HealthCareMagic is now Ask A Doctor - 24x7 | https://www.askadoctor24x7.com

question-icon

Suggest Treatment For Myopathy

default
Posted on Tue, 30 Sep 2014
Question: Hi,
I am 37 years old, Male. Height is 180cms, weighs 73-74kgs. I have not seen the weight drop or gain drastically since last 8 years.
The current issue I have is that the body fat in my hands/arms and legs are on losing spree! I’ve been watching this since years that the bones/veins on these places are becoming visible and now it’s very much there as an annoying fact. It’s not just cosmetic. I can feel the weakness growing as well at times. By fingers have thinned (the loose ring i wear is an indicator) and when i try to open a bottle cap, there is pain that lasts for sometime on my palms as if there is not much flesh left and its all skin and bones! One my legs, i can see all the veins (no, it’s not varicose at all) as fat is lost. All the joints i have (wrist, elbow, knee, ankle) crackles/snaps every time i wake up from any posture I’ve been on for a while.

Recent blood test results: not so happy reading of 240+ total cholesterol, Triglycerides are in the 120-130 range, and TSH was around 5 to 6. Blood sugar levels are fine and so is blood pressure. Never had any major surgeries or accidents so far. Medications are taken only for common allergies, cold etc.
Used to smoke, drink mildly.
doctor
Answered by Dr. Dariush Saghafi (59 minutes later)
Brief Answer:
Myopathy of an inflammatory nature

Detailed Answer:
Good morning sir. My name is Dr. Dariush Saghafi and I am a neurologist from the XXXXXXX Ohio USA area. I am so sorry you are having this trouble. So my understanding is that you are losing bulk muscle from your limbs primarily while your trunk remains fairly stable as well as your overall weight. There is weakness in the hands and arms for sure. You haven't mentioned too much about weakness in the legs though it seems from description that you've lost noticeable bulk there as well. Are there no tripping or stumbling episodes of any sort? Aside from the cholesterol I don't see anything else in the labs you've presented of significance.

I looked at the picture you attached and agree that I notice atrophy of the intrinsic hand muscles in general. There are several types of muscular dystrophies as well as what we call inflammatory myopathies which can affect the distribution of the limbs and cause the symptoms you mention. An inflammatory myopathy refers to a process of inflammation that occurs in the body for unknown reasons and tends to TARGET muscle groups in the limbs more than in the trunk and neck or face although eventually those muscle groups are as well affected.

I take it you haven't really visited a doctor for this condition just yet. But now, you will need to get to a neurologist...preferably a neuromuscular specialist who will be able to do tests such as an EMG/Nerve Conduction study. They will almost certainly wish to get a muscle nerve biopsy and it is possible that they may wish to get a spinal tap or lumbar puncture.

There are also a number of laboratory analyses that should be obtained as well in order to try and characterize what type of inflammation is going on. For example, you mentioned your joints "cracking" somewhat, correct? Therefore, could this be some form of rheumatoid arthritis? I highly doubt but again, if I were ordering the labs I'd still get the markers because at this point anything positive in the labs may help us put a name to this process.

My choice of problems out of all that I think are possible is something called Inclusion Body Myositis which typically shows itself in the upper and lower extremities and progresses by causing muscle loss both in the muscles closest to the shoulder girdle and hips as well as farther away in the hands, below the knees, and in the feet. There is usually a characteristic "scooping out" of the forearms when this process begins and the handshake in these patients is quite weak and lethargic...not a strong biting grip as many men like to do to other men...but rather weak and as if the hand were being laid in the hand of the greeter.

And so in conclusion I believe you need the following:

1. Immediate screening and consultation with at least a neurologist if not a NEUROMUSCULAR specialist who can either do or send to be done the EMG/NCV studies in the extremities and back to find out electrically what's going on.

2. Lab tests looking for inflammatory markers and characterizing things according to possible arthritic types of diseases such as Rheumatoid arthritis though your hand picture really doesn't look like that.

3. Possible lumbar puncture depending upon what is found on clinical examination and on testing.

4. Biopsy to be sent of nerve and muscle block for positive identification of this process.


If the information I've provided has helped you understand a bit more completely what I think you may be suffering from and how you should go about addressing the problem then, I would greatly appreciate your written feedback as well as a STAR RATING of how well I answered your questions and helped you take the next step to feeling better or understanding your problem.

If you also would have no further questions at this time then, CLOSING THE QUERY on your end would also be greatly appreciated so that the network can properly credit this case, archive it, and have it ready for future reference.

I wish all the very best to you and would also mention to you that I am available to do live ON CAMERA WEB BASED MEDICAL VISITS or LIVE visits without camera and just with either voice or sending messages back and forth through a platform by the name of HealthTap Prime. If you are interested in allowing me to see the rest of your limbs and how that compares to your trunk then, I may be able to better characterize what you are describing.

But in actuality, I must say that nothing can substitute for a good neurologist or neuromuscular specialist to see you and be able to lay hands on you as well as perform the tests that are necessary in order to get a diagnosis.

In case you still find the webcam consult of utility then, you can find me at www.healthtap.com/drsaghafi in order to see who you will be contacting specifically and directions on how to make the real time contact. I am on shift Wed-Sat's from 3a-6a (New York City Time). I am also on Sundays 11p-3a (such as tonight). I'd welcome a consult with you on that network as well if you wish to be on camera so I can see you personally.

Once again, your written feedback, STAR RATING of the information, and CLOSING OF THE QUERY are greatly appreciated if there are no further questions or comments.

Otherwise, this query required 41 min. of physician specific time for review, research, and documentation for final draft and envoy.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
default
Follow up: Dr. Dariush Saghafi (36 minutes later)
Thanks Doc, for the detailed answer. I would definitely visit a neurologist ASAP. Just one question to boost my dropping morale! Do you think these symptoms can be reversed with medication etc?
doctor
Answered by Dr. Dariush Saghafi (2 hours later)
Brief Answer:
Helping Keep Morale High

Detailed Answer:
Good morning sir.

Though I would very much love to make such predictions, you know that it is not possible for me to state whether or not your condition can be reversed or improved with a medication until we have a solid diagnosis in hand. You will easily read information on the internet that in general most anything to do with muscle atrophy and loss in the manner of your case does not have a specific medication to reverse the process. This is because we don't really know how any of these degenerative pathologies either get started or why they target the muscles the way they do. That is why research is ongoing and the people involved are fighting every day for more governmental funding and assistance since their work overall helps relatively few in the world. Of course, if YOU ARE THE ONE then, this becomes very endearing to your heart.

Having said that in fact, there are TREATABLE CAUSES of muscle atrophy and loss which have to do with nutritional diseases, electrolyte imbalances, toxic exposure to certain chemicals and other environmental types of phenomenon. And we do know that in some cases if we can find and address the root cause of the problem that results can and do occur to either halt or if we are lucky reverse the situation.

THEREFORE, and I say this with some degree of emphasis in my TEXT WRITTEN voice...it is VERY IMPORTANT that you stay positive throughout the entire time that your doctors are given the chance to do their workups using laboratory and diagnostic testing as well as the all important neurological testing. I've seen your hand in picture and though there is definite atrophy I also still see quite a bit of muscle that appears good enough to extend the fingers wide, hold the wrist against gravity and rotate the forearm so that the palm is down. I am sure you can probably go the opposite direction as well. This means that strength for these activities is there and is good enough at this point to accomplish those things. We want to at least keep that much going and of course, make it even stronger with time.

What we want to do is have your BEST FRAME OF MIND so that you can have as much POSITIVE ENERGY and strength to proceed as rapidly as you can through the proper workup and get the answers we need in order to come to the point of diagnosis. Then, comes the implementation of a plan whether it be by medication, physical therapy, by replacing certain nutritional elements, or by excluding certain things from your environment.

I hope this motivates you substantially to get on the telephone today and get your family involved so that you may put into play some of the things I spoke to you about last evening. First things first though and you need a good neurologist who can lead to a most probable clinical diagnosis through careful examination and questioning of your history. I think it is very important that this process has been going on for "years" as you put it as opposed to weeks or months. This helps us place the timing of the disease in a certain category and allows to prognosticate progression assuming all else remains equal.

So by all means sir.....let's KEEP THAT MORALE HIGH....you are now on a focused mission to discover answers and march ahead to whatever is in front so that we can come to a treatment plan and no matter what the diagnosis comes to be I can assure you that there IS A TREATMENT PLAN available.

Remember, no matter what the outcome may be you are now moving FORWARD one step at a time so long as you get a diagnosis as quickly as possible. No fear...just determination to get the diagnosis! I have patients who come through this sort of thing on a regular basis who realize that many unexpected things happen along a journey such as this one and we cannot predict outcomes without going forward into that territory. We know that standing still where we are is NO GOOD....do you agree?

The very best to you and do not forget that I am always available for further consultation on this network by specifically asking a question of MYSELF (Dariush Saghafi) or if you'd like to consider an on camera live evaluation (to the extent we can do such a thing long distance) that I am reachable through www.healthtap.com/drsaghafi

Note: My hours for on camera consultation are Wed-Sun from 3a-6a (New York City Time Zone) and Sundays 11p-3a.

Cheers!

Again, if any of the information I've provided is of value to your needs and questions I would greatly appreciate the favor of your written feedback and a STAR RATING of our encounter. And if no further questions at this moment are left to answer your CLOSING THE QUERY would also be greatly appreciated so that the network may credit the efforts on your behalf for future reference. We can also reopen the lines of communication in short order if necessary or once you have more definitive information.

This response required 30 minutes of physician directed review, research, and documentation of the final draft for envoy.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
default
Follow up: Dr. Dariush Saghafi (5 hours later)
Thanks a lot doc, that was a reassuring one. I am getting prepared to face whatever is ahead and do understand that a positive attitude is all what matters. I am out of country and will be back by October first. I will definitely visit a neurologist asap.

In the meanwhile, I was thinking of joining a gym, do some mile exercises, walking, cycling etc. Will that have any adverse effects?

Thanks and much respect.
Bip
doctor
Answered by Dr. Dariush Saghafi (1 hour later)
Brief Answer:
My commendations on your decision

Detailed Answer:
I think you deserve lots of congratulations and kudos for your decision to stay positive and think about how to be proactive, even while you are away and not able to see anybody for a few more weeks. This is very important.

Just as importantly is your ability to keep the muscles toned and working without necessarily "beating them up" unnecessarily. To that end I wish I could give you a definitive answer but without knowing exactly what the diagnosis is or WILL BE it's very tough to just say "Yea or Nay" to exercise. I can say that our attitudes toward exercise have changed over the past 20 years when it comes to working with people who have myopathies as it appears you have. Whereas before the fear was that heavy exercise would tear down good muscle tissue which could then, trigger a domino like effect and wipe out the rest of the good fibers....now we are not as concerned about that anymore and studies seem to be showing that exercise programs are making people stronger who have myopathies.

You may consider altering your diet just a bit in order to get a bit more protein into your diet to see if your muscles might want to absorb some in for construction purposes of the muscles. Again, if you're not sure exactly how to do this you may wish to consult a professional.

Therefore, here is a link to an abstract which an exercise specialist or a rehabilitation specialist is sure to understand. Perhaps you can print this out and find someone who can read it, understand what they are trying to say in terms of exercise in your condition, and then, come up with a nice plan for you to follow. I would say that the best way to handle the dilemma of exercise vs. not to exercise until we have a diagnosis is to somehow "split the difference" as it were.....does that make sense?

So, if you can get someone to generate a fitness program based on what this article's abstract says and keep the intensity level between MILD & MODERATE then, I think you'll be hitting the happy medium which will keep you enough in shape to be beneficial at least for some muscles while not tearing unnecessarily at good fibers or overexerting your good groups. The source of this article is from CURRENT OPINIONS IN NEUROLOGY which I believe is a highly reputable professional journal. I often refer to its content on a variety of topics.

http://www.ncbi.nlm.nih.gov/pubmed/0000

Best of luck to you and please do me the honor of keeping feeding my antennae information to help keep me stay in the loop by getting back in touch once you have a better diagnosis and a plan as to how to intervene. Perhaps, you would like to do a webcam consultation on another occasion so I can see you live online? I may even be able to solicit some opinions from experts on this side of the Pond by showing the video so you may wish to consider such a possibility.

As before, if I have provided you with any more insight or help into your questions on this round of discussion then, your written feedback on how closely I was able to target what you were looking for as well as a STAR RATING would be so very appreciated. In addition, CLOSING THE QUERY on your end allows the network to file and archive the thread for future reference.

This response required 27 minutes of physician specific time and effort in order to review, research, and document final draft for envoy.

And don't forget what my wrestling coach used to tell us all the time and I tell to my team now (I'm an assistant coach at XXXXXXX XXXXXXX University).....P-M-A which means POSITIVE MENTAL ATTITUDE!

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
Answered by
Dr.
Dr. Dariush Saghafi

Neurologist

Practicing since :1988

Answered : 2473 Questions

premium_optimized

The User accepted the expert's answer

Share on

Get personalised answers from verified doctor in minutes across 80+ specialties

159 Doctors Online

By proceeding, I accept the Terms and Conditions

HCM Blog Instant Access to Doctors
HCM Blog Questions Answered
HCM Blog Satisfaction
Suggest Treatment For Myopathy

Brief Answer: Myopathy of an inflammatory nature Detailed Answer: Good morning sir. My name is Dr. Dariush Saghafi and I am a neurologist from the XXXXXXX Ohio USA area. I am so sorry you are having this trouble. So my understanding is that you are losing bulk muscle from your limbs primarily while your trunk remains fairly stable as well as your overall weight. There is weakness in the hands and arms for sure. You haven't mentioned too much about weakness in the legs though it seems from description that you've lost noticeable bulk there as well. Are there no tripping or stumbling episodes of any sort? Aside from the cholesterol I don't see anything else in the labs you've presented of significance. I looked at the picture you attached and agree that I notice atrophy of the intrinsic hand muscles in general. There are several types of muscular dystrophies as well as what we call inflammatory myopathies which can affect the distribution of the limbs and cause the symptoms you mention. An inflammatory myopathy refers to a process of inflammation that occurs in the body for unknown reasons and tends to TARGET muscle groups in the limbs more than in the trunk and neck or face although eventually those muscle groups are as well affected. I take it you haven't really visited a doctor for this condition just yet. But now, you will need to get to a neurologist...preferably a neuromuscular specialist who will be able to do tests such as an EMG/Nerve Conduction study. They will almost certainly wish to get a muscle nerve biopsy and it is possible that they may wish to get a spinal tap or lumbar puncture. There are also a number of laboratory analyses that should be obtained as well in order to try and characterize what type of inflammation is going on. For example, you mentioned your joints "cracking" somewhat, correct? Therefore, could this be some form of rheumatoid arthritis? I highly doubt but again, if I were ordering the labs I'd still get the markers because at this point anything positive in the labs may help us put a name to this process. My choice of problems out of all that I think are possible is something called Inclusion Body Myositis which typically shows itself in the upper and lower extremities and progresses by causing muscle loss both in the muscles closest to the shoulder girdle and hips as well as farther away in the hands, below the knees, and in the feet. There is usually a characteristic "scooping out" of the forearms when this process begins and the handshake in these patients is quite weak and lethargic...not a strong biting grip as many men like to do to other men...but rather weak and as if the hand were being laid in the hand of the greeter. And so in conclusion I believe you need the following: 1. Immediate screening and consultation with at least a neurologist if not a NEUROMUSCULAR specialist who can either do or send to be done the EMG/NCV studies in the extremities and back to find out electrically what's going on. 2. Lab tests looking for inflammatory markers and characterizing things according to possible arthritic types of diseases such as Rheumatoid arthritis though your hand picture really doesn't look like that. 3. Possible lumbar puncture depending upon what is found on clinical examination and on testing. 4. Biopsy to be sent of nerve and muscle block for positive identification of this process. If the information I've provided has helped you understand a bit more completely what I think you may be suffering from and how you should go about addressing the problem then, I would greatly appreciate your written feedback as well as a STAR RATING of how well I answered your questions and helped you take the next step to feeling better or understanding your problem. If you also would have no further questions at this time then, CLOSING THE QUERY on your end would also be greatly appreciated so that the network can properly credit this case, archive it, and have it ready for future reference. I wish all the very best to you and would also mention to you that I am available to do live ON CAMERA WEB BASED MEDICAL VISITS or LIVE visits without camera and just with either voice or sending messages back and forth through a platform by the name of HealthTap Prime. If you are interested in allowing me to see the rest of your limbs and how that compares to your trunk then, I may be able to better characterize what you are describing. But in actuality, I must say that nothing can substitute for a good neurologist or neuromuscular specialist to see you and be able to lay hands on you as well as perform the tests that are necessary in order to get a diagnosis. In case you still find the webcam consult of utility then, you can find me at www.healthtap.com/drsaghafi in order to see who you will be contacting specifically and directions on how to make the real time contact. I am on shift Wed-Sat's from 3a-6a (New York City Time). I am also on Sundays 11p-3a (such as tonight). I'd welcome a consult with you on that network as well if you wish to be on camera so I can see you personally. Once again, your written feedback, STAR RATING of the information, and CLOSING OF THE QUERY are greatly appreciated if there are no further questions or comments. Otherwise, this query required 41 min. of physician specific time for review, research, and documentation for final draft and envoy.