Any suggestions as to where to go from here

[amyecpa]

Morning Everyone

If any of you have read my previous posts you are aware that my symptoms are perceived weakness in all limbs that originated in right arm/hand about 1 yr ago, persistent widespread twitching that is about 85% contained to my left calf/thigh that causes tightness and a little bit of pain, a pronounced head tremor mainly when laying flat and an occasional (once or twice a day) involuntary head jerk (looks like a tic). The "weakness" in my limbs just make them feel heavy and they get fatigued very easily. (no more exercise for me)

I know that you guys are not Drs, but a lot of you have been through the seemingly endless diagnosis journey. I have seen my PCP, 2 rhuemies, 1 neuro and even an "integrative medicine" dr (you know, one of those guys who specializes in bio-identical hormone replacement). I have had lupus/connective tissue panels run numerous times, I had a total of 6 mri's (brain and spine), I have had western blot test for lyme, several cancer-specific blood tests, myasthenia test, and I get my blood drawn quite often and all levels are normal. The integrative med doc had me do a $4000 test (Protonix panel I think it was called) that checks all kinds of things including heavy metals. I had a clean NCV and EMG 7 months ago. Nothing has shown up, but my CNS symptoms are very real. I'm an educated person and am well aware of conversion disorders and the mind/body connection and do not feel like this is "in my head". I plan to have a repeat EMG done as soon as possible

My question is this.... where do I go from here if the EMG is normal? What drs do I see? Any advice would be very much appreciated.

Hope everyone is having a good day (or their best possible),
Amye

 

[charlottecorday]

Hay Amye,
I, too, am new, but keeping up with you. I know you read a lot, as I do and are familiar with the saying"Ignorance is Bliss". Don't you wish that sometimes? You were correct in one of your posts that spoke of error in EMG's. Mine were both differing because one failed to warm up my calf.
It seems to me you are doing enough right now. Just be sure you have a trained tech, preferably the neurologist that you trust, actually performing both tests. Try not to be anxious as that can influence results. I know that is easier said than done.
Sounds like you are OK so far, and somatization disorder or conversion disorder would be my diagnosed of choice(for me, not saying your head is your problem), unfortunately, they are not in the picture for me because of my symptomology
Try and get through one hurdle at a time. Get your results on your EMG,NCS.
By the way, how is your diet and weight stability?Drug and alcohol intake can also cause weakness(Statins have been linked to muscle damage and weakness,especially 80mgZocor).Vitamin deficiency can cause problems, too.(usually, not always, if your diet is good, that should be OK).
Try your best to be positive.

 

[hopingforcure]

Hi,
the nerve conduction is what they really need to warm you up for. So if you were cold that can really affect results, I would think if they were normal that would mean the cold did not have an affect (make sense)..lol... I think a perceived weakness means that the docs did not find clinical weakness? really good sign.. How about the clinical in general? sounds like it did not point in any direction. Guess the usual suspects have been ruled out. Tell us more about the clinical findings, that might help point us to some possibilities. I would take ALS off the table for you..

 

[charlottecorday]

Hoping for cure is right. The temperature needs to be correct for the nerve conduction studies. This would actually be a great question for Wright. It might be possible that the warmth would relax the muscles. My personal understanding is it is necessary for the nerve conduction studies to be accurate.Why don't you PM Wright to get the answer you deserve, and let us all know exactly.
To what extent are you being tortured(joke, it is not bad at all).
Just curious, how long and what other psychotropic meds have you been on? A psychiatrist would never tell you this, but my opinion is that they are neurodegenerative.Most can cause tardive dyskinesia and other central nervous system disorders. I understand depression is horrible, but the way our country deals with the mentally ill is somewhat disturbing. Many psychotropic meds can shorten your lifespan by one-third.
Now, I understand most insurance companies are not covering mental illness, and depression, as natural as it may be, can fall in that category.
Even if you don't feel comfortable sharing that info here, please share it with yor neurologist.And please don't stop any med without consulting an MD.

 

[amyecpa]

I say perceived weakness because the EMG was clean 7 months ago and I haven't had any hand (dexterity) issues or foot drop. As far as clinical assessment goes, my neuro hasn't done an actual exam (reflexes etc) since my first visit back in October. I've seen him monthly since then.
My main issue is lack of sensation in all limbs. ALS wasn't even on my radar until the fasics started a few weeks ago. I can tell that my neuro is baffled. No MS, MG, diabetes, thyroid prob, cancer (paraneoplastic syndrome),no nothing. He feels that my head tremor is Essential Tremor, but there is no family history.
No one seems to be able to help.

 

[charlottecorday]

Tremors can be considered a dyskinesia. Please understand, I am not diagnosing you, just hoping you will continue your search for other possibilities.

 

[amyecpa]

I was on Prozac for 10 years and off and on for 5 yrs before that. There's not a day that goes by that I don't wonder if some of my problems stem from that. I wonder if I did all this to myself.

 

[cajebe]

I also have twitching. It is driving me crazy and pain in my arms, back, legs, feet and hands. I had developed a strangely high arch in my right foot. I feel weak and tired. And no one seems to know what is causing all of this. It is so frustrating for me as well. We what to know why this is happening to us and what can be done for it. I had a clean emg and see the neuro again in late Aug. It is helpful to know I am not alone in this limbo land. But, I hope for the best for you and the rest of us. Please feel free to contact me for support. :neutral:

 

[Northern Dancer]

Amy,

Prozac has been widely prescribed for many years and many people are on it for long periods. If it was causing any neurological problems we would have all heard about that by now. Don't blame yourself for your symptoms. Prozac has probably made life a lot easier for a lot of people.


ND