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Does this sound like you?

Postby zekebcfs on April 10th, 2008, 3:00 pm

I think bringing back one of my old post may help some of you new members asking all the what if questions.

I seem to have a long history with what I would call very subtle neurological problems for quite some time. I tried to get my symptoms reviewed but it seems that my problems just keep getting worse and seem to be transient. Of course it has been only in the last two+ years that my symptoms became problematic enough that I have been seriously seeking medical evaluation.

Some history on myself!
Since I can remember back in college days (1993-1997, 1998-2001)I would get pain behind my right eye when under considerable stress. I would get the occasional tingling but nothing to prompt me too seek help. I don't think the frequency of the tingling was anymore than any "normal" person would get. I had also experienced numbness but who has not! If I sat to long I began to get a tingling sensation around my head (may be do to looking down to long...bad neck).

Also, I did have all sort of items I would describe as tics. I think I got some of these tics due to two car accidents in which I probably got whiplash but did not have the money to seek medical attention. Besides I was young and dumb! I have known for years that I should never sleep on my stomach because I get intense headaches that come from an intense pain developed at base of skull. This also provokes the intense pain behind my eyes but a little stronger on the right eye along with neck stiffness and tightness.

Started with
1. Neck stretching (1993-2003), Car accident one-1993
2. Pulling in my abdomen (1998-2000)
3. Right-blephersopasams w/irritation and redness (blepherospasams) (2004-Today)

In 2003 I went to see a Chiropractor who worked on my neck and got ride of the neck stretching habit or call it tic if you will. The pulling in of my abdomen seemed to just go away on its own. If I sleep on my stomach I will get the intense neck pain, eye pain and neck stiffness.

In 2004 I began to have eye dryness and redness in both eyes but my right eye seemed to be more affected than my left eye. I have never had double vision or seen lines striation in either eye. Initially I went to my GP who did all kinds of blood test but I can't remember what specifically they where other that CBC and Lyme disease testing. I was then referred to several ophthalmologist (5) who intern referred me to several Neuro-Opthamolologist (4). All the neuro-opthamologist worked in the same office. All said I had dry eye and eventually given a diagnosis of blepherospasams (Right eye). I got Botox that stopped the right eye grimacing but never got rid of the irritation or redness. I then began tapping my right eye shut to preserve moisture during sleep.

Now the right eye blepherospasams are under control for about a year with Botox and tapping the right eye shut at night. This about finishes 2004.

In late 2004 I begin a new job and I am on travel for work under very intense work conditions and 18 hour days for two weeks several times during 2004. Long hours on the computer having only programmers fuel...sugar or fast food at best!

In early 2005 I began another very aggressive schedule. My work schedule includes going in at 2:00 am for a 12-15 hour shift for two months. I foolishly keep going to the gym and working out very hard with little knowledge of proper nutrition for these two months.

I begin to develop: Breathing problems, Heart palpitation, Racing heart, Agitation, Swallowing difficulties, General feeling of malaise and constipation that I can remember.

The breathing difficulties send me to the ER several times. I was sent on my way home almost every time with a diagnosis of anxiety even though I don't know what I was being anxious about. They go through the normal blood test, x-rays or CT scans all come back clean. In hind sight it probably was very stressful but this was a new job and I was not about to let my co-workers down!

Midway through 2005 my GP sends me to several specialist because of my complaints listed above.

1. I went to a cardiologist that gave me blood test, stress test, and all kinds of imaging test of my heart. All came back great. No cardiac problems.

2. Parallel to the cardiologist I am sent to an ENT surgeon. The ENT says I have a diverted septum and operates to correct the "defect." Honestly, I don't think it was that much of a deal but I guess the anxiety of needing to know what the hell was wrong with me got the better of me and I allowed him to operate on me without a second opinion.

3. Later my GP sends me to a pulmonary specialist. This Dr. gives me all kinds of breathing test. All lung breathing test come back clean. I don't think I ever had an MRI of my lung but I know I had several ct scans of my chest. All pulmonary CT scans come back clear. The pulmonary specialist also sends me for two sleep test that returns a diagnosis of sleep apnea. I was tested for Sjogren's (Anti-SSA/SSB), Lupus and Arthritis. All came back negative.

4. My GP further sends me for a swallow test and a sonogram of my intestines. All come back clean except for some compaction in my ascending colon. I was told this was normal in America!

Around October 2005 my right eye blepherospasams are back and the last neuro-opthamologist I saw was a little more patient with me. I told him that my blepherospasaming was active during sleep. He told me this removes blepherospasams as a diagnosis since blepherospasams can NOT be active during sleep by medical definition. This last neuro-opthamologist referred me to a neurologist.


The questioning of the diagnosis of blepherospasams is what got me to the neurologist. At this point I am experiencing other symptoms beyond breathing problems. Oddly enough the Breathing problems, Heart palpitation, Racing heart, Agitation, Swallowing difficulties, General feeling of malaise and constipation symptoms subside.

I begin to develop the following symptoms that I detailed for my neurologist so he knows exactly what I am feeling because I don't want him to miss anything.

On 12/10/2006 I report the following symptoms to my neuro.
1. Pain in my face (teeth, jaw and chin that comes and goes)
2. Very tense check muscles (relived during sleep)
3. Pain at base of skull (back side of my neck when sleeping face down) 4. Numb top and bottom lips
5. Tongue that feels like it spasaming and moving to back of throat (tip feels like it burned, sides of tongue feel stiff/tight)
6. Blepherospasams

I again go on travel for my work for two weeks and deal with the "blepherospasams."

My neuro sends me in for a Brain MRI and brain MRA. He suspects I have hemi-facial spasms instead of blepherospasams. He seems unconcerned with any of the other symptoms I reported other than the blepherospasams. Both brain MRI and brain MRA come back clean. Actually the radiologist report on both read unremarkable. He makes no mention of lesions or anything else. But honestly I did not ask. My neuro also gives me some in office test. Makes me walk, watches my pupils, stand, sit. He also administers an EEG. It comes back clean. This is a bunch of wires on my head. My neuro says that it is also clean! He tells me it is anxiety related. But my HFS may be real. He never mentions A**, M* or Parkinson's. In fact it’s like pulling teeth with this guy. You have to ask directly because he does not give straight responses.

I again go on travel for my work for two weeks and deal with the "HFS."
I get back home for two weeks and again go on travel.
This time I've got 20 hour days under intense working conditions. I am eating very badly and sporadically with little water sitting down all day long. On the last day on travel I develop new symptoms and end up in the ER. The Dr. at the ER gives me Ativan. Two days after arriving home I developed the following symptoms:

1. Inability to deal with emotional situations
2. Weakness in both biceps
3. Headaches after awakening
4. Inability to sleep face down
5. Get cold
6. Dizziness
7. Feeling of being very tired and not wanting to get out of bed
8. Some slight drooling with numb lips
9. Pain at top of skull
10. Hiccups...something that I rarely experienced in my life
11. Nausea that has recently subsided.
12. Trembling

I come back home and report these symptoms to my neuro. He gives me Xanax.

At this point it is also time for my follow up with my internist. I begin to develop further new symptoms. I tell my internist who insist I see a neurologist immediately. I report the following symptoms to the new neurologist.

1. Tight forearms
2. Tight quadriceps
3. Tight calves
4. Feeling of weak legs but no actual weakness, slightly weaker on left leg with knee pain
5. Fasciculation widespread throughout body (but mostly in forearms, biceps, calves & quadriceps at a very low rate)
6. Twitching on various muscles of the body (but mostly in quadriceps at a very low rate)
7. General feeling of malaise
8. Able to exercise to a high degree if required
9. Feeling of being very tired and not wanting to get out of bed
10. Some slight drooling with numb lips
11. Muscle Pain
12. Burning muscles
13. Trembling (body, hand, legs)
14. Lower back pain

He gives me the standard neurologist test: Stand, walk, reflex test, scrape sole of foot, look and eye etc. He also administered an EMG and a test where he inserts a needle into several muscles on various muscles on both sides of my body. He says the EMG is very steady and with no abnormalities. He says I have tics that are made worst by stress. He also says I "may" be developing something called Cramp Fasciculation Syndrome. This second neuro puts me on Klonopin which by the way works great but is addictive. I try it for a week but I need to get off this stuff and learn how to deal with this problem if in fact it is Cramp Fasciculation Syndrome.

Now, I am a mess. I have many of the symptoms I originally reported to my GP plus many others I developed over time. Not all at the same time but many. But the last 14 symptoms are the ones that are killing me spiritually and emotionally. I can swallow not having A** or Parkinson’s but M* is still on my mind. Both my neurologist have totally dismissed M*, A** and Parkinson's. But I can't easily dismiss M*. I would like to think that this is all actually anxiety but I have made a serious effort to relax and think this stuff should be gone after three weeks of taking it easy at work but it is still going on. It has taken the effort of writing this post to make me realize how much I have been killing myself for this Job the past 2+ years.

Now, my first neurologist wants to send me to a Movement Disorder Specialist because apparently I am beyond his help. I need to know that I don't have one of these diseases. Especially M* since it is the most probable by symptoms for me. So far I have seen
1. One GP
2. One Cardiologist
3. One Internist
4. Five Ophthalmologist
5. Four Neuro-Opthamologist
6. Two Neurologist
7. Six ER doctors

I have had at least
1. Two brain MRIs
2. One Brain MRA
3. One EMG
4 Six CBC test
5. Five Chest x Rays
6. Four Brain CT-Scans
7. Two Lyme test
8. One Anti SSA/SSB
9. Two Sleep Study test
10. Two Breathing test

After all this is it possible someone failed to make the correct neurological diagnosis or is it more likely that I have put myself into a full-time anxiety frenzy that now seems normal too me since I have been doing this for so long now? It is hard to look at my bicep and watch it twitch then cramp and think its just stress or anxiety related. Then it goes to my Hamstring and watch it do the same thing. However every test I have had keeps coming back clean. No I have not had a CSF test or evoked potential test. My two neurologists don't seem to even be concerned with mentioning these as a option. What the hell is going on with my body! Even the chiropractor I see says its anxiety. Well, I just have a difficult time coming to terms with the possibility that face numbness, body wide tingling, body wide twitches, body wide fasciculation’s, cramping, muscle pain etc is just anxiety. I feel weaker but I don't seem to have lost any strength or weight. My wife said I am different now after my last trip. The truth is I just don't feel I have the energy to engage in anything other that reading up on the symptoms I am feeling.


Someone else posted the following symptom list and I agree that I also feel the same way. The list is by mrs. cr. http://nextination.com/aboutbfs/forums/ ... =breathing

I have edited the list to show what I feel. It is remarkably similar!
Body

Chronic Fatigue
I feel you can’t relax.
Feeling cold or chilled
Decreased sex drive
Muscle twitching
Neck, back, shoulder pain, tightness/stiffness
No energy, feeling lethargic, tired
Numbness or tingling in hands, feet, face, head,
Persistent muscle tension, stiffness
Sore or tight scalp or back of the neck
Startle easily
Trembling or shaking
Sudden urge to go to the washroom
Weak legs, arms, or muscles
Fears
Afraid of being trapped in a place with no exits
Constant feeling of being overwhelmed.
Fear of being in public
Fear of dying
Fear of losing control
Fear of impending doom
Fear of making mistakes or making a fool of yourself to others
Fear that you are losing your mind
Fears about irrational things, objects, circumstances, or situations
Fears of going crazy, of dying, of impending doom, of normal things, unusual feelings and emotions, unusually frightening thoughts or feelings
Heightened self awareness, or self-consciousness
Need to find nearest washrooms before you can feel comfortable

Head
Head, neck or shoulder pain, tightness/stiffness
Giddiness
Shooting pains in the face
When you close your eyes you feel like are beginning to, or will, float upwards
Sore jaw that feels like a tooth ache
TMJ (Temporo-Mandibular Joint) - clenching of the jaw or grinding of the teeth

Hearing
Nothing!

Mind
Desensitization, depersonalization
Fear of going crazy
Fear of losing control
Fear of impending doom
Feelings of unreality
Frequent feeling of being overwhelmed, or that there is just too much to handle or do
Having difficulty concentrating
Obsession about sensations or getting better
Racing thoughts, Rapid thinking
Repetitive thinking or incessant ‘mind chatter’
Underlying anxiety, apprehension, or fear

Mood
Depression
Feeling down in the dumps
Feeling like things are unreal or dreamlike
Frequently feel like crying for no apparent reason
Have no feelings about things you used to
Underlying anxiety, apprehension, or fear
You feel like you are under pressure all the time

Sight
Dry, watery or itchy eyes
Eyes sensitive to light
floaters
Flashing lights when eyes are closed


Touch
Numbness
Pain
Tingling, pins and needles feelings

(THESE SYMPTOMS DESCRIBE ME!!)

Other symptoms are described as:
Being like a hypochondriac, muscle twinges, worry all the time, tingles, gagging, tightness in the chest, tongue twitches, shaky, heart beat problems, head tingles, tingling in arms and legs, and so many more.
In addition to these symptoms, you may also find yourself worrying compulsively about:
• Having a heart attack
• Having a serious undetected illness
• Dying prematurely
• Going insane or losing your mind
• Losing control
• Not breathing properly
• Choking or suffocating
• Being alone



Please help!


That was back then and my symptoms have come and gone. But I am still here.
Zekebcfs
"Keep them busy busy busy, back on the farm with the other animals." We are kept so busy with business (or busyness) that we do not understand or participate in the decisions and events that will crucially affect our future.
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zekebcfs
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