New to forum, looking for direction

[efarrar]

Hello,

I am a 32 male and have had my symptoms for two years. They include:

1)Pins and Needles from my toes, my legs, recently progressing into my pelivs and lower abs
2)Vertigo, dizziness if I turn my head to quickly, balance is more horizon based so anything spinning or swinging throws me for a loop.
3) ringing in my ears, with ear pain, and some hearing loss.
4)having problems remembering things
5) extreme fatigue, sleep makes symptoms less prominent, they are the worst when I am working a lot or unable to get at least 6 hours of sleep in
6) muscle twitching, fatigue, cramping....feels like I have lactic acid buildup
7) sometimes have problems distinquishing tempreture of things
8) sometimes think I have something gripped tightly and I drop it.
9) Extreme night sweats, like drenching.
10) problems sensing items touching my skin, example: was trying to get to sleep for the night, felt like my wife was driving her elbow into my back, I actually yelled at her and she shows me it is just a pillow resting on my back.
11)frequent migrains that start at the base of my skull, and work they way around to my right eye.

I have had most of the symptoms for a while, but had a major occurance last August, since then minor bouts here and there but symptoms getting stronger and moving to other parts of my body.

My mother passed away in 1993, she suffered from progressive multiple sclerosis.

I am posting below some of my test results that were high/abnormal. Neuro is concerned (MS) with the family history that I have and my symptoms but there have been no lesions, or bands discovered in any of the testing. Neuro is at a loss....can anyone help me understand these results...point me in another direction anything? Please see below.

Pertinent positives from summary report:

*normal cranial nerve function other then Weber testing lateralizing to the right.
*Hyperethesia in the feet distally.
*Coordination and strength are normal other then 3/5 left extensor hallucis longus function
*There is Romberg positivity

MRI Scan of brain, and C spine with and without dye:

*retrocerebellar pouch (only thing I could find on the net is that it is some type of cyst.)
*some straightening of the cerivical lordotic curve.
*bulging disk

Blood work:

*WBC 9.2 on 4.2-9.9 scale
*MCHC 35.1 on 32-36 scale
*Monocytes 10 on 05-13 scale
*Absolute Monocytes .93 on a .25-.90 scale
*SED Rate 15 on 0-15 scale
All other test fell within the median range

Lumbar Puncture:
* Total protein, CSF 57 on 15-45 Scale

[Marciab]

I can relate to most if not all of your symptoms. After 16 years of strange nuerological problems, mine turned out to be related to gluten. Most doctors are still unaware of how gluten affects our nuerological systems. If you'll google gluten you'll see what info is available now though.

I didn't see any test results for gluten antibodies and that's always a good place to start. If your tests come back negative (some labs just can't get this right), I'd try the diet anyway. MS is a common misdiagnosis for gluten sensitivity.

The gluten sensitivity section on this board or any gluten free website can give you the info you need about the diet ...

Best wishes ... Marcia


Oh and you don't have to have digestive problems to be sensitive to gluten. I had what I considered mild IBS for 15 years before all hell broke loose and I apparently got celiac disease.

I almost forgot. I'm in holiday mode here ... Here's a thread I started last year about my neurological symptoms and diet. If you'll look at what Cara, Anne, Karen and others say about gluten it may help you understand it better.

http://brain.hastypastry.net/forums/showthread.php?t=6233

[creakyneck]

Hows your C-Spine? Any recent X-rays, or MRI's? Usually one of the first things a Neuro or GP will check in response to Parathesias (tingling, pins/needles in hands/feet), is checking your neck for spinal cord abnormalities.

Peripheral Neuropathy is also a possibility, and will also produce tingling sensations and possibly numbness of varying degrees in the distal nerves. Ask the Neuro about a QSART test. This will help diagnose abnormalities in the Autonomic Nervous System (ANS), which control a range of automatic body functions including heart rate/blood pressure, respiration, PERSPIRATION, etc.

These two items alone can cause several of your symptoms. Dizziness/ear pain combined sounds alot like inner ear infection, have it checked by your family doc or an ENT doc.

[joy]

Hi there. I had/have some of your symptoms. My troubles started in my cranial nerves. I have trigeminal neuralgia and meniere's disease. While none of yoyr troubles sound like the trigeminal neuralgia, the dizziness does sound like some of my meniere's troubles. And the pins and needles is also part of my peripheral neuropathy. There are forums for both of these things here on BrainTalk.

I have weakness in my extremities, drop things, have had the annoying feelings from clothes, etc. touching my skin. Also had awfully hot feelings in hands ,feet and several of the other things that you list.

And after I get stress worrying about all of this, my memory is not so good either. With the meniere's disease, there is a constant shrill sound in one of my ears. Just depending on how much else is going on at the time, it gets to be very annoying, especially on a quiet night when I want to get to sleep.

Feel free to read up on any of these forums and jump in and join us on any or many of them.

[Buttons2]

I didn't see where you had been tested for thyroid function,nor any testing for Lyme disease.

what did your doc say about your high SED rate?

[annelb]

Although I had great improvement in my neurological problems with a gluten free diet, I also want to mention B12. Low or suboptimal B12 can mimic MS. I had a friend who was diagnosed with MS and in a wheelchair. Turned out what she really had was low B12.

Testing for B12 deficiency is not always accurate. This article recommends the use of vitamin B12 in those with neurological symptoms. http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=16814909&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum
Blood Rev. 2007 May;21(3):113-30. Epub 2006 Jul 11. Links
Disorders of cobalamin (vitamin B12) metabolism: emerging concepts in pathophysiology, diagnosis and treatment.Solomon LR.
Section of Hematology, Department of Medicine, Yale University School of Medicine, 300 Cedar Street, New Haven, CT 06520, United Kingdom. lawrence.solomon@yale.edu <lawrence.solomon@yale.edu>

Although cobalamin (vitamin B12) was isolated almost 60 years ago, its biochemical, physiologic and neurologic effects remain incompletely defined. New observations suggest renal regulation of cobalamin metabolism; actions of cobalamin on nucleic acid and protein function; and a role for cobalamin in cytokine and growth factor regulation. Clinically, no gold standard has emerged for the diagnosis of cobalamin deficiency. Moreover, cobalamin resistance may occur in diabetes, renal insufficiency and advanced age, leading to functional cobalamin deficiency despite adequate cobalamin nutriture. Finally, high-dose cobalamin therapy may have salutary pharmacologic effects on neurologic function in a variety of disorders. Many studies lacked appropriate control groups. However, at this time, therapeutic trials with pharmacologic doses of cobalamin are suggested when findings consistent with cobalamin deficiency are present regardless of the results of diagnostic tests. While oral cobalamin immediate-release is adequate for many patients, its effectiveness in reversing neurologic abnormalities has yet to be established.

PMID: 16814909 [PubMed - indexed for MEDLINE]

There is some good information about B12 on the Vitamin forum here on BT.
Anne

[efarrar]

I didn't see where you had been tested for thyroid function,nor any testing for Lyme disease.

what did your doc say about your high SED rate?

Nothing....said all my test came up clear, and said he didn't need to see me anymore....so I demanded the test results....my SED rate was flagged, my proteins in my spinal fluid were flagged as well as my abosolute monocytes were flagged by the lab as abnormal.

They did a nerve biopsy to rule out Periphial Neuropathy, as well as the test were they send shocks through to see how the muscles/nerves react. The have pretty much ran every test, except a mri of my complete spine, only my neck has been done.

My primary care physician said he believes it to be autoimmune, the partner of my original neuro said he is leaning to something in the central nervous system, and is concerned with the ms in my family....but the original neuro is the one who gave me my results and sent me packing. I tried to see if I could meet with the partner who has been seeing me of late...and I just get the original neuro's assitant calling me and stating there is no need to see me because he doesn't think it is neurological. Let's see, the mri should a cyst on my cerebellum, I have protein levels off the scale in my spinal fluid, my SED rate is at the top of the chart for someone under 55 for someone my age it is over the high mark. I was hoping something would ring a bell with someone....or someone might be able to give me some advice on how to attack the situation as a whole.

[lkatrych]

lack of B12 can cause neurological problems, this is common in vegans...Take your vitamins, htis can be irreversible

[Buttons2]

OK, if neuro isn't any help. My next suggestion would be to see an internist-sorry if that's been mentioned before (I didn't read back through here).

Are you doing any better right now?

Wishing you better days ahead....and some answers!
Buttons