3 Year Fun - What do you think?

[insania2016]

Hello!

I'm curious to know your opinions about some of the symptoms I've been experiencing. Seems to me to be associated with nerves and muscles mainly.

No diagnosis yet. So far Myasthenia Gravis (being checked again soon), Lupus, Lymes, RA, Metabolic/Thyroid, adrenal, diabetes, cancer, and vitamin stuff are off the table. From what I understand these things can take a few years to be 100% ruled out but for now I guess my doctors have excluded them from the process up to this point.

What I DO have has been a slow progression but really got my attention starting in 2009.

For the record I'm a 34 year old Caucasian male. I know that with some of these things age, gender, and race can be a determining factor.

So here we go...

2007 - Got a mild sleep apnea diagnosis

2008 - started noticing some mild pain in my hip joint/ligament (right leg)

2009 - started getting "nerve" symptoms. I had more aches and felt weak. By weak I figured they were just aches due to less activity. The aches and I did feel fatigued. My muscles would seem to get tired quickly. The nerve symptoms felt like little bugs walking on my legs (mainly right leg from what I can remember).

2010 - Aches became prominent in my hands. Got MRI and CT of the brain. They were clean. The C-Spine had a narrowing but they didn't see it causing any problems. Then I got one of those EMGs and NCV. In both arms there was slow conduction from the elbow to the hand. The neurologist said it might be mild carpal tunnel in my hands and compacted nerves in my elbow. My symptoms seem to fluctuate between mild and really crappy. Ended up seeing a neurologist later as my nerve symptoms evolved. Basically in the achey areas I'd get twitches, "buzzing", and light needles (electric shocks?).

The areas of twitching and aches happened, at the time, mainly in my forearms and upper legs. The vibrations happened in my hands and lower legs and feet mainly.

I then had another MRI of my whole spine but they didn't see anything noteworthy.

The fatigue was horrible but I chalked that up to stress and the apnea.

As the year progressed the time between mild and crappy shortened.

2011 - Was referred to a rheumatologist. They gave a Rx for Nuvigil which got rid of a lot of the aches and fatigue.

So this year I'd get the needle in different spots that were sometimes strong as a bee sting that would persist for seconds... Typically those were in my feet. Though I got them in my hips, side, and arm. (Left has some but the predominant trouble area is the left side.) It seems to cycle from vibrations, twitching to needles, to feeling weak and numb.

The right side of my face started feeling numb. I started getting some needle sensations in my neck.

The weakness comes and goes in my neck and makes it feel harder to talk and swallow.

I noticed that I feel week in my hips/groin area. I went for a short walk and when I was done my right foot hurt bad. I had some aches and figured it was due to other muscles making up for the weaker ones.

I get double vision when I look to the sides now. Sometimes I have an eye that gets blurry. I can actually bend my neck to make different areas either twitch or get the needles feeling. Once in a blue moon if I move my neck a certain way I get this huge shock, in my neck only.

Hot showers/heat in general can make me feel sick.

Cold seems to make me stiff. Like I can close my right hand tight and let it go and it doesn't bounce back. My left hand does this some but it bounces back open.

I was sent back to the neurologist earlier this week so I get to get some more MRI's done. They want to check for MG again and who knows what else.

I did their little office tests and I walked funny. I couldn't walk on my heels that day because my right leg was to weak. I couldn't hold it up. Now, there are times when I can. I did about the same walking on my toes and walking heel to toe. I staggered a bunch.

I told them that some of muscles felt numb. By numb I don't mean sit on foot numb. There are spots where I just don't the muscle. If I push on it I can sense the pressure. If I move out of the area of course it hurts lol

Also I found in my right leg two "holes/dents?". One is in my lower leg. In the front to the right of the shin bone. It's a noticeable valley in the muscle following it vertically. You can notice it unflexed but it is very prominent when flexed. I used my left leg as a reference as it does not have the same dent.

I found another valley just above my right knee. When I walk around and go up stairs and stuff I do get sore spots near there.

Oddly I do get times where I'm pretty emotional kind of out of the ordinary. I typically think that it's just feeling bummed over my condition. Though sometimes I go through this period of feeling super apathetic.

In general I do have some stiffness and aches in the areas in or around my joints. (It's why they checked for RA, Lupus, Lymes, etc.) But I really notice it if I'm active during the day. Again, the aches seem to be that some muscles seemed to get overworked.

My butt is kind of bony but I'm a little fat so it's hard to tell lol

I have an appointment with my primary doc next week and I'll get to show him my muscle holes.

Seems like a progressing thing, does get a little worse over time. Not sure what it is yet.

I read some stuff about things like ALS, MS, MG, and some of the muscle disorders like myotonic dystrophy. But as with all things you read about it takes a professional to read your symptoms properly. I think the muscle dents are the most dramatic of visible signs to date.

In any case, I am concerned as something does seem to be happening. My new neurologist said my other two brain/neck MRI's were too blurry and they really couldn't tell much from it so that's why they ordered new ones this year. The Rheumatologist is in observation mode (i.e. come back every few months for a bit...)

So what do you think? Let me know if you need me to clarify any of this stuff.

 

[insania2016]

lol sorry about the grammar errors.

I want to point out that my symptoms never go away. They just seem to cycle through the same stuff in the same areas. They DO spread over time, albeit slowly.

Though, once in a blue moon I do feel like some of those spots will cramp but they usually don't. It will hurt but it's just a wanna be type of cramp. One spot in my left calf will feel like it wants to cramp but sometimes it feels like something drilling in to my leg with a lightning bolt.

Sometimes it feels like the weakness is something akin to where my brain is trying to tell something to move but it doesn't want to. Almost like it isn't there. If that makes any sense...

 

[insania2016]

The twitches also happens after a nice hard stretch. They typically will last for a few seconds in stretched muscles. Though the other day I stretched my arms really good and my right arm/tricep twitched all day. It stopped the next morning. That started happening this past week.

Makes me think this is more about something to do with my muscles locally then centrally. However it all seems to be more prominent and/or exaggerated on my right side.

In retrospect I wonder how much of this is related to one another and how much isn't... sorry thinking out loud.

 

[insania2016]

Sorry for the multiple quick replies but I should have proof read my original post before submitting and I can't an option to edit what I already wrote.

Correction:
"So this year I'd get the needle in different spots that were sometimes strong as a bee sting that would persist for seconds... Typically those were in my feet. Though I got them in my hips, side, and arm. (Left has some but the predominant trouble area is the left side.) "

Should read:
(Left has some but the predominant trouble area is the right side.)

Also worthy of note I do get voice projection issues and slurred speech when my body feels particularly bad BUT it's not constant. They happen when my neck area feels weak.

 

[Ms. Pie]

I can't imagine what you have but it sounds nothing like ALS. They would have performed EMG's a long time ago if they thought it was so even all your docs don't think it's that. If it was, by now you'd at least be in a wheelchair or maybe even dead by now. I hope your doctors figure it out soon. Sounds terrible. I do think you shouldn't be reading the posts here though. Don't cause yourself any more distress by reading about something you don't have. I was diagnosed in a matter of a couple months.
Good luck to you!

 

[insania2016]

I can't imagine what you have but it sounds nothing like ALS. They would have performed EMG's a long time ago if they thought it was so even all your docs don't think it's that. If it was, by now you'd at least be in a wheelchair or maybe even dead by now. I hope your doctors figure it out soon. Sounds terrible. I do think you shouldn't be reading the posts here though. Don't cause yourself any more distress by reading about something you don't have. I was diagnosed in a matter of a couple months.
Good luck to you!

That... is what I was hoping to hear. :grin:


I had an EMG and a nerve velocity test done last year that showed a slowness in my arms from elbow to hands. It was a watch and wait thing.

I am supposed to have another one done in a month or so to compare it to the baseline.

Ultimately, I just wanted some feedback from folks that have it. If you were to Google your symptoms and go by that you'd freak out!

 

[kmendsley]

That is why we are not too happy with D R G O O G L E here. many people just type in something as simple as fatigue or weakness and ALS will show up. Like Marta said, does not sound anything like ALS. Much too long of a time line.Though there is obviously something going on with you that sounds pretty horrible to live with. Has MS been checked? Keep searching for answers and don't stop until you get one. Good luck!

 

[trfogey]

Once again, time to pull out the "oldie goldie."

With ALS, it's not how your body feels, but how your body fails. ALS is a progressive degenerative neuromuscular disease, which means that, over time (and a short time at that), more and more nerves and the muscles that they control will fail -- permanently. It starts in one part of the body -- a hand, a foot, your mouth or tongue -- and spreads through the body from there.

If no muscles are failing, it's not ALS. If the muscle failures aren't spreading -- from the fingers up the arm, from the foot up the leg, or from the tongue to the rest of the mouth and throat -- it's not likely to be ALS. If your problems come and go, it's not ALS.

Given that your problems have been going on quite literally for years and you have no permanent disability, the chance of your problems being caused by ALS is effectively zero. Do yourself a huge favor and let ALS fall off your radar and let your doctors do the diagnosing.

Good luck to you.

 

[ktmj]

Maybe I scanned too quickly (sorry but short attention span) but did not see a reference to the type of doctor you are seeing.

If only a neurologist they are very general and you need to be seeing a neuromuscular specialist, preferably at a teaching hospital.

BTW your symptoms don't sound at all like ALS - I stopped reading at slow conduction and buzzing/vibrating.

Best wishes.

 

[notme]

A trapped nerve is the most likely issue from your posted EMG/NCV results. ALS would have shown different findings.

MS can come and go. A brain MRI can help diagnose it. The neck thing you described is L’Hermmitte’s sign, very often seen in ms.

I hope you find answere....but these are not ALS signs, thankfully.

EARLY SYMPTOMS
Symptoms more likely to occur earlier in the disease include:
Vision Problems. Optic neuritis, inflammation of the nerves in the eye, is a common early symptom in over half of patients. Patients may initially experience blurred or double vision, usually because of problems with one eye. As the condition progresses, vision loss increases, although total blindness is rare.

Tingling and Numbness Sensations. Tingling, crawling or burning sensations, or loss of sensation can occur. Patients may feel sensations of intense heat or cold. Symptoms often begin at the end of the legs or arms and move up towards the beginning of the limb. L’Hermmitte’s sign, which is caused by lesions in the cervical spine in the neck, is an electrical buzzing sensation that runs down the back and into the legs. It occurs when bending the neck forward.

Muscle Weakness and Spasms. Patients can feel weakness, clumsiness, or heaviness in the limbs. They may have difficulty with finger dexterity. Muscle spasms and stiffness (spasticity), particularly in the legs, occur in an initial attack of MS in about 40% of patients.

Problems with Balance and Coordination. Patients have an unsteady gait and difficulty walking normally and keeping their balance. They may have trouble grasping small objects. These problems can be compounded by other common MS symptoms, such as dizziness and tremor. Ataxia (lack of muscle coordination) and tremors (shaking or trembling of limb) affect up to half of patients.

Fatigue. Fatigue is the most common and debilitating symptom of MS and often occurs early in the disease. Fatigue is typically worse in the late afternoon and improves in the early evening, and may be accompanied by an increase in body temperature. At the onset, this occurs in about 20% of patients, but as the disease progresses, this is a significant symptom in nearly all patients.

Any of the above sound familiar? They are a few basic MS signs