The Puzzle

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

The Puzzle

Postby silentkid » Tue Feb 18, 2014 10:41 pm

Hello all. Do you like a good mystery novel? Feel free to tell me what you think is up. Then i will post part II....

On Wednesday, September 25th, 2013, (my 43rd birthday), I was in the shower getting ready to go out to dinner, when suddenly my right pinky and ring finger, and the side of my right hand became numb/started tingling. I had been doing repetitive work with that hand at a construction site in the weeks leading up to this, that i figured the symptoms were related. I started looking online and found info about Cubital Tunnel Syndrome (like Carpal Tunnel, only affecting a different part of the hand). The numbness persisted for days and through the weekend, and so that following Monday, the 30th, i went to my Chiropractor to get an adjustment and ask his advice. He did the usual workover (i've been going to see him for 34 years). The hand didn't get better, so i went back to see him on Wednesday, October 2nd. This time, he used some sort of traction device which i laid my neck on and which put upward pressure onto my cervical/thoracic spine - a treatment he had never done on me before. He also gave me a more rigorous adjustment to attempt to resolve the hand symptoms. The following Friday, the 4th of October, i started to notice a new symptom - when i tilted my head i felt a little dizzy, and when i looked into the extreme right of my peripheral vision, images were doubled. This double vision began to get worse over the next few days, so on Tuesday, the 8th of October, i went to see my GP. She decided that i was probably having some sort of spell of vertigo, and that it would go away. I should mention that i have never had any symptoms remotely close to any of this before my birthday - so it was all becoming a little unnerving.

Now, here's where this all starts to sound like an episode of 'House M.D.' - during all of this, i had this 'cyst' thing on the back of my ear - earlier in September i had something bothering me on the back of my ear that my wife told me was 'just a blackhead' and to 'leave it alone'. I am not one to leave anything alone, and so i incessantly picked at it - it eventually got infected - and around the same time i got the hand symptoms, the infection had healed over and became what looked like a sebaceous cyst, or at least that is what the Doctor thought it might be - it was the size of a chickpea on the bottom back of my ear. The doctor set up an appointment for me to go see a neurologist about the hand, and sent me on my way. Oh, also - possibly unrelated, but i want to be sure i dot all of my 'I's here - my 18 month old son got his Varicella vaccine on Thursday, October 3rd, the day before the vision symptoms started.

Moving along - by Friday, October 11th, my vision had gotten so bad that i could barely drive - anything beyond six feet in front of me was doubled unless I closed one eye. I was working on my computer that morning, and, as i often do, i happened to be sitting on my chair with one foot under my ass - and when i got up, i realized my foot had fallen asleep - but the numbness wasnt subsiding, and through the day it got worse. The next morning i started to feel numbness in my groin and ass - and by Sunday i began to get numbness from the waste down. Naturally i started to panic, and had my wife drive me to the emergency room.

At the emergency room my bloodwork was taken and the doctor told me that he 'cant put my symptoms together' and that i should keep my neuro appointment for that Tuesday and try to get an MRI done, which i did. The standard ER bloodwork was all normal. The brain MRI i had done that week came back with multiple bilateral white matter signal abnormalities - one 'superior to the right temporal horn', two 'adjacent to the posterior aspect of the lateral ventricle, appearing to radiate toward the ventricle', one small one seen 'within the left side of the corpus collosum' and one 'within the left septal collosal interface'. Additional signal abnormalities were seen 'within the left centrum semiovale'. Additionally, the MRI showed significant 'bilateral ethmoid opacification' in my sinus cavity.

Now i started getting scared - and googling was pointing to many things, MS being the scary one - but also Lyme disease, Gullain Barre, and a host of other infectious conditions. I went to an eye doctor who diagnosed my double vision as '6th cranial nerve palsy'. My condition continued to worsen quickly, by the end of the weekend of the 23rd i was totally numb from the waist down, my vision was so bad i had to wear an eyepatch at all times - i was dizzy, depressed, exhausted and anxiety ridden. I started thinking that the thing on my ear maybe had been a tick - and that this might be Lyme. I could not get my GP or a dermatologist to biopsy the cyst, which i started to think now was maybe a tick that had gone subcutaneous... when i put a flashlight up to my ear, in the mirror i could see a small. sesame seed sized black mass inside of the ear.

My neuro and GP, after looking at the MRI, were thinking MS - so i was sent for a follow up Brain with contrast and C-Spine with and without contrast. Brain with contrast, done 2 weeks after the first MRI, showed no changes from the prior one. The C-spine had no lesions, but did show a slight herniation at C5-C6 (my Chiro said that could explain the hand issues).

During this time i also tried to get my GP to put me on Antibiotics, in the event that this might be Lyme or some infection, but she refused to 'blindly prescribe antibiotics'. This response frustrated me because so many times in the past, GPs have tried to put me on Antibiotics for the common cold, and often prescribe teenagers Abx for acne - but she wouldnt hook me up for possible Lyme - so maddening. The neuro wanted me to go on steroids - but i insisted that i wanted to find out if this was Lyme before i did that, because steroids could be a bad idea if i indeed was fighting an infection. Instead i started a near paleo anti-inflammatory diet regimen, and started taking Turmeric/Curcumin, Vitamin D, B12, a Multi, Fish Oil, a Probiotic, Cell Food, and special Garlic capsules.

I finally was able to get an appt. with an infectious disease doctor on October 29th - a full month into the nightmare. She had me get blood tests done at Quest and then put me right on Doxycycline in the event this was infectious. That bloodwork came back with a slightly elevated ANA screen (complements were later negative), EBV IgG positive (IgM negative), and 'Q-Fever' screen came back positive (confirmatory PCR was later negative - after being on Abx for 10 days, though). All of the other tests were negative (there were tons - 39 in all), including the Lyme Elisa and Western Blot bands and many tick coinfection screens.

Meanwhile, 7 days into the antibiotics and my symptoms were, albeit slowly, halting, and then actually getting better. Fast forward to early December - and my lumbar puncture. They did an MS profile, Syphilis(negative), West Nile(negative) and were supposed to do a Lyme PCR, but it didnt get done - the Dr said he requested it, but the hospital said that he didn't. Another majorly frustrating moment in this saga. The MS profile came back with:
IgG, Quant, CSF: 9.8 (High), normal IgG, Quant, Serum, normal Albumin CSF and Serum, IgG/Alb Ratio, CSF .41 (High), CSF IgG Index 2.1 (High), IgG Synth Rate, CSF 35.4 (High), Myelin Basic Protein, CSF 1.5 (High), and 10 Oligoclonal bands in the CSF not found in the Serum.

Now i was depressed. How much my life changed in the matter of a week or so in the Fall... i was relatively healthy and problem free before this all. And now my Neuro was definitely leaning toward an MS diagnosis - saying that the only criteria left for a postive diagnosis would be a second attack down the road, with some changes in the white matter lesions at that time.

Meanwhile, i was on the Doxy for about 6 weeks, and the symptoms had been improving - by January the vision was getting better, i could drive without my corrective glasses most of the time, the numbness had retreated to just my feet and toes, and slightly in my abdomen on occasion (a slight 'tightness' at times).

So - sorry for the long winded introduction - would love to hear any input, thanks for reading. There is more to this story, but i will post Part II after you guys tell me what you think.

Thanks again

P
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Re: The Puzzle

Postby silentkid » Tue Feb 18, 2014 10:46 pm

Oh - a couple of things i forgot to mention -

I did not have any weakness in any muscles - i had full strength in mobility and coordination.
I did not have Lhermitte's sign or the Babinski sign.
My optic nerves were checked and were perfect.

Not sure if any of that matters.
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Re: The Puzzle

Postby lyndacarol » Wed Feb 19, 2014 9:47 am

Welcome to ThisIsMS, silentkid ("P").

First, let me state that I have no medical background; I offer you my "input" as you invited us to do. You may not have MS at all, but there is a possibility; it is an exclusionary diagnosis - made by ruling out other possibilities, as you may know. Generally, it is not easy or quick to diagnose. Before expensive tests even existed to diagnose MS, doctors used to diagnose MS on the basis of symptoms and if they temporarily worsened when the patient sat in a hot bath for a while. (Could one equate this with your shower experience, described in your first paragraph?) IF you do have MS, you have found many supportive friends at this site.

Since numbness and tingling in the extremities (fingers/hands/feet/toes) is called "peripheral neuropathy," compare your doctors' investigation with these suggestions from the University of Chicago:

http://peripheralneuropathycenter.uchic ... #bloodtest

I doubt that your ER blood tests included any of the following:

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test (In addition, I suggest a "fasting blood insulin test.")
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

Personally, I strongly suspect that wheat/gluten sensitivity (which can develop at any time in life) plays a major role in many neurological symptoms by causing excess insulin production. I think you are wise to have started a near Paleo anti-inflammatory diet. I encourage you to find a doctor who practices functional medicine; these physicians are especially good at puzzles or mysteries; they look at whole systems, not just one specialty.

Please keep us informed of how things go. All the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: The Puzzle

Postby silentkid » Wed Feb 19, 2014 10:16 am

Thank you, Lynda, for the response... i did have SOME of those lab tests, like the B12, Thyroid, liver, kidney, HIV, Hep C and B, and Lyme. All were negative/normal, until i recently went to a Lyme doc who sent my bloodwork to IgeneX - which came back positive for Lyme, both IgM and IgG - but only positive according to the IgeneX criteria, not the CDC/IDSA criteria, so i dont know what to think. I've read about the problems with the CDC criteria so i am thinking this is what is going on.

I am following up with the Lyme doc on Monday so we will see where i am at - i would also like to be screened for vasculitis and to do the fasting insulin/glucose tests, and the anti-MAG test - i will look into those. I dont have any of the other symptoms of Celiac's (my brother in law has that), so i dont think thats an avenue i need to check. Your hypothesis re: insulin is very interesting. I certainly have had a sweet tooth most of my life; if it didnt cause this situation, its possible it at least aggravated it. Amazing how easy it is to change your diet when you think you are dying, though!

Another thing - i started LDN 1.5mg two weeks ago and have found it to have already helped tremendously with my fatigue, mood, and that 'poisoned' feeling i was getting in the mornings has subsided since as well - its enabled me to get back to work which was a real struggle a month ago.

Thank you again for your help

P
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Re: The Puzzle

Postby lyndacarol » Wed Feb 19, 2014 12:15 pm

silentkid, I commend you for all you are doing in this "puzzle" problem; at the very least, you are doing all you can – you are leaving no stone unturned.

I have just a couple thoughts to add:

#1 Remember, the glucose test and the insulin test are two different tests. Sometimes people are confused and think these are the same test.
#2 Celiac Disease is the extreme end of gluten sensitivity. Gastrointestinal symptoms are not necessarily part of gluten sensitivity.

Dr. Amy Myers, M.D. spoke on gluten sensitivity:
http://www.doctoroz.com/episode/gluten- ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog, depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes. @4:30 she says more than 18 million have been diagnosed with gluten sensitivity; suspects that 1 in 2 probably has gluten sensitivity

@5:00 mention of study in New England Journal of Medicine several years ago that linked gluten sensitivity to 55 diseases


#3 If you enjoy reading, I recommend Wheat Belly by Dr. William Davis. On page 51 he mentions that naltrexone blocks the mesolimbic reward system's opiate receptors to which wheat also binds. I can't explain the connection, but this may be where LDN and wheat/gluten sensitivity (with neurological manifestations) are joined.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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