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15440293 tn?1440620337

I Am TERRIFIED I Have MS or ALS.. Help


I am Nico, I am a 25 year old male who has been suffering from an array of symptoms since I was 17 years old. I am 5ft 8" and I weigh 235lbs ( Ive gained over 60lbs in the last year and a half) I have had a Panic Disorder, Generalized Anxiety Disorder, and dizziness (not vertigo) problem since 17 (nearly 8 years now). In 2009 I got into a car accident and fractured my frontal right sinus cavity and had to do a reconstructive surgery. In this accident I also got a concussion and was in shock and also unconscious for about an hour. The last few years my health has gradually been declining and my quality of life has gotten so low. I have seen a TBI specialist, a Neurologist, a Cardiac Electrophysiologist, a Psychologist, and a Psychiatrist for Psychotropic medication management. Here are the symptoms I have experienced daily or within this time frame:

*Panic Attacks
*Constant Fear/Adrenaline Rushes
*Always Tired
*No Sex Drive
*Easily Overstimulated (sensory Overload)
*Non-Rotational Dizziness
*Neck Pain
*Cervicogenic Dizziness
*Heart Arrhythmia (PVC's, and Sinus and or Paroxysmal Tachycardia)
*Sensitive to Sounds (Always have to wear earplugs)
*Sensitivity to Light (always wear sunglasses)
*Off balance
*Slight body tremors
*Chronic Neck and Muscle tension in Occipital and Trapezius Muscles
*Startled by normal every day sounds (occasionally)
*Frequent muscle twitching (Eyelids, Stomach and Diapragm, temple, legs)
*I can't climb a flight of stairs without feeling exhausted (2years ago I used to hit the gym a lot)
*Always Feel Like I Am Dying or That I Have Some Serious Terminal Illness
*Elevated Blood Pressure
**Obstructive Sleep Apnea (Not using CPAP)
*Brain Fog Always
*Shortness of Breath
*Lump In Throat
* Every few months a random mouth and tongue become paralyzed for less than a minute when I eat then I get
Confused afterwards or Panic attack.

Here are the Medications I take everyday:

Clonazepam (Klonopin) .75Mg
Diazepam (Valium) 5MG as or if needed
Aspirin 325MG

Here are TESTS performed in the last 7 years I will put a number next to it to indicate how many times I've had it done

* Head/Brain CT Scan   3-4 Times
* Brain MRI                    4-5 Times
* Neck/Throat MRI        2 Times
*Chest X-Ray              10+ Times
*EKG                           20+ Times
*Implanted Cardiac Monitor 4/01/2014(Still Implanted)
*EEG                           3-4 Times
*Basic Neurological Function Test            10+Times
*Echocardiogram Stress Test                   2 Times
*Echocardiogram                                     1 Time
*Stress Test                                              2 Times
*Transcranial Doppler Ultrasound  (testing for artery compression or insufficiency) 1 Time
*Neuropysch Testing  (TBI and cognitive function)          2 Times
*Blood Tests/Urinalysis   >CBC>CMP>CRP>Troponin>Metanephrines>Cortisol>Lipid Panel>Heavy Metal Compounds>Catecholamines>Thyroid Levels> and some others I can't remember.
*Pulmonary Lung Function Test (shortness of Breath)    1 Time
*Overnight Sleep Studies (In Lab)                  9 Times
*Cervical Trigger Point Injections (Marcaine/Lidocaine)      Done Monthly

Other than that I see weekly providers, a Physical Therapist for my neck, a Psychologist for my Severe Anxiety Disorder and Panic Disorder, My Neurologist to do my cervical trigger point injections, and my TBI doctor to kind of oversee everything and help me solve whats causing my symptoms.

Any Suggestions would be much appreciated. I have had this fear and notion that I have Multiple Sclerosis (MS) as the cause for everything or even constant TIA's (Mini Strokes).... IDK... I have a 1 and half year old son to take care of and I can't even take care of myself, I am scared 24/7 of dying and I am not living life.... :/ any advice would help please

Thank You and God Bless

15 Responses
5112396 tn?1378017983
Everything you've mentioned is easily attributable to conditions you already know you're dealing with.

Have you tried any behaviour modification therapy like CBT? This can often be helpful with things like health anxiety. There are also anti-depressants of the SNRI class that have an anxiety modifying component.
667078 tn?1316000935
Does not sound like MS to me.

14631020 tn?1436545476
Wow!  You are really going through a lot.  I hope you find some help and answers to your questions.

15464668 tn?1440718243
Seems more like anxiety and panic attacks all the time.  Almost as tho any little thing can trigger it.
987762 tn?1331027953
Hi and welcome,

I understand that you are afraid you have MS or ALS but haven't mentioned anything being neurologically abnormal, nothing that could be clinically suggestive or consistent with either despite all the tests you've had. In truth what you've mentioned is highly suggestive of someone dealing with severe 'health anxiety' but with additional obesity related medical issues.

Your weight gain and resulting associate health issues, may or may not be related to you taking Clonazepam (Klonopin), which is associated with increased appetite as well as some of the other issues you mention that 'could also be' adverse medication side effects.  

I would highly recommend you make an appointment with a psychiatrist to discuss alternative treatment options, specifically because despite the medication and therapy sessions, your mental health issues have continued to escalate, and could be experiencing medication side effects that are negatively effecting your quality of life and in turn, worsening your health anxiety fears and behaviours.

15440293 tn?1440620337
I have had these symptoms for about 7-9 years now and I have only been obese for about a year and a half. As for Neurological, I stated I experience frequent daily brain fog, cognitive dysfunction, overstimulation to stimuli (Sensory Overload), Off balance frequently, and lightheaded even at rare moments of not having anxiety.

I agree on the Klonopin I believe I am experiencing a Paradoxical effect with tolerance withdrawal..... Since they are generally meant for short term use and I have been on it for about 2 years...

Im just worried more so about having MS than anything, I have not done Lumbar Puncture Test of my (CSF), Nerve Conduction Velocity testing, or evoked potential testings.... however they have found no lesions or abnormalities on my Myelin, but they've only looked at that on the brain, not spinal cord.  I also agree and know from first hand and medical knowledge that Anxiety and Panic causes vast Physical symptoms especially with Hypochondriasis (which I Have). But as I know, most people who have Multiple Sclerosis will always have different progression, manifestation, and prognosis associated with the disease, and I also know a lot of my symptoms can fall under the category of MS symptoms.
987762 tn?1331027953
When i said "you are afraid you have MS or ALS but haven't mentioned anything being neurologically abnormal, nothing that could be clinically suggestive or consistent with either despite all the tests you've had."

I was referring to you not mentioning any 'objective test evidence of neurological abnormality' which would be suggestive and consistent with a neurological condition like MS or ALS........clinically suggestive/consistent evidence would be things like demyelinating lesions or developing additional lesions on your 5 brain MRI's and or cervical spinal MRI's, abnormal EVP's, abnormal EEG's, abnormal Neuropysch tests suggestive/consistent with the cognitive issues associated with MS, abnormal neurological signs on your 10 Neurological Function Test over the years etc. etc.

'Symptoms' are not abnormal objective clinical or test evidence, you mention experiencing "brain fog, cognitive dysfunction, overstimulation to stimuli (Sensory Overload), Off balance frequently, and lightheaded at rare moments of not having anxiety." but those 'symptoms' are commonly associated with many other non neurological medical issues too, and are not actually objective neurological abnormalities suggestive or consistent with either MS or ALS.  

"Cervicogenic dizziness often occurs as a result of whiplash or head injury and is often seen in conjunction with brain injury or injury to the inner ear.4,7 It is often difficult to distinguish between cervicogenic dizziness and other medical problems. Cervicogenic dizziness that occurs in conjunction with brain injury or another form of dizziness will be more difficult to diagnose and treat. It is important to be patient while health care professionals sort through the problems and treat them in the most logical order."

Whilst you acknowledge you are living with "Hypochondriasis" (health anxiety), sustained head trauma in a car accident and are obese, it's totally unrealistic to totally ignore your pre-existing psychiatric issues, TBI resulting in dx cervicogenic-dizziness, obesity with it's commonly related health issues etc and instead focus your hypochondrias (health anxiety) on a medical issue you genuinely have no objective medical evidence or common symptoms of....      

I genuinely believe your mental health issues are in need of treatment review, health anxiety is often a difficult medical issue to treat, and you have additional medical issues that complicate things further but realistically if you are still dealing with extreme levels of anxiety about your health, your current treatment plan is ineffective and it would be in your best interest to discuss your treatment options with a psychiatrist.


ps 7-9 years rules out ALS life expectancy is 2-5 yrs and that also puts MS exstremely low on your causation list, simply because someone with MS will definitely have 'some' diagnostic lesion evidence in that time frame.
1831849 tn?1383228392
Hi NA -

Inspite of all that you are dealing with, nothinng jumps out at me and says MS. As has been mentioned here, everything you describe can be attributed to conditions you know you have.  On top of that, as JJ mentioned, there is no testing evidence of MS. After 7 years some evidence of MS would show up.

I would focus all of your resources on trying to get a handle on your panic and anxiety disorders.

15440293 tn?1440620337
Thank You for the advice and response, btw apologies for lack of mention but I am genuinely clinically diagnosed with:

Cervical Neuralgia
1 EEG showed Non Epileptic Seizures(2013)
Panic Disorder
Generalized Anxiety Disorder
Vertebral Artery Compression (not constant) on head rotation
Cognitive Dysfunction (TBI)
Cervicogenic Dizziness and Migraine
Obstructive Sleep Apnea
Heart Arrythmia (Frequent Pvcs and Benign Paroxysmal Tachycardia)
Syncope with unknown origin

I did not state but I see a Neurologist regularly who is helping me get to the bottom of this. I see an ENT dr. today,` I also see another Endocrinologist soon to explore the adrenal and other glands, and I see a neuro-optometrist to explore my constant eye/headpressure and my visual-percuptual-spatial dysfunction... it is frustrating I've been seeking relief from Drs for 3 years now. before that I just suffered through all my symptoms, till they became too much to deal with.

Thank You
987762 tn?1331027953
No worries but you are still fearfully focusing on medical conditions (MS) that you have no medical evidence of, and whilst i understand you believe your 'symptoms' are MS related, you are overlooking that your symptoms are perfectly explained by your pre-existing dx medical conditions....

You would be much better off focusing on the multiple psychiatric conditions you have been diagnosed with "Non Epileptic Seizures (NEAD), Panic Disorder, Generalized Anxiety Disorder" as well as your acknowledged Hypochondria (health anxiety) so that you are fully aware of the associated symptoms, triggers, behaviour patterns, treatments etc

"Many people with NEAD complain of other symptoms. These symptoms can have causes similar to those of NEAs.

These symptoms can include:

• Numbness • Poor concentration
• Tingling • Memory problems
• Fatigue • Worry
• Pain • Panic
• Headache • Anger
• Dizziness • Frustration
• Blurred vision • Low mood
• Bladder problems • Trouble sleeping
• Bowel problems • Speech problems
• Limb weakness or paralysis • Feeling distant or unreal

15440293 tn?1440620337
So I had my appointment today with the ENT Doctor. He knows my past symptoms and tests I have had done, he wants to repeat an ECOG test for the inner ear as well as a .2mm CT Scan of my middle and inner ear. Other than that since I have had a full vestibular workup in the past, if these tests come back negative he feels that they are definitely of a Neurological/Cervicogenic Origin. Fingers crossed, also I get results back next week for Cortisol and Catecholamines test looking for Adrenal Insufficiency or possibly Cushings Syndrome.

The ENT Doctor did verify objectively that my balance is off tremendously and that I am indeed dizzy. He also said that Benzodiazepines, Clonazepam specifically actually directly effect the inner ears by acting a suppressant to them (He said it actually shuts both of them down) and for someone with my symptoms already from the cervicogenic dizziness and TBI that I should definitely look towards tapering/and Switching to a less severe shorter half life benzo.... I didn't know this at all..... so I will talk to my TBI Specialist and Psychiatrist about possibly a new SSRI or SSNRI as well as starting my Amantydine and Depikote.....

Next step if no answers is to see a Neurophysiologist in Seattle, WA @ Swedish Hospitals
15518998 tn?1441110825
Good morning  Nico,
My name is Lisa and I am brand new to this world of medhelp so please bear with me! You seem to have been suffering for quite a while and need a break. I will give you what little advice I can, which has worked for me. I started experiencing many neurological symptoms about two years ago. I had multiple MRI of the brain which did show some lesions..."but not enough for a definitive diagnosis of MS". Please know that there are many people who do have MS that do not have lesions. Every single person presents differently and every single doctor has a different answer. I relentlessly searched for answers and saw numerous specialists,all of which agreed that something was going on..just not sure what. Well that certainly wasn't helpful. I finally went to an opthamologist who noticed some issues with my optic nerves in both eyes. He then set me up with a neuro-opthamologist who was the most amazing doctor I have ever met. I live in little Rhode Island so we only have one of these specialty doctors. It took about 7 months to finally be seen...but was it worth the wait. This doctor spent 4 hours with me and did testing I never knew existed. In the end he sat by my side and held my hand. He quietly told me I have optic neuritis in both eyes and along with the brain lesions and neurological symptoms it was a definitive diagnosis of MS. I think he was waiting for me to cry but I was just filled with relief...I just needed a diagnosis. So..my advice to you is to get to a qualified opthamologist who can evaluate your optic nerves,and if need be after that find yourself a neuro-opthamologist. My thoughts are with you, as this is a very difficult time. Please rest and take care.
15440293 tn?1440620337
I am scheduled to see an Ophthalmologist in the next two weeks, and I am scheduled with a Neuro-Opthamologist in October I believe. My eyesight gets blurry a lot and I have black specs in my line of vision, or floaters as their called. But I agree with you, if they are not specifically looking for lesions they could miss them or they just might not even be present in MS cases..

Lately I have been getting tons of muscle twitching all over my body like my eyes, my abdomen which looks like a baby is kicking its feet out (Im a male), legs, arms, and fingers. It doesn't hurt just quite annoying.

Hope to get back on top of life, my Anxiety feels out of control and is holding me back from a lot, including being a good father, and family member or an asset to society.... :/
5112396 tn?1378017983

"they just might not even be present in MS cases.. " and "Please know that there are many people who do have MS that do not have lesions."


There is NO MS without lesions. Whether or not they're found, if a person has MS, they are there. The S stands for sclerosis = scars = lesions. Damage occurs, causing inflammation, leaving lesions as evidence of current or past damage.

Again, Nico, nothing stands out as related to a condition like MS. Please focus on your anxiety issues as you wait for these upcoming appointments. That comes across as by far your biggest day-to-day challenge.
15439126 tn?1444443163
In a typical week, how many 5 mg diazepam (valium) tablets do you take?   If you're taking them mostly for anxiety, I urge that you inquire about switching to oxazepam (serax) instead (I've found this med far more 'on target' than diazepam for anxiety relief, and with fewer side effects).

To reduce your agitation/anxiety:  Have you tried:  calming routines? (puzzle books work well with me); meditation like quiet breaks? (20-22 minutes sets me up nicely for riding over the day's rough spots)
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