Unresolved symptoms

[LifeGoesOn]

Hello all! I've been a silent reader of this forum for months and appreciate the quality of discussion and people who dedicate their time to helping and consoling others. In my case, I've reached a point where I feel I need more than just being a passive observer, so please pardon me if my questions have been answered elsewhere or are difficult to answer. I'm just trying to determine what to do next.

A bit about me: I'm a 44 y/o male that started to experience a slow onset of exercise intolerance and fatigue over the past 2-3 years, with other symptoms beginning fall of 2011: regular nighttime sleep disturbances such as awakening multiple times with a fast heartbeat, horrible insomnia (0-4 hours of sleep a night for a period of months), feet sweating at night that progressed to a burning feeling, sudden onset of stomach muscle "ratcheting" when pulling myself up in the form of a situp, regularly waking up (when able to sleep) with numbness in an arm or fingers, and then it all culminating with a day where I suddenly felt deep leg pain in both legs (3/1/12) followed by a feeling of right leg weakness (3/2/12) and fasciculations in both calves (3/8/12 onset). All along this time, I'm working with my primary doc, and of course all blood tests and xrays/CTs come back normal. So, I'm referred to a Neurologist who does a NCV/EMG which comes back normal (3/15/12) although no fasciculations were recorded in the EMG. I then see a different Neurologist (who specialized in MND) who tells me that my clinical exam is normal and my symptoms don't sound like MND and that I should follow-up in 3 months. During this time, my fasciculations spread to my entire body and although my calf fasciculations are 24/7, they are definitely worse in the morning, although again, they are present all the time. The other fasciculations (body wide) I have are sporadic (but regular in occurrence and I'm also bound to feel a fasciculation somewhere within a 5 min period) and seem to come and go without reason. My right leg weakness and exercise intolerance continues (although I still try to work out although I'm not at the same level I used to be able to tolerate) and after any exercise at all, I wake up with weak-feeling arms/shoulders, legs, etc but again, nothing has progressed to "clinical weakness" nor do I have any obvious atrophy although my calves look smaller/flatter to me than they used to. I also still experience some sporadic sensory symptoms such as my right leg burning or a sudden heat spot on a foot and my hands and feet sometimes feel sore (never used to) and occasionally when I'm doing some form of exercise a muscle will momentarily cramp... So, bottom line is I'm a mess and worry about my persistent symptoms considering they have gone on for a period of time without abatement. My most recent interaction with the last Neurologist (about a month ago) was to find that I now have "brisk" ankle reflexes and 2-beat clonus in my left ankle. All was still declared normal in addition to a battery of blood tests checking for myopathies, autoimmune disorders, Lymes, viruses, etc, with a final comment of "good luck" and that I should keep a symptom log month-to-month but ignore my day-to-day symptoms. So, I'm left wondering what to do next. Follow my Neurologist's advice and wait to see what happens to my leg weakness and other symptoms over the coming months? Go back for another EMG/NCV? Visit an MND Clinic? Investigate other possible conditions (besides MND and BFS)? Continue to worry incessantly (ha)?

Sorry for the long post but as you can see I've got a lot pent up inside! Thanks to anyone who replies....

 

[edwards5257]

LifeGoes On. I know how you feel. I had my last neurologist visit last Thursday and he is an ALS specialist at a neuromuscular clinic in St. Louis, Wash U. I too have had numerous tests including MRI's and MRAs and then repeat tests of EMG/NCS plus more numerous blood tests last Thursday. I also feel like I have trouble swallowing plus weakness in my neck and face. I call for blood results in three weeks. My weakness is throughout my body but I TOO have widespread fascilations just like you. I was told no atrophy either. My diagnosis was small fiber neuropathy but the websites I visited don' t say anything about weakness for this condition. Obv. my weakness isn't clinical just perceived, but it sure feels like it. But I am trying my best to get ALS out of my mind, this is the second opinion of NO ALS (including the resident who examined me prior to the neuromuscular specialist last week). I share your concerns. I go back in November. I am hopeful that my symptoms don't get alot worse but I can tell it is hard, very hard to play the piano any more.

 

[Alyoop]

Not even one of the symptoms you mention is consistent with ALS, so best you drop that idea.

2 beats of clonus in an ankle is considered entirely normal as you have been told.

Your EMG is normal so you have no sinister mnd going on or any other atonal neuropathy.

You do however sound like anxiety is effecting your health. Your night time sleep disturbances, palpitations etc, certainly are classic signs of anxiety.

I twitch 24/7, had 6 emgs, 3 for the neurological issue I was trying to get to the bottom of, and the fasciculations only ever showed up once. Fasciculations on an EMG with no other abnormalities at all, are considered a normal variant. So don't worry about the twitching.

Your lack of stamina, could be caused by a passing virus, who knows, but it is not weakness......debilitating absolutely, but weakness it is not.

I am speaking from experience.

Best thing to do is keep active and stop g oo Gl e ing rare illnesses . You have been told by an expert that you do not have ALS, now it's in your hands, whether or not you want to accept that as tremendous news, throw a party etc. Or wallow in self pity.

 

[edwards5257]

Allyoop. I know that I am wallowing in self pity from time to time. I appreciate your candidness also here. I too must get on with my life, just like others are even with a diagnosis of ALS. THANKS for reminding me that I have been told three times, numerous tests, etc. NO ALS! Clean EMG's. Yes, the perceived weakness is debilitating but I am trying my best to live with it of course. Again thanks for your good input!

 

[seaside]

Anybody else thinking oops?

 

[Alyoop]

I dont really like to call it perceived weakness. It does describe it well, but it pushes the fatigue to the side and somehow labels it as Imaginary.
It was explained to me as " lack of stamina". It is incredibly debilitateing.

But and its a big BUT.........people on this site are dealing with the horrors of actual weakness. Not being able to move at all in some cases......If you can focus on that, then it sure helps you keep your own issues in perspective.

Thats not to say that your issues are not important, and your questions dont need answering as well......its just a terribly difficult line to walk. Its very easy for people to be insulted when they ARE dying from this horror and people just dont listen to the positive news that theit doctors tell them.

If you dont believe your doctors, have anxiety, then really, its your doctors you should be consulting and working with.

If at the end of an appointment you are still anxious, then make another appointment and discuss all your fears with the neurologist. They are actually very used to the fear that surrounds this disease.

If your neurologist does not answer so that you understand, just ask again. Thats what they are paid for.

 

[vzandt]

Gee..why do they all sound the same?

 

[kiwisally]

Yes Joe. Because they are vz.

 

[Alyoop]

Because a heck of a lot of people have the same fears and set of symptoms.
Some may be the same person, for sure, but others not!

My husband (neurologist) had a very very scared Cardiologist in his office last night, convinced he had MND. Poor chap hadnt slept in day, was a nervous wreck..............he didnt have it, and his physio should never have told him he had fasciculations. They were not, as the muscle was not relaxed when it twitched!

I know a neurologist who did his own EMG (or tried to) as he was having fasciculations and was a nervous wreck.

With the easy access to Information, we try to self diagnose, but only get a tiny fraction of the whole picture. Without any medical knowledge people get terrified and unreasonable.

sometimes I wish we just had the old GP down the road and an old beaten up dictionary. Life would be more relaxing.

 

[vzandt]

Easy access to information is driving these people crazy. I agree alyoop. The old gp down the road was probably listened to a little better to.

 

[HelenL]

great answer Aly!

 

[fitzroy]

The problem is it's easy access to incomplete information that is incredibly easy to take out of context. There is NO POINT in trying to research most of this yourself. There is EVERY POINT in trusting and working with your GP on your health issues. If you don't trust your GP, find a new one.

 

[edwards5257]

You're right fitzroy and trust your neuro also, I need to keep that in mind when I doubt!

 

[Tokahfang]

You've done the due dilligence, had the tests... it's time to take your neuro's advice and go live your life. Love your spouse well, play with your kids, do good work at your job, be a helpful neighbor, whichever of those applies in your situation. You aren't going to get anything by smashing your head on a diagnostic wall at this point.

Your symptoms are real, and they impact your life, so learn how to work around them and get stuff done. Get help for whatever anxiety you feel. Don't stop living your life over this, it's time to move on.

 

[Ms. Pie]

Love your responses Beky and Aly!