR transient ischemic attack is a temporary neurological symptom wherein the blood supply to brain is temporarily cut off. The episodes last for a maximum of 24 hours and then resolve or a new symptom starts. To diagnose this, you would need a prompt evaluation (within 60 minutes) to identify the cause and determine appropriate therapy. CAT Scans or MRIs done later or when you are fine will not reveal anything.
Too much stress and sleep disorders too should be looked into.
However there is one thing you must remember that I have not examined you. Nor is it possible to share detailed history on net. It is not the same as talking face to face. Hence you have to depend on the doctor who can examine you. I can only provide suggestions based on the information available. If we talk, together maybe we can crack the mystery!
Please let me know if there is any thing else and do keep me posted. Take care!

[Padro46]

Thanks for the response--I have been told that anything with syndrome on it means medicine does not know what it is.  Is there a cure for CFS and can it be the cause of my most pressing problems---Occipatal Head Pain--and Numbing of the Jaw area--and of course Tiredness??   Thank You

[Dr. Kokil Mathur]

Hi
Thanks for writing to the forum!

Well, read through your post. From you symptoms it sounds like chronic fatigue syndrome. The symptoms include widespread myalgia and arthralgia, cognitive difficulties, chronic mental and physical exhaustion, headaches and concentration difficulty and memory problems. Sleep-related disorders and depression are other possibilities. You must consult a sleep specialist.

Hope this helps. It is difficult to comment beyond this at this stage. Please let me know if there is any thing else and do keep me posted. Take care!