This Neurology & Neurosurgery forum is for questions and information regarding Rheumatoid Arthritis Neurology & Neurosurgery conditions and symptoms. All questions will receive a personal answer from a medical expert.
Visited neurologist due to longterm muscle weakness, nerve pain (occassional stabbing hot pins), twitching, mild spasms in feet. Optimally treated for autoimmune hypothyroidism - 7 years (no diabetes). Neuro found vitamin E deficiency @ "0.4",range being 3.0 to 16.0 (B6 & folate normal). Previously found vitamin D deficient & low-normal B12. Being treated now but after 4-weeks of E therapy and 4 months dosed on other 2 vits, no improvement. Symptoms worsened a bit with the dosing (or possibly from stress).
Neuro says symptoms don't present like ALS but rather likely a peripheral neuropathy.
Muscle weakness has been occurring at least 5 years but worsened the past 2 or so. Despite weakness and neuropathy symptoms, no atrophy in my muscles. My CK & other muscle enzymes tested normal (usually below mid-range). Negative for muscle disease, lyme and autoimmune & globulin causes.
Four groupings of muscles in my upper extemities (14 different on right side) and four groups in my lower (13 different on right and 13 on left), were needle electrode tested and given "normal" status. There were no Fibs, PSWs or Fascs found. (Yet I do experience some muscle twitching in my hands and feet.)
""mild to moderate drop in amplitude in the CMAP of peroneal and tibial nerves and left showing the median and ulnar...SNAP reveals low amplitude especially in the surals ... conduction velocities are in low-normal and slightly below normal, slightly prolonged on the left tibial...latencies are preserved...H reflexes are symetrical...reflexes are hypoactive...the needle study does not reveal acute or chronic denervation."
CLINICAL IMPRESSION: "The study reveals drop of amplitude and conduction velocities in the lower range of normal, consistent but not diagnostic of axonal peripheral neuropathy."
QUESTION: Do you generally concur with my neuro (not indicative of ALS)?
Well i would surely agree with your neurologist as the results are still not conclusive about the presence of ALS.
I would also like you to know that your treating doctor might have kept you up on radar for 6 monthly follow up as he might be suspecting ALS.
MS, ALS, etc are those conditions which need a proper clinical as well as a radiological evaluation, before arriving to a conclusion.
SO please b e assured and have a perfect lifestyle. You surely should have a re-evaluation done after 6 months, am not denying that fact.
I hope you take no offense and it may appear I'm seeking a "perfect answer" and I assure you I'm not but the neurologist didn't say he "suspected ALS" - to the contrary he said that he did not and my question was if you 'generally" concurred with that evaluation based on the completed EMG/Nerve Conduction.
Additionally, I found info, just last night in regard to some of the abnormals of my amplitudes and some of those are specifically "sensory nerves" and while some research has shown that sensory nerves can be "subtly" affected by conditions such as ALS, it typically doesn't involve them. This was important info that does indeed tell me that my neuro is correct in that I have a peripheral neuropathy and not a neuromuscular degernerative disease. This, along with no Fiscs, PSW or Fribulations added more assurance.
Hopefully you and MedHelp are not offended but my suspicion is that due to your time contrants, you sometimes miss not only what a question is being asked in regard-to but also the angle from which it is presented. I say with complete honesty that I was not wanting a pre-concieved positive answer but I can tell by your answer that you felt I was saying that my neuro suspected ALS rather than the opposite.
"Neuro says symptoms don't present like ALS but rather likely a peripheral neuropathy"
Well we would to believe as what your treating doctor has said.
And it's good to have a diagnosis of Peripheral Neuropathy rather than ALS. But as i said before... we really can't still rule out ALS. Hence 6 monthly checkup to rule out ALS completely is required. As suspicion is the cause of other symptoms.
Yes, that does help clarify although my question was in regard to the EMG - that does bring more light however- thank you!
Peripheral neuropathies are by-far more common than are ALS/MND and even MS although MS is more frequently diagnosed than are the prior two I've mentioned, as I've found through reliable med sources. This is a fact I suppose everyone with neuropathies has on their side.
This is what the Neuro-Doc stated on the community MedHelp forum in regard to my same question I gave here:
"Hi, Thank you for your question. Your muscle weakness symptoms could occur due to injury to a nerve, pressure on spinal or peripheral nerves (neuropathy), vitamin deficiency, lack of blood supply due to cholesterol plaque from atherosclerosis in the extremities, viral infection and use of certain medications. In addition, atherosclerosis can also cause pain, numbness, and tingling while walking and they can also reduce blood supply and lead to numbness or weakness. Please consult your doctor to get all these possibilities evaluation in your case for further assessment. Hope this helps."
I was indeed found to have 3 vitamin deficiencies and this points already to cause of my peripheral neuropathy. You could actually take the "ALS isn't ruled out" even further I suppose by saying that any human being on the planet hasn't had it ruled out, even if they have no symptoms at all.
While some of my statement in this reply may seem unusual, I think I make valid points because it almost seems insensitive in some ways when some patients are fearing they may have a disease that can kill them in 2 or 3 years to vaguley say to them, to the effect "you might have the disease but keep your hopes up" - rather than to the effect "ALS is a less common cause of your symptoms but still needs to be ruled out".
This WAS NOT the type reply you gave me Dr., I add this due to statements I've seen made on other website forums. I in-fact found a reply to a person who posted on a forum with muscle twitching in one leg as their ONLY SYMPTOM and the reply they recieved from a moderating medical person was: "that is conncerning for ALS". I was floored by this because there are anxiety/stress forums on which literally hundreds of members to muscle twitching anywhere from one limb to bodywide.
Thanks for letting me add these statements I honestly believe they need to be brough out from time to time for perspective
Just to update, I had a follow up visit with my neurologist on the 27th. As a process of diagnosing and ruling out suspected causes of my myopathy and neuropathy type symptoms, he's having further muscle-related tests done because he feels if there is a direct muscle cause, it would likely be a metabolic myopathy. One of the tests will be to further rule out myasthenia gravis. He leans toward this being an axonal peripheral neuropathy and he assured me that neither my blood tests nor my EMG/NCTs indicate motor neuron disease and specifically he said that my clinical picture does not pose a suspicion for ALS.
I also learned an important fact by him, in-that muscle twitches which are very commonly "benign fasciculations", are usually stress/anxiety related and don't present the same as those that occur with MNDs. He also pointed out that they do not occur before significant muscle atrophy has first taken place. I have no atrophy, even with 10 years of noticable muscle weakness that occurs with strenuous use of them and my muscle twitches are intermittent (sometimes months or years between) and can occur even in the trunk of my body, on my scalp, etc... I have suffered anxiety since my teens but well-controlled for the most part and is the likely cause of my BFS.
I'll likely have several months of testing, since only one test can usually be done per month, which may include nerve/muscle biopsy and spinal tap. Thank God for Bluecross insurance!
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