MS symptoms for 3 1/2 years

[terrijean]

Hello,

My initial onset of symptoms began 3 1/2 years ago at which time I started with a severe right-sided facial pain lasting for seconds like a toothache.  I went to my dentist at that time and he said the tooth had a hole in it and needed to be removed.  At the time I was having the tooth removed even after Novocaine, I had excruciating pain as my dentist started prying my tooth from my lower jaw.

Several days after this, ALL everything broke loose.  As I recall, it seemed to start with my vision--as if it was doubled and blurred.  Then after this, I had paresthesias extremely worse on my right side from my face down to my foot with difficulty with speech, cognitive function etc. I had a feeling of almost not being in my own body or euphoric.  

I am a medical transcriptionist for a local hospital and when I began working on Monday morning, I felt as if I could not correlate  my hands with my eyes etc. and started becoming panicky; I knew something was wrong.  I thought maybe it was a stroke or something.

I went to my PMD and he took me off work with "peripheral paresthesias"; off for 1 1/2 months.  CAT scan - negative.

I then started with a local neurologist who said "it could be stress" related.  Came to Cleveland Clinic to rule out a stroke and "he said it could be stress related".  MRI - negative.  VEPs negative.  EMGs negative.  Spinal tap - negative.

I have been on Neurontin which has thankfully taken away the TN and complete right sided numbness but still left with multiple other symptoms and no DX.  Should I come to Mellen for a DX?  I am now 44/declining..

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.    
   Your story is very complex and there is a lot of data that I do not have.  I am glad the neurontin is working for the pain (Trigeminal neuralgia?).  From what you describe, you evaluation has been good (MRI, VEP, EMG, LP).  I think multiple sclerosis is unlikely given the results you describe.  If you have not had a MRI of your cervical spine with contrast, I would also suggest this test.  I would recommend that you follow-up with your Cleveland Clinic neurologist to address your remaining symptoms (not mentioned, which symptoms remain).
I hope this has been helpful.

[JCmcc]

Terrijean,
    I am sorry to read about your various symptoms. The first thing to address in answering possible Multiple Sclerosis is that it is a common denominator that most attacks first experienced with MS patients come during or directly after a stressful event, for example, the death of a loved one, social persecution, loss of a job, giving birth, accidents, and so on. The situation with your tooth and with your facial pain are more than likely specific to your oral surgery and disease.
   The symptom you describe in your eye is more than likely what is commonly a presenting monophasic syndrome and it is called optic neuritis. Do you recall which sensation you experienced with the presumed parethesias? Speech and cognitive function are less common in MS, but do occur in some patients. The feeling that you experienced with being “out of body” has never been described to me and it may be asking you to look at other conditions. MS, however, can do many strange things.
Regarding your CTscan, you should be aware that MRI is considered a much better detector for conditions such as Multiple Sclerosis as it has more of an ability to look for punctuate lesions, that too, may be enhanced though unremarkable.
I do not want to give you the impression that I am among the many who blame Lyme disease for everything because it sadly can discredit the suggestion to people who truly may be suffering with this condition. Depending upon your locale you may want to look into this as a possible cause for what you are experiencing. An important consideration would be whether or not your symptoms wax and wan, rather than with MS, which generally has clear starts and stops. If your symptoms do not go away and all and simply get worse, one would consider a more progressive disease and LD can present this way as well.
Was your cervical spine studied under an MRI and did you have a lumbar puncture? It is possible that you may have had plaques on your brain and that they went away. This sequence occurs more than often in Multiple Sclerosis and other related conditions, such as LD.

Good Luck!
JCmcc.

This information is not meant to supplement your physician/s.

[JCmcc]

Apology. I should also mention that you may want to look into a condition known as myasthenia gravis, this could also cause the visual symptoms, et al.

[terrijean]

Regarding my post, no offense, but am looking for the medical advice from a medical professional or MD.

I am directing this to you JCMCC because you made rather direct medical answers to my medical questions.

In regards to my "tooth pain", it was not actually tooth pain after all; it is called TN or trigeminal neuralgia which a small percentage of patients' I have read have this first initial onset of.  

And yes, not only was the tooth extraction STRESSFUL situation but also I was under tremendous personal and financial stress.

All of my initial severe symptoms at initial onset lasted for 8 weeks but I was left with permanent sequelae of some symptoms between attacks.

I have read and had posts from others on different sites that everybody's symptoms can be different and no one is alike by any means for any disease.

Trigeminal neuralgia in and of itself medical documentation states is a very painful disease and is not a toothache; that is just how it can be perceived at first from trial and error going to the dentist, tooth extractions etc.

I do not want to sound harsh, but I personally would not give any  
advice to anyone as you have done to rule in or out a disease for anyone on any forum.

I am seeking advice from a medical doctor on this forum in particular because I will be going to this center at the end of January.  I would, however, gladly like to hear from any others with similar problems as mine.  I, although, do appreciate your kindness JCMCC of acknowledgement on this forum.

terri

[terrijean]

Apology; I should have put my question directly to the DOCTOR, which I did leave blank........

[annlynn]

Hello, has anyone had MS symptoms that worsen every Spring and Fall?  Thanks

[patsy10]

I too have the symptoms you describe.  They have been present for 1.5 years.  My symptoms are all over...twitching, numbness, tingling, muscle pain, weakness.  My whole left side feels numb from the face to the foot,  but when I touch it I actually do have sensation.  My left leg even drags at times. I also have blurred vision and much, much more.  I have had spinal tap, MRI's (several), evoked potentials, EMG etc...All my tests have been completely normal. I've seen 4 neurologists.  All said not MS.  I finally went to the Mellen center 3 months ago and the doctor said of all the things I could have, MS was at the bottom of his list.  The doctors there told me right from the start I may not ever get an answer.  The doctors at the Mellen center are quite good.  I should have gone there right from the start instead of wasting my time seeing the other doctors.  It's very scary living with these symptoms with no answers.

Good luck

[terrijean]

Hi,

AnnLynn - My worst times are spring and especially SUMMER; but I do get some episodes in the fall too.  Usually when the snow comes or winter, I do pretty well until March or so.

Patsy10 - sorry to hear you have this problem also; the not knowing can be so detrimental a lot of the time.

I saw my PMD yesterday and he told me I need to start exercising, walking, eating right, taking multivitamin and B6, doing the alphabet ankle exercises 3 times a day to get my body back on track.

I totally agreed with him that I should get back to doing this.  I've had 6 ankle sprains with the last one being a good one just getting out of bed 1 1/2 months ago.  I cannot feel my legs below my knees and I will take a step, turn an ankle, and sometimes fall to the ground.  He told me if I do not strengthen my ankles that it could become disabling.

I myself at one time 1 1/2 years ago had purchased a total gym, a  membership at the local rec center and felt pretty good after I gained muscle and strength etc.  Then, I had a relapse and it all went downhill from there.

I hope someday we can all find the answers/diagnoses we are looking for.  Just knowing would be a release of stress for me and I'm sure all of us in limboland.

Terri

[JCmcc]

Hi,
   Please do not misunderstand me. I did no claim to be the doctor here. I am very educated and I will leave my personal profession, at that, silent.
   I have Lyme disease induced Multiple Sclerosis. I was misdiagnosed with MS at age 26 and knew, in my heart, that this was not right. Elisa, negative, as many of you know. I had to fight for myself. Lyme is diagnosed usually based on presentation, clincal history. I designed a pathology records system, which for me turned out to be 63 pages. In the end, after much fighting, I won. IGENEX was very positive that I had/have Lyme, the radiologist on my brain report said, possible Lyme or MS<-at least he was open.
    I am a good Catholic man. I am dedicated to doing anything I can to assist and I pray that this is not mistaken. I want to be an example to be, most especially those diagnosed with MS, that there can always be a better answer that exists but is not epistemologically obvious<-I knew nothing of Lyme disease before I read my Brain MRI. When I asked my physician (and this was in Connecticut where I was a college student) he simply looked at me, "Absolutely not. You have MS, John. You are from Washington, not from here. You have not one, not two, but multiple lesions." Friends, please take not that he was a general MD and most not qualified to diagnose MS.
    So, for those who are terrified, those are are being mishandled and those who just want to learn. I have decided to post my brain and c-spine MRI on here. To show that Lyme disease can present and look just like MS. Please note that I went from really bad to being asymptomatic. My Lyme diagosis has been upheld by two leading Lyme physicians one who went to YALE and the other UW.
    I hope I was helpful to anyone here. This is all that I wanted.

Peace,
John.

MRIS.

BRAIN:
FINDINGS:
There is no MRI evidence of midline shift or mass effect. Multiple round to ovoid foci of increased T2 weighted signal are noted in the periventricular and deep white matter of both cerebral hemispheres. Some foci within the centrum semi-ovale are oriented perpendicular to the plane of the corpus callosum and cingulate gyrus, suspicious for MS plaques. More ill-defined increased T2 weighted signal is noted in the periventricular white matter. Faint nodular areas of increased T2 weighted signal are noted within the corpus callosum. A small, 3-4 mm ovoid focus of increased T2 weighted signal is seen within the posterior aspect of the left middle cerebellar peduncle.
After IV contrast, at least five of the presumed plaques appear to enhance, the largest seen in the right frontal white matter, measuring 8 mm in maximum AP dimension.
Normal signal void is demonstrated in the major vasculature at the base of the brain. Visualized paranasal sinuses appear clear.  

IMPRESSION:
Multiple round to ovoid foci of increased T2 weighted signal in the periventricular and deep white matter of both cerebral hemispheres, as well as within the left middle cerebellar peduncle and corpus callosum. Several lesions appear to enhance after IV contrast. Findings are non-specific, but are suspicious for MS plaques. Other etiologies, such as Vasculitis or Lyme disease, could produce similar findings. Clinical correlation advised.

CERVICAL SPINE:
FINDINGS:
The bone marrow signal appears well maintained. There is reversal of normal cervical lordosis. Disc space heights appear well maintained. Not acute verterbral body compression fracture is demonstrated. The carniocervical junction appears unremarkable.
Saggital STIR sequence shows extensive signal abnormality within the cervical spinal cord, throughout the entire cervical spine. No cord compression is demonstrated. The neural canal regions appear ample in size.
Gladolinium-enhanced imaging shows no abnormal enhancement.

IMPRESSION:
Extensive areas of hyperintense signal abnormality within the cervical spinal cord, most consistent with a demyelinating process. No enhancement was demonstrated. Please see report from MRI of the brain.

[JCmcc]

Absolutely Carol and as I am not personally happy with Lymenet. I will always send people that way.

[JCmcc]

I believe that I am right that Lyme can do any of the following?

DEFINITIONS OF SYMPTOMS PERTAINING TO LYME DISEASE (General Symptoms)
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Translated into Lay English
by ***



o Nose Tingling
o Neck Stiffness
o Neck Pain
o Jaw Pain
o Jaw Stiffness
o Jaw Cramping
o Lock Jaw (Momentary)
o Sore throat
o Clearing throat
o Phlegm (Chronic)
o Hoarseness
o Runny nose
o Decreased Hearing
o Plugged Ears
o Buzzing in Ears
o Pain in Ears
o Sound Oversensitivity
o Ringing in Ears
o Popping in Ears
o Eye Floaters
o Eye Pain (In)
o Eye Pain (Around)
o Eye Pain (Behind)
o Blurred Vision
o Double Vision
o Vision Loss
o Peripheral Waves (Eyes)
o Phantom Images (Eyes)
o Flashing lights (Eyes)
o Light Sensitivity (Eyes)
o Hair Loss
o Shortness of Breath
o Thick Speech
o Slurred Speech
o Slow Speech
o Stammering Speech
o Dementia
o Diarrhea
o Constipation
o Difficulty Swallowing
o Drooling
o Short Term Memory Loss
o Long Term Memory Loss
o Clumsiness
o Headache
o Disorientation
o Loss of Sex Drive
o Sexual Dysfunction
o Bladder Dysfunction
o Bowel Dysfunction
o Fever (Recurring)
o Infections (Recurring)
o Low Temperature
o Migrating Pain
o Menstral Pain/Irregular
o Breast Pain/Discharge
o Upset Stomach
o Nausea
o Bone pain
o Joint pain
o Stiffness (Joints)
o Stiffness (Extremities)
o Chest pain
o Muscle pain
o Spasms
o Cramps
o Night sweats
o Day sweats
o Unexplained Chills
o Heart Palpitations  
o Fatigue
o Weakness (Limbs)
o Partial Paralysis (Limbs)
o Lymph Node Pain
o Lymph Node Swelling
o Dental Pain (Unexplained)
o Pain (generalized)
o Poor balance
o Increased Motion Sickness
o Lightheadedness
o Wooziness
o Heavy Headedness
o Insomnia
o Depression
o Irritability
o Mood swings
o Anxiety
o Weight Gain
o Weight Loss
o Testicular pain
o Pelvic pain
o Increased Alcohol Affect
o Worse hangover
o Allergy Sensitivity
o Chemical Sensitivity
o Unidentified skin blotches or freckles



SYMPTOMS REQUIRING CLEAR DEFINITION
(Other Symptoms)
(Definitions Below)
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• Internal Vibration
• Pruritis
• Erythema Migrans
• Maculopapular Lesion/s
• Paresthesias
• Numbness
• Bell’s Palsy
• Vertigo
• Burning
• Heat Patches
• Stabbing Pain
• Shooting Pain
• Lhermitte’s Sign
• Short Term Memory Loss
• Long Term Memory Loss
• Head Pressure
• Lesions/Plaques (Brain)
• Lesions/Plaques (Spine)
• Twitching
• Fasculations
• Interstitial Cystitis
• Sphincter Dyssynergia
• Carpal Tunnel Syndrome
• GERD
• Malaise
• Gait
• Ataxia
• Sleep Apnea
• Atrophy
• Energy (Nocturnal)
• Spasticity
• Tremor
• Rigidity
• Bradykinesia
• Myoclonic Jerking
• Clonus
• Masking
• Micrographia
• Dysphagia


Internal Vibration: -Term is self explanatory. Refers to a non-painful sensation within the internal body that can present it self anywhere within or have a mass internal effect. The sensation can be described as an internal vibration, flurry, rain storm, to name few. Symptom is non-specific.

Pruritus/ani: -Itching is a symptom we have all experienced but cannot easily describe or define. It is a peculiarly uncomfortable skin sensation. That much is certain. It may feel as if something is crawling on (or in) your skin. Itching can be diffuse (generalized) or localized -- all over or confined to a specific spot -- and there are many causes of diffuse and localized itching. Perhaps the best definition of itching is by the response it evokes -- it is a feeling that makes you want to scratch.

Erythema Migrans: - Noted as the “Bull’s Eye Rash” which is specific to Lyme disease. It appears like a Bull’s Eye and may or may not be at the site of the tick bite. Lest than 15% of people infected with this condition recall a rash. There are other non-specific rashes and skin lesions that are believed to have direct correlation to this etiology.

Maculopapular Lesion: -Noted in several cases, patient can have one to many. They appear dark red and are generally rectangular. They may or may not be associated with pruritis.

Paresthesias: -Abnormal nerve sensations such as pins-and-needles, tingling, burning, prickling or similar feelings are all known as "parethesias". They usually result from nerve damage due to pressure (such as a pinched nerve), entrapment, or diseases. Continued nerve damage can lead to numbness.  Paresthesias can affect various parts of the body. Hands, fingers, and feet are common sites but all are possibilities. Afflictions of specific nerves or spinal nerves can also cause parethesias in particular skin areas of the body.

Numbness: -Deprived of the power to feel or move normally. A general loss of feeling or sensation that can be topical or complete. Can effect any part of the body.

Bell’s Palsy: -Partial facial paralysis from facial nerve damage. Bell's palsy is a form of facial paralysis resulting from damage to the 7th (facial) cranial nerve. This same condition can exist within the stomach region.

Vertigo: -Feeling that the room or person is moving or spinning. The person can also experience sensations that indicate altitudinous changes, i.e. drops/climbs. Vertigo is the sensation that the room is moving or spinning, or that the person is moving or spinning within the environment. The term "dizziness" is often used for milder feelings of lightheadedness, but this word needs to be distinguished from symptoms such as balance difficulty, fainting, or general weakness. True dizziness is a lightheadedness or a sensation that you are about to faint. True vertigo requires the sensation of movement. Any dizziness or vertigo symptom needs prompt professional medical advice.

Burning: -Sensations that feel like burning in different parts of the body. It varies from mild and benign to extreme. It is a part of parethesias.

Heat patches: -A part of parethesias. A sensation of hot spots in different areas of the body.

Stabbing pain/Shooting pain: -A part of parethesias, self explanatory.

Lhermitte’s Sign: -Lhermitte's symptom is that of an electrical sensation in the spine or limbs on neck flexion. It can also cause buzzing patches throughout the limbs and or face.
Pressure in Head: -A sensation of “water on the brain” and pressure that is variable in affectation.

White Matter Lesions: -Plaques within the brain or spinal cord that are demyelinating. They are generally non-specific and have certain evidences that specify them more clearly. Such as ovoid lesions that are periventricular are most commonly seen in multiple sclerosis and Lyme disease.

Twitching/Fasciculations: -There are benign fasciculations that occur. Involuntary contraction of the muscle fibers innervated by a motor unit. Fasciculations can often by visualized and take the form of a muscle twitch or dimpling under the skin, but usually do not generate sufficient force to move a limb. Twitching is listed as an alternate name or description for symptom Twitches. For a medical symptom description of 'Twitching', the following symptom information may be relevant to the symptoms: Twitches (symptom). However, note that other causes of the symptom 'Twitching' may be possible.

Interstitial cystitis: -Interstitial cystitis (IC), one of the chronic pelvic pain disorders, is a condition resulting in recurring discomfort or pain in the bladder and the surrounding pelvic region. Interstitial cystitis is an odd disease that is difficult to diagnose. It causes pain and irritation to the bladder and pelvic area, and thereby causes various urination symptoms. Its cause is unclear, but may be autoimmune, or perhaps only some cases are autoimmune. Diagnosis of IC is often by ruling out all other possible causes of bladder symptoms. Confirmation of a diagnosis is difficult, and the most compelling evidence for diagnosis is often from surgery and biopsy, rather than any specific urine or blood tests.

External Sphincter Dyssynergia (DESD): -The sphincter externalizes itself creating what appears to be a sensation of a small soft golf ball size addition around the anus.

Carpal tunnel syndrome: -Hand or wrist problems; often from repetitive motion. Carpal tunnel syndrome occurs when tendons or ligaments in the wrist become enlarged, often from inflammation, after being aggravated. The narrowed tunnel of bones and ligaments in the wrist pinches the nerves that reach the fingers and the muscles at the base of the thumb.

GERD: -Reflux refers to the stomach acid rising up the "wrong way" back up the esophagus and sometimes into the mouth. When this occurs chronically it is probably caused by Gastroesophageal Reflux Disease (GERD). Symptoms typically include recurrent heartburn, reflux, and regurgitation, but may also include chest pain, hoarseness or swallowing difficulty; see also other symptoms of GERD. Diagnosis of GERD requires consideration of other possible underlying conditions causing symptoms, such as hiatal hernia.

Malaise: -General feelings of discomfort or being ill-at-ease.

Gait: -Difficulty walking, such as Ataxia.

Ataxia: -Clumsiness, loss of balance, inability to walk a straight line.

Sleep Apnea: -Sleep apnea is a common disorder in which breathing stops during sleep for 10 seconds or more, sometimes more than 300 times a night. The hallmark of the disorder is excessive daytime sleepiness and compromised quality of life, including significant social and emotional problems.

Atrophy: -General name for any wasting away of muscles or body tissue.

Myoclonic Jerking: -One may be jerked or jolted awake by an unknown cause. Action myoclonus is characterized by muscular jerking triggered or intensified by voluntary movement or even the intention to move. It may be made worse by attempts at precise, coordinated movements. Action myoclonus is the most disabling form of myoclonus and can affect the arms, legs, face, and even the voice. This type of myoclonus often is caused by brain damage that results from a lack of oxygen and blood flow to the brain when breathing or heartbeat is temporarily stopped.

Clonus: -Clonus is repetitive, rhythmic contractions of a muscle when attempting to hold it in a stretched state. It is a strong, deep tendon reflex that occurs when the central nervous system fails to inhibit it. Clonus is not the same thing as myoclonus, which is irregular and uncontrollable jerks of a muscle or group of muscles (see above).

Expressed Energy Nocturnal: A sensation that one wants to run while trying to fall asleep. All of these symptoms may be present due to restless leg syndrome.  Restless legs syndrome is a sensory-motor (movement) disorder characterized by uncomfortable sensations in the legs, which are worse during periods of inactivity or rest or while sitting or lying down. There is often a positive family history of the disorder.

Spasticity: -Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and may interfere with gait, movement, and speech.
Tremor: -Tremor in the hand or foot on one side of the body, or less commonly in the jaw or face. It appears as a "beating" or oscillating movement. Because the tremor usually appears when a person's muscles are relaxed, it is called "resting tremor." This means that the affected body part trembles when it is not doing work, and it usually subsides when a person begins an action. The tremor often spreads to the other side of the body as the disease progresses, but remains most apparent on the original side of occurrence.
Rigidity: -Rigidity, also called increased muscle tone, means stiffness or inflexibility of the muscles. Muscles normally stretch when they move, and then relax when they are at rest. In rigidity, the muscle tone of an affected limb is always stiff and does not relax, sometimes resulting in a decreased range of motion. For example, a person who has rigidity may not be able to swing his or her arms when walking because the muscles are too tight. Rigidity can cause pain and cramping.
Bradykinesia: -Bradykinesia is the phenomenon of a person experiencing slow movements. In addition to slow movements, a person with bradykinesia will probably also have incomplete movement, difficulty initiating movements and sudden stopping of ongoing movement. People who have bradykinesia may walk with short, shuffling steps (this is called festination). Bradykinesia and rigidity can occur in the facial muscles, reducing a person's range of facial expressions and resulting in a "mask-like" appearance.
Postural instability or impaired balance and coordination: -An experience of instability when standing or impaired balance and coordination. These symptoms, combined with other symptoms such as bradykinesia, increase the probability of falling. People with balance problems may have difficulty making turns or abrupt movements. They may go through periods of "freezing," which is when a person feels stuck to the ground and finds it difficult to start walking. The slowness and incompleteness of movement can also affect speaking and swallowing.
Micrographia: - small, cramped handwriting.
Masking: -Loss of facial expression.
Dysphagia: -Difficulty or pain when swallowing.

[annlynn]

Thank you Terrijean, Those are the same times that my symptoms worsen.  I'll be fine thru the very cold winter months...though I can't stand the cold! haha  But, every November, it hits me...(I live in Virginia) I wouldn't even want to try to name all of the symptoms. My legs are the biggest problem... But when it started with me about three years ago, my symptoms were similar to yours.  Very similar.  My husband took me to UVA and they ran all of the tests and found that I have a positive Babinski, blind spot in my right eye, and my magnesium and B-12 was very low. So, they diagnosed my with 'Migraine Syndrome' and the doctor said that she wouldn't be surprised if it 'turned into more.' ???  
Oh, and two weeks ago I was biten by a deer tick...left a big fat red ring. Still can't believe that...
Thank you for your help.  Hope that you are doing well!!
Thanks,
Ann

[terrijean]

Hi again AnnLynn:

Sorry to hear about the deer tick bite you had - scary.  I know what you mean about the cold; even if I feel pretty good in the winter, the cold bothers me to the bone with more stiffness etc.

This whole thing is, sit and wait, wait, wait.  It is very comforting knowing that we are not alone, when sometimes it feels as if we are.

My legs too are the most bothersome at this time with lack of feeling, neuropathy etc.  

Keep in touch and I will do the same.  Feel better!

terri

[JCmcc]

Hello,
  Sorry for the delay. Yes, I did see him. I believe that he is a dedicated physician who knows what he is doing. I do, however, feel that he is way over priced in comparison to other LDMDs.

Good Luck!
JCmcc.

[just don]

Do YOU realize that big red ring deal on your leg is diagnosic of active 'lyme disease" and resulting coinfections.  IF anyone tells you differently they are flat out lying OR are sadly mistaken.  DO your own research,,,you will need it!!!  You well may have been bitten before and this is your second exposure.

  I am NOT an expert,,only know this bit of info,,,please do your own research,for your OWN health.  This MUCH I know!!!  FIND an expert that says that big red ring (called an e---migrans(sp) ))) doesnt mean anything,,,dont think so...please research and find adequate treatment and a MD who 'specalizes' in it!!! Not your regular run of the mill doctor.