New Member With a Story and Questions

[Tiber2011]

Hi everyone,

I'm a newbie. I'm a 28 year-old male.

I started a new job in February of this year. I was coming from a stressful job where I'd feel chest pains and cold tingling in my arms and legs while sitting. I'd occasionally get a back spasm from the nasty office chairs we'd work in. I went to the ER 2x for chest pains.

In February, the new job transition was ugly, from both my management and employees and coworkers. I could get into the ugly details, but it was taking its toll silently. Not to mention I was getting up at 5:30 vs 9:30 am in the matter of one week.

One day driving home, I had a burning, hot, back spasm. Took Tylenol, back still ached days later.
A few days later, I was in bed, and had fasiculations all over my front and back of my torso. Got worried, went to see a physiatrist, said maybe a slipped disc, put me in physical therapy.

The therapist was a bodybuilder and tried to get my weak self into shape too fast with heavy exercises. He said I had a "weak core" and didn't have to stretch because I was "hypermobile."

I'd come home in pain, and the fasiculations would increase with working out. One day, I felt a horrible burning pain from both hamstrings behind my knees. I could hardly sit, stand or lie down. Felt like knvies when I'd move. I'd sleep on my back to keep my arms from fasiculating. Had a 3-part back MRI done, no issues found there.

I was beginning to feel pain all over, fasicualtions, tingling, never snappings in my feet, tight arms, shakiness, and insomnia.I read lots of stuff on-line and thought it may be ALS or MS. Went to a neuro - did a full blood work-up and a EMG-NCT and a brain scan on a brand-new closed machine.

Nothing found.

I felt some relief, but the fasicualtions and pain continued. I got worried and called neuros everywhere. Spent tons of time researching ALS and MS. Neuro #2 tested me for autonomic disorders, said I maybe had "Small Fiber Neuropathy" and never contacted me back and didn't want to work with me further.

I went to my opthamologist twice (I'm glaucoma suspect). He did retina detachment and other tests on me (I was seeing floaters and once a strobe effect upon waking up). He said "I would have seen signs of MS before in you" in July. However, I'm seeing a lot of floaters this week in addition to an optical migraine.

In May and June, my hands would feel pain and tingle, would have trouble walking, legs would get shaky, left leg would feel weak like it would give out, I couldn't stand for more than 3 minutes, I'd get fasics driving, or walking, especially the the calves and thighs.

Called a MS specialist who is in my area. She looked at my scans and tests and flat-out said "Who's telling you you have ALS or MS? You don't." Did more bloodwork, and I asked for a 2nd EMG-NVT. All came up clean. She said I have fibromyalgia and put me on 50 mg of Lyrica 2x a day.

Lyrica really helped. I could stand up better and longer. Removed a lot of pain. I started biking again. I saw a 4th neuro (made the appt. in my daze of calling neuros) and he said "Take MS off the table, you have Benign Fasiculation Syndrome and Fibro." I started PT again with a gentle therapist, and she said my hamstrings are super-tight and if I have a super-tight sciatic nerve, those could cause pain together.

3 weeks later, the fasics came back, plus with fuzzy, tingling sensations and random buzzing in certain muscles. I got nervous. Called back Neuro #3.
She examined me this week and said "Benign Fasicualtion Syndrome."

Now, my legs are fasicualting and get buzzy sensations. I was feeling them in my hands and toe before the visit, but not really now. I get random shot-lived buzzes if I rub the Achilles tendon with my leg stretched back while sitting, or sometimes when rubbing my wrist, I'll feel a little shock. I am also VERY skinny and pretty much skin and bones.

Since March, my right eyelid twitches, too. I haven't slept much at all, and I keep waking up.

I am trying to convince myself this is BFS and Fibro, but I just keep getting haunted by horrible diseases.

I work alone in an isolated area of my work, and when I do work with others, they treat me coldly, as do my bosses as well. My family thinks I'm nuts, my doctors all think I'm a hypochondriac, and I don't know what to think anymore.

I still feel fasics in my thighs, claves, upper arms and shoulders, plus random buzzings and tingles, esp. in the legs. My eyes this week have a lot of floaters, too.

Is it ALS? MS? BFS?
How many more doctors do I need to see?
How many more tests do I need?
It all blew up in March, but nothing showed up on any test.

[22cyclist]

Tiber2011: The good news is that you have had all of the testing for MS and you do not have it. You have had full MRIs of the brain and total spine, you have had peripheral nerves tested for ALS with EMG-NCT testing and they all came up negative. So, at this point I think you can be at rest that it is neither MS nor ALS. Your ophthalmologist told you they saw no signs of MS in your eyes, they mentioned possible retinal detachment, but that has nothing to do with MS, nor do floaters.

Benign Fasciculation Syndrome has been diagnosed, as well as fibromyalgia by two different neurologists. Fibro can come with tingling. BFS can cause your Fasciculations throughout your body, even around your eye. These are benign by nature and will not hurt you. It is associated with generalized fatigue, fasciculations of many muscles, muscle pain, anxiety, exercise intolerance, globus sensations, parasethesias, muscle cramping. Less common symptoms include: Hyperreflexia, muscle stiffness, itching, itching.

Since you have had so much testing, and at this point you have no prominent MS symptoms, and no other prominent ALS symptoms, I would try not to worry and get on with my life for now. If other symptoms develop, then go back to your favorite neurologist and follow up with them.

Stay away from Dr. Google for now. I think it is freaking you out a little too much. Let the doctors do their jobs and reassure you that you are OK right now.

Take care and let us know how you are doing, OK?

Lisa
Moderation Team

[Tiber2011]

Lisa, thank you for your patient and informative post.

I did become Dr. Google. Even today, I googled "Lyrica Floaters" to see if there's a connection.

All I got were lyrics to songs by a disco group called The Floaters

I actually know of more people who have ALS over MS. Due to this, my anxiety blew up and is still ongoing. My mother's friend was diagnosed 30 years ago in her 30s. She's now in a assistive living facility for 20+ years. I assume she has Primary Progressive.

I even asked neuro #4 (another MS specialist) if I should get another MRI. He said "no." And, he's a younger guy who's up-to-date and involved with research (I saw an 75 y.o neuro who told me "You're fine, kid." He scared me).

I ask myself "Was the brain MRI done properly? Is that back-scan showing everything? Could that burning patch I felt in March have been a lesion developing?"

My physiatrist the other day said the PT emailed him, stating I speak of MND and MS a lot. He told me to stop thinking about it; I don't have it. He, as well as the neuros, have seen MS patients before. I suppose I should listen to them.

However, this is my life.

Shoulder buzzes when typing - "Oh no! It's a sign" - go to Google - call dr

Eyes get more floaters (I have had them my whole life, I'm near-sighted, too) - "Oh no. Optic Neuritis!" - call and annoy the family ophthalmologist.

Little electric shock when rubbing Achillies tendon (usually goes away after a few rubs) - "Oh no! Call dr!"

I need a girlfriend. I think.

[22cyclist]

Thats OK. A girlfriend might help. But, for sure stay off of google for health related reasons for a while. Floaters have nothing to do with optic neuritis, so rest assured there. They can be normal, and probably are in your case since you have had them since childhood. Perhaps an antianxiety medication would help?

Good luck!

Lisa
Moderation Team

[Fed Up]

Hi Tiber;

22cyclist is absolutely correct in her advice and response to your situation.

If you stick to reading Fibro...you will find, ALL your symptoms fall under that. Regardless, the symptom management is little different than M.S. or anything else you think you have.

I doubt you are going to find a good friend while acting like a hypochondriac.

Just because your tests are perfectly pointing to Fibro..does not mean you cannot have something years from now.

Regardless, the treatment for Fibro is all you really need, anyway. Rest assured, if you have a real event; "you will KNOW." Plus, you have a few more symptoms of fibro that are worse than some of the M.S. symptoms; at times.

As a former health care worker; I never google or look for a disease and allow my M.D.'s to do it. You may want to do that, as well. And live your life to the fullest.

Using a psychiatrist to help you adjust to your Fibro is an excellent choice. imho; most psychiatrist's have a better knowledge of the meds used for M.S. anyway and can prescribe the appropriate medications for it.

And request a pain clinic appointment. Pain clinic can teach you tricks to manage symptoms and not be so focused on them, not to mention the symptom management.

The only test I think I did not read results of, would be; a spinal tap. Frankly, I would not want one or worry about it with such mild symptoms. As a diagnosis does rely on the other tests being positive and yours, simply are not.

Worry will only make your Fibro worse. Frankly, worrying about what could be or should be is something you need to let go of and deal with your assets, today with enjoyment.

NOTE: Any condition is worse with stress. Changing jobs, etc. is stressful. Not to mention Fibro. Fibro can be very debilitating and the parasthesias you describe are certainly in that realm.

Sounds like you've been properly diagnosed and should request medications for your symptoms. And start enjoying your life more and away from a pc.

This does not mean, you cannot develop something else, years from now. Instead of looking for disease, try looking for more fun and engaging activity. The best place and time to meet new and a good friend is while engaging in activities. I am sure your psychiatrist has a better idea of what you need to be doing and he/she can give you medication to help, as well. fed

It is my experience that most people are not doctors and really don't want to hear of your medical issues; except here. There is little your friends or co-workers can do for something they know nothing about. Maybe, stop boring them with your suspected health issues and get engaged with the good part of life.

[Tiber2011]

Thats OK. A girlfriend might help. But, for sure stay off of google for health related reasons for a while. Floaters have nothing to do with optic neuritis, so rest assured there. They can be normal, and probably are in your case since you have had them since childhood. Perhaps an antianxiety medication would help?

Good luck!

Lisa
Moderation Team

Thank you, Lisa. Good to hear about the floaters bit. I seem to have a little gray/clear fixed "floater" in both my right and left eyes in the peripheral vision.

It's more prominent in the right eye, and it's only easy to see indoors, while wearing contacts. I saw my opthamologist again on Saturday who did an ultrasound and checked me for neuritis (I asked, they didn't suspect it), said I was ok.

Yet, I was driving while very tired today. I had sunglasses on, and I took them off. I don't know if my vision had adjusted yet, but it looked like the gray spot on the pavement seemed to be 3-D for a millisecond! When I blinked, it was ok.

I don't want to keep pestering in this way, but is this optical neuritis (the gray fixed dot and what I saw while driving)?

I realized the MS specialists did not even label me as "probable." I didn't even know that term could be applied.

I've been such a basket case lately. Everything started with a bad back pain/spasm after a stressful few weeks at work in March.

[22cyclist]

No, that does not sound like ON. Besides people do not usually get bilateral ON at the same time, and your ophthalmologist checked you for it. They checked the overall health of your eyes and said they were OK. If they had been worried, they would have sent you to a neuroopthomologist. The next step up. ON starts with pain with eye movement, when the pain stops, a small or large blind or blurry spot appears on the eye. It does not change with glasses, contacts, or anything. It stays the same no matter the conditions. Over time (weeks to months) with or without treatment it resolves itself partially or completely.

It is easily checked by doing a swinging light test between the eyes. The eye that is affected will not react to the light, the other one will (its pupil). With any kind of ON. They can also check the back of the Optic Nerve by looking at it directly to see if it is swollen. If not, no ON. Sometimes retrobulbar ON cannot be seen this way, but it would show up on the light test. Your vision would also be pretty severely affected. Like 20/200 in most cases in an acute ON.

I am sure the Eye Doc checked for all of these things whether you noticed or not. I think you are in the clear.

If the MS specialist did not suspect anything, then you are in the clear there too.

Time to just do as Fed Up says, and worry about the Fibro for a while. That is a ligit diagnosis and one that can severely affect your life. You may want to seek treatment for that for now and try to feel better for a while.

Take care and seek treatment for the Fibro.

Lisa
Moderation Team

[Tiber2011]

No, that does not sound like ON. Besides people do not usually get bilateral ON at the same time, and your ophthalmologist checked you for it. They checked the overall health of your eyes and said they were OK. If they had been worried, they would have sent you to a neuroopthomologist. The next step up. ON starts with pain with eye movement, when the pain stops, a small or large blind or blurry spot appears on the eye. It does not change with glasses, contacts, or anything. It stays the same no matter the conditions. Over time (weeks to months) with or without treatment it resolves itself partially or completely.

It is easily checked by doing a swinging light test between the eyes. The eye that is affected will not react to the light, the other one will (its pupil). With any kind of ON. They can also check the back of the Optic Nerve by looking at it directly to see if it is swollen. If not, no ON. Sometimes retrobulbar ON cannot be seen this way, but it would show up on the light test. Your vision would also be pretty severely affected. Like 20/200 in most cases in an acute ON.

I am sure the Eye Doc checked for all of these things whether you noticed or not. I think you are in the clear.

If the MS specialist did not suspect anything, then you are in the clear there too.

Time to just do as Fed Up says, and worry about the Fibro for a while. That is a ligit diagnosis and one that can severely affect your life. You may want to seek treatment for that for now and try to feel better for a while.

Take care and seek treatment for the Fibro.

Lisa
Moderation Team

Thanks for this super-informative post, Lisa.

Another concern of mine is my right shoulder.

For the past month and a half, when I'd work on the computer, esp. with the mouse, it would grow tingly and fuzzy, spreading up my neck until I'd move my arm away from my body.

Now, the sensation comes on when I carry groceries close to my body, or just pulling out hairs from my face, etc.

It comes and goes, but has been occurring very frequently lately.

My physical therapist chalks it up to posture, and my neurologist didn't seem concerned when I mentioned it.

Is this the numb-tingling sensation that others have that warrant them a trip to a neurologist?

It seems to originate from my shoulder blade tip. It's sometimes felt like I've had a piece of tape sticking on my back there in the past.

I've been sleeping on my back for months, now, in order to not aggravate my arms.

[22cyclist]

Hey Tiber: I think you are describing an attack of your Fibromyalgia. You should probably see a Rheumatologist. This person can help you sort this whole thing out. They can treat you and make you feel better too.

Try to find one, make an appointment, and let us know how it goes, OK?

Lisa
Moderation Team

[Tiber2011]

Update:

So I have been trying to take my mind off of everything.

It seems to work most days. However, my right shoulder/ under arm area will still have a surface tingling, although it's not as bad as before. My left shoulder might feel it, too. Sometimes I even feel it in my lower back. If I move or rub the areas affected, the sensation may stop. Sometimes it doesn't.

I've been kinda scared for my vision - sometimes I see flashes at night or other phenomena in the day. Saw 2 ophthalmologists this past month and both said no ON.

A few times I've felt like I'm walking on a listing ship or feel like my head is heavy, but I tell myself it's either my sinuses being affected by ragweed, stress, and/or Lyrica.

I know you're all not doctors, but I see my neuro on the 19th. Should I ask for another MRI or a LP (never had one)?

[MSer102]

I know you're all not doctors, but I see my neuro on the 19th. Should I ask for another MRI or a LP (never had one)?

IF - and that's a big IF - you had symptoms and a history that pointed to MS a neuro might do another brain MRI in 6 months. Your symptoms and history don't point to MS and you just had a full set of MRI's a few months ago that didn't show any indication of MS. Plus it doesn't sound like anything has changed since your last MRI's. Your neuro might or might not think you need another MRI so soon but none of my doctors would say that one is indicated. I've been seeing my doctors long enough to know how they think.

An LP provides different kinds of information than you already have. So even though you haven't told us anything that points to the need for one you can always ask your neuro for one just to see what it shows. Your medical insurance might not approve one tho if there isn't a medical indication for it.

Two ophthalmologists have already told you that your eyes are OK. Seeing flashes in the dark is sometimes just mechanical. I'm nearsighted and I've been seeing flashes in the dark since I was a little girl. If there were anything wrong with your eyes your doctors would have found it. Why are you still scared?

You've been diagnosed with fibromyalgia. What are you doing about that? Why do you think your symptoms - which sound like fibromyalgia and not MS - are from MS and not from fibromyalgia?

How are you doing on getting in to see a therapist for your anxiety?

[Tiber2011]

IF - and that's a big IF - you had symptoms and a history that pointed to MS a neuro might do another brain MRI in 6 months. Your symptoms and history don't point to MS and you just had a full set of MRI's a few months ago that didn't show any indication of MS. Plus it doesn't sound like anything has changed since your last MRI's. Your neuro might or might not think you need another MRI so soon but none of my doctors would say that one is indicated. I've been seeing my doctors long enough to know how they think.

An LP provides different kinds of information than you already have. So even though you haven't told us anything that points to the need for one you can always ask your neuro for one just to see what it shows. Your medical insurance might not approve one tho if there isn't a medical indication for it.

Two ophthalmologists have already told you that your eyes are OK. Seeing flashes in the dark is sometimes just mechanical. I'm nearsighted and I've been seeing flashes in the dark since I was a little girl. If there were anything wrong with your eyes your doctors would have found it. Why are you still scared?

You've been diagnosed with fibromyalgia. What are you doing about that? Why do you think your symptoms - which sound like fibromyalgia and not MS - are from MS and not from fibromyalgia?

How are you doing on getting in to see a therapist for your anxiety?

Oh my gosh....I'm -5.50 nearsighted. I'm glad to know that I'm not the only one who sees flashes in this manner.

As per the psychologist, I'm going to finally meet him in two weeks, after weeks of our voicemails talking to each other. He's a "good one," and thus he's super-booked up. He was referred by a good counselor I started to see, but the latter also has a very tight schedule and we do no meet often.

As per the Fibro....as much as I hate Lyrica now, I still take it. I was told I can go up to three 50 mg pills a day, but now I do two in the day at most. It did turn down the pain; I'm just worried about side-affects from prolonged use.

My first neurologist, when I asked her about LPs (I keep thinking about records ) said "It would be literally a shot in the dark, as there's nothing to look for."

[Tiber2011]

Update: I had a sleep study done last Friday. I only slept a small number of hours.

I was told I have bad sleep apnea. The neurologist treating me also wanted to find out if I have a disorder where I act out my dreams

Today, I feel weird. I didn't sleep well - maybe 10-12 hours total this holiday 3-day weekend. Spot in the lumbar spine that came on 6 months ago hurts. Feeling like weakness between some fingers and toes. Some fasics and vibrations.