Concerns Over Motor Neuron Denervation

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J

johnsoncarter

Well-known member
I have not yet decided to have my fasiciculations and related symptoms assessed by a Neurologist. Am I concerned? Yes! Do I believe that I have motor neuron denervation? I am not certain but am not experiencing objective clinical signs and characteristics of weakness and muscular atrophy. In fact in spite of a number of symptoms I appear to be getting significantly stronger and faster as measured by my performance during workouts at the gym.

Have most of you guys been evaluated by a Neurologist for these symptoms OR are you relatively comfortable that your symptoms correlate with those for BFS and do not plan to seek further medical evaluation? In addition, do you feel that we are placing ourselves at risk by not seeking out a definitive diagnosis? Carl
 
Have them (fasciculation) evaluated!

Clinical.... well that’s the problem. We have pain, burning, fasciculation cramps, twitches, jerks etc. But clinical weakness! Most of what I have read on this board points to most if not all not meeting the clininical weakness criteria.

As your BFS evolves you will feel the weakness among other symptoms. Right now you may be in the state where you just have not had these symptoms but you will. I had the same issue for 3 months where perceived weakness was not an issue. But now I have "weak legs" and some knee joint pain. This will move on in the near future to another location and with a new symptom or maybe an old symptom in a new location. Transient.... that's BFS.

Weakness and atrophy from my understanding is a fundamental exam point when you visit a neurologist. If a neurologist has seen you you have gotten the "Clinical evaluation of weakness." I have sought evaluation from Internist, Rheumatologist, Neurologist, Cardiologist, ENT, Neuro-Opthmologist and anyone else I could get a consult with.

It is up to you when you will accept you have BFS and that it is responsible for your pain, burning, weakness, twitching, cramps, pins and needles etc.

If I had to do it over again having the knowledge I have now this is what I would do:
I. Two neurologist opinion
II. Two rheumotologist opinions

Why would I do this? Because I have found that in these two realms you can get cleared to accept a diagnosis of BFS as solid and not of another source such as a devastating disease such as MS, ALS or another auto-immune disease such as Lupus, Lyme, Scleroderma, Fibromyalgia that overlap and have similar symptoms to BFS.

Personally I have had
III. Three neurologist have cleared me and BFS is their diagnosis
IV. One rheumatologist examined me and he said I had gotten my diagnosis.... BFS. He did not even see it fit to have lab work done?
V. Another rheumatologist I am seeing is being a lot more thorough with all the lab work. The problem is that many of the doctors I have seen before have ordered similar but not exactly the same lab work and have all returned negative so far.

If this second rheumatologist says: "No connective tissue disease." Which he already did but wanted to alleviate my concerns with subjective testing...then I will abandon my search for another cause for my symptoms. I will accept BFS and like floater said maybe get on narcotic pain killer. A diabetic does not leave his/her insulin. A person with high blood pressure does not get of his medication. Why should I?

Though I suspect your case is different because I think you acclimated your body to klonopin and essentially made you nerves lazy. After some time you should return to being normal which explains your vigorous workouts and withdrawal symptoms. This is unlike the rest of us who need a chemical boost and may never return to normal. I really think you will return too normal because your case is opposite of most of the BFS posters. You took klonopin for an unrelated problem(s) before BFS. We took klonopin or klonopin type drugs after BFS.
 
Zeke, thanks again for your well thought out response. I believe that you are on target regarding your theory about klonopin making "my nerves lazy". In fact I believe that the lack of exogenous levels of GABA that I was receiving from Klonopin set up the conditions for me to experience a number of post klonopin withdrawal symptoms. Shortly after I completed my taper (approximately two years ago) from this medication I began to experience subjective/percieved feelings of weakness of my arms and legs. Not only did I feel as if I could not walk but felt extremely lightheaded, faint, unsteady as if I would fall down. My arms and hands felt as if I could not control their movement!

I was obviously extremely concerned and as mentioned in a previous post was evaluated by three Neurologists (all of whom could not find any clinical evidence of any neuromuscular disease BUT one who suspected MS based solely on an MRI of the cervical area that revealed an ambiguous lesion that COULD have been an MS plaque), a Rheumatologist (diagnosed me with Fibromyalgia), an Orthopedic Spinal Surgeon (no clinical evidence of neuromuscular disease but wanted to refer me for comprehensive MRI of the entire spine due to my subjective symptoms of feeling off balance and due to the ambiguity in an MRI of the cervical spine; however, the chief of Neurology and a Neurosurgeon disagreed stating that there was no justification for additional MRIs of the spine BUT referred me for a brain MRI which revealed no neurological problems), an Opthamologist (to evaluate if there was any indication of neuritis of the eye, a sign of MS; no evidence); a Vascular Surgeon (who performed extensive ultrasound imaging to determine the presence of any vascular problems; there were none but was diagnosed as having a vasovagal syndrome), two Cardiologists (to rule out any cardivascular conditions that may be contributing to my symptoms; there were none).

My isssue is that I am wondering whether there is any relationship with my current fasiciculations with my previous symptoms and whether they have any clinical significance? I could go through an extensive EMG workup BUT am reluctant due to the comprehensive series of medical testing I have already experienced and the exhaustive effect it has on my psyche. Thanks again Zeke, Carl
 
I'm not going to see a neurologist. They would just do a lot of expensive, unpleasant tests to confirm what I already know. what is the point? I did see my primary care doc, and she's going to do a couple of blood tests to rule out some easily treatable things, like thyroid and such. Beyond that, I don't feel a need to rule out everything under the sun. I twitch, so what? Time to move on.
 
Carl,

I was never concerned about my twitches until I googled it as a symptom of MS. I was never worried about ALS because I new the chances were slim. The funny thing is that I had logical thinking about ALS but not MS. Funny how the mind works.

I had twitching for at least one year before I goggled them. Then I freaked and that is when I sought medical advice. After numerous amounts of testing, I am now convinced I am fine, as that is what my doctors have told me. I do not have a BFS diagnosis because my doctors say it is a wastebasket dx. I don't know if I agree, but as long as I know it won't kill me, I don't care. I am not going to keep seeing other doctors until I get a dx because it just doesn't matter to me. My dx is that I'm fine, and again, I'm O.K. with that.

You have to do what is best for you mentally. If you think it will help you, then go for it. But I know many people here have never seen a doctor. Many have only seen a GP, and many have seen multiple GP's and neuros. Everyone has there own threshold on what they need for their own peace of mind. If you think that by having a doctor give you a BFS dx or telling you that you are fine will help you, then I say you should do it. Just don't get into the trap some of us have by not believing your doctors. Some of us have convinced ourselves so deeply that we have a nasty disease that we can't get over it even though our doctors and testing tell us we are fine. That just leads to more psychological and physical damage to a person. And also remember that some doctors are more aggressive with testing than others. If a doctor sends you for test after test even though previous testing was normal, he is probably just covering his bases, not because he thinks there is something wrong. Some of us have had doctors look at them and tell them they are fine and that is it. Some of us had doctors tell us they think we are fine but will send us for a million rounds of testing to just confirm it.

Hope that helps. Simple answer is, go to a doctor if you think it will help you mentally, but just believe them when they tell you that you are fine.
 
graham
its not simply the twitching that makes most of desire to rule everything out its the other than twitching. If all you get is twitching just waite a while for the full spectrum BCFS to develope.
 
Carl
it seems that you have had a lot high-end testing. What you describe pretty much eliminates anything other than acclimation to medication and consequently BFS type symptoms. You have covered everything! Settle into your BFS and other diagnosis and know its just a crappy to live with the combination. ;)
 
Carl,

Just realized you have already had multiple rounds of testing. Therefore, I agree with zeke that you have to accept your BFS diagnosis.
 
Hi 17Wildcat17,

Great response. I believe that you are correct that a number of us have difficulty in accepting our doctor's diagnosis and continue to experience inordinate levels of anxiety/obsession and angst regarding the possiblity that there remains an unidentified disease that has yet to be diagnosed. To be caught up in such a dilemma can be very painful psychologically and very debilitating in the sense that the person cannot move on with their lives with peace of mind. Regards, Carl
 
Hi Carl,
In answer to your question no I have not been evaluated by a neuro and yes that does still bother me sometimes. It seems from this board that GPs in the uk are less likely to refer you unless they see real alarm bells whilst those in the US refrer more just to be sure. My GP believes my twitches are anxiety (a chicken and egg dilema I believe) so I gain nothing realy by going back to see her unless my symptoms become markedly worse and point away from this.
My concern is that I am in the very early stages of a neuro disease (mother with parkinsons). I am aware that these diseases are often only diagnosed when symptoms become unmistakeable. My mother was told years earlier she just had benign tremor, so I feel that I will not gain peace of mind from a neuro visit at this stage unless my symptoms deteriate greatly. I am however open minded to my GPs theory as well and I am considering seeking hypnosys to see if anxiety about my mothers conditon is at the root of my problem. Hope this helps.
 
carl: In addition, do you feel that we are placing ourselves at risk by not seeking out a definitive diagnosis?

Physicaly I dont believe so, (but please correct me anyone if you feel otherwise) as most people here seem to of had the treatable stuff ruled out with routine bloodwork such as thyroid, diabetes etc. I think that the neuro stuff we are concerned about is untreatable so a definitive diagnosis is likely to make little impact on the course of disease.

However, the mental aspect of having symptoms that can not be explained can be stressfull and draining for many of us and this I think the stress itself could become a risk.
 

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