Muscle Soreness

[Elizabeth]

Reading and responding to some of the other messages on this Forum prompted me to write my own message. Starting in January I thought I had the flu. I had all the classic symptoms; tiredness, weakness, achy legs and hands and overall yuck. The symptoms gradually decreased but then every once in a while I would get these strange shivers/tingling going down my spine out my arms and down my legs. My hands would be weak and clumsy. Gradually those went away and now I am left with a muscle soreness in my legs that is with me constantly. I have had this muscle soreness for 8 months, 24 hours a day, 7 days a week. I can't remember the last time I have moved my legs without them feeling sore. Sometimes (one or two times a week) they feel so weak, like i'm recovering from the flu, that I just have to sit and put my feet up because I don't feel like doing a thing.

I have done the ususal MRI of brain and spine, EMG, blood tests, Lyme tests - all negative. Physical exams are normal. I have left many a doctor stumped.

My neuro doesn't seem to think it's MS - but he can't be 100% sure. (He doesn't think its time for a spinal tap). The only other two symptoms I have is the occasional weakness/heaviness/clumsiness in my hands, but this lasts only a couple of hours and leaves. Also, I have been feeling lightheaded lately (but I also got a new perscription for contacts).

I'm sick of going to doctors - and one of them suggested that I could have had a viral infection in January and it's just taking an extra-long time to recover (hence the muscle soreness). What do you think? Does this sound like beginning symptoms of MS or just an extra-long recovery. Health wise everything else is fine. Should I start the round of doctors again or should I wait and see? Thanks in advance to any advice from anyone!!

[CCF Neuro[P] MD, RPS]

Dear Elizabeth:

Viral illnesses are classic for causing havoic on a person, both physically and emotionally.  Since all your tests are normal, I think this is a good sign.  Multiple Sclerosis is a clinical diagnosis, in that there is no single test that will say you do or don't have MS.  The classic findings are a reoccurring muscle weakness and/or parasthesia that comes and goes and almost completely recovers (hence the name multiple).  Your symptoms have not had this course but have continued without remitting.  Although rare forms of MS can do this, you would have gotten much worse over the period of time.  I would agree with your physician and don't think you have MS.  One can get a myositis (muscle inflammation that causes muscle breakdown) from a viral infection but usually the CK is elevated, I assume yours was normal.  

An illness can manifest a disorder that would not otherwise be manifested, such as a mitochondrial disorder.  However, in that all your labs were normal something like this occurring without some sort of lab abnormality would be very remote.

Sometime diseases need time to manifest themselves to us, since our abilities to detect them is so limited.  It may be worthwhile to collect all the data, and seek a second opinion from someone who would be freshly looking at everything and do a good neurological exam.  Sorry, I can be much help.

Sincerely,

CCF Neuro MD

[NRO-Sx]

With the symptoms you have described so far, the differential diagnosis includes a lot of neurological diseases:  Demyelinating disorders (such as multiple sclerosis) may (in early stages) be undetectable with conventional spin-echo cranial MR scans.  An LP would show the presence of oligoclonal bands in CSF if you have MS.  Other types of neurological diseases to consider are infections, such as meningitis, poliomyelitis, NeuroAIDS, Lyme disease; Myasthenias, muscular dystrophies and other myopathies including myasthenia gravis, Duchenne, Facioscapulohumeral, and myotonic muscular dystrophies, and the mitochondrial myopathies (but I'd need to see your EMG results). Autoimmune disorders including multiple sclerosis, paraneoplastic syndromes, Guillain-Barre syndrome, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and polymyositis are others.  One other entity to consider is neuro-Behcet's disease.  You may need to do some hunting to find a good neurologist (MD-PhD preferred) who's been in practice for some time and has a background in neuropathology and who keeps up-to-date on current diagnostic possibilities if you are to get your diagnosis efficiently without redundant tests.  I urge you not to give up!  Best wishes.

[CCF Neuro[P] MD, RPS]

Dear NRO-Sx:

Thanks for your comment, but realistically, with a normal MRI, presenting symptoms, normal EMG, normal labs, the vast majority of your differential diagnosis is likely not happening in Elizabeth.  I just want Elizabeth not to think that she may have these entities.

Sincerely,

CCF Neuro MD

[Elizabeth]

Thank you for that comment! After I read the comment, I started looking at the definitions of all those other diseases and started to get really nervous. Thanks for putting my mind at ease, but I am willing to keep an open mind to anything. I came across an article for a free screening for peripheral vascular disease. The disease, which involves hardening of the arteries that carry blood to the arms and legs, can cause leg pain, numbness and tingling. The test is a simple blood pressure test measured in the arms and ankles. I myself am going because I have some of those symptoms. It wont hurt to go, and I can (maybe) cross another "do I have this disease" off my list. Thanks for your help - and thanks for the reassurance.

[CCF Neuro[P] MD, RPS]

You are welcome.

CCF Neuro MD

[Elizabeth II]

Dear Doctor, How kind you are in following this person's questions and relenting quest on what exactly is happening to oneself!   Your forum is the best as you are empathetic, follow throug with much information to set a posters mind: you are the best on the whole forum as far as I am concerned.  I also have been trying tofind out what exactly is going on with myself but I am a layperson and find myself very confused; however, I know I must wait until more and more is present to make a positive dx by all these Massachusetts South Shore Physcians!!!! The only way to get answers, to a degree, is to go to Boston! Thank you so much for your input on this forum!  Elizabeth/Lillabet

[CCF Neuro[P] MD, RPS]

Best of luck, keep us informed.

CCF Neuro MD

[Christine]

To Doc RPS:

As I have said before... "On-Call 24-7, dedicated to the art, a sage quoter of wise quotes wrapped in the stylish cloak of unsurpassed angelic devotion.   I am curious as to the identity of your astrological sign?   This Forum is fortunate to have the "Dynamite Doc from Cleveland" at the helm.  Thanks for everything.

Christine

[CCF Neuro[P] MD, RPS]

Dear Christine:

Actually I don't know.

CCF Neuro MD

[Christine / 4 Doc RPS]

Dear Doc RPS:

It's that old journalistic cliche... "That which is interesting is important and that which is important isn't interesting."  Check the Plain Dealer's entertainment section, match your birthdate and let me know.  The truth is, my novel contains a dedicated physician (I think you know about this) and a little astrological research of your sign would help immensely regarding the good doc's personality characterization.  Tis up to you.

I took your advice to slow down... life is long.  I'm down 45 mgs per day on morphine sulfate, post craniotomy.  All my specialists labled the procedure "huge".  I don't know what it is about your "manner", but... your ability to convince is far greater than theirs.  Your quotes alone served to bust 180 mgs per day of MS-Contin down to 135.  I'm also down on ritalin.  60 to 40.  Why?  Your mannerisms and the way you serve.  I intend to keep reducing because the whole concept is interesting.  You wouldn't believe all the side-effects.  Every stitch of what I've been living is being characterized in the novel.  (MS-Contin in 1880 will be known as "laudenum" in the book).  Just gimmie your sign so I can continue to be slow for healing sake!  It might not be important to you... but "journalistically", it is to me.

Write on,

Christine

[CCF Neuro[P] MD, RPS]

Libra

[Christine]

Dear Doc RPS:

Ruled by Venus.  Your slogan?  "I balance."  (yes, you do)  Librans teach that love is beauty... and learn that love is harmony.  Libra physiologically rules the reins.  Ever have any problems concerning yours?  I wouldn't doubt it if you did.  I, myself am a Leo.  Central Nervous System.  I need say no more.  But... Librans are Air Signs.  Air is of the mind.  Very mental.  Air is knowledge.  Gee, so are you.  My daughter is Air.  She possessed an IQ of 140 in the 1st grade.  Air is communication.  You do that well.  Mayhap you should delve a bit into the benefits of astrology as is pertains to medicine.  Hippocrates practiced by it.  I'll bet if you asked the signs of everyone jabbering on this forum, you'd be suprised to discover that Leo quite possibly rules 3 out of 5.  I discovered years ago that all angels of mercy were Air signs.  Gemini, Libra and Aquarius.  You see?  Astrology isn't prediction.  It's the base of all psychology.  The deepest in-depth study of the human personality ever.  Now, my character breathes.  Thanks a million, Doc!  (My title?  At present, The Liberty Boys)

Practice on!  

Christine

[CCF Neuro[P] MD, RPS]

I try.

CCF Neuro MD

[Christine]

I know you do.  Air is everywhere.  In the clinic hands-on, at the office in-thought, on the phone making-sense, and on-line seeing-it-all.  However do you do it?

Doc Ayerman.  How's that for a novel name?  Characteristically speaking... Dr. Robert Paul Ayerman.  Ficticiously based upon fact.  My recorder is now in over-drive.  Ciao!

C.J.

[CCF Neuro[P] MD, RPS]

Every person's story is important.  The human in the race called the human race, depends of each story as each is unique.  As in a name, each to be rendered important and significant.

CCF Neuro MD

[Christine]

"He left the name, at which the world grew pale, to point a moral, or adorn a tale."  (Samuel Johnson - Vanity of Human Wishes)  "Imagination disposes of everything; it creates beauty, justice, and happiness... which is everything in this world." (Pascal)

C. J.

[Elizabeth - Original Poster]

I really don't understand what Christine's last few comments have to do with my problem of muscle soreness! I posted a question on this site because I am concerned, nervous, and a little bit scared about a problem I think is very serious. I am very interested in seeing what people have to say, what the doctor thinks and reading words of encouragement. I take my problem seriously and each time I see a response in regards to MY post, I hope it is something to help me. I'm getting tired of logging on and seeing this "jabbering" as Christine so eloquently put it, on my post!!!  If you want to chat about astrological signs, please don't do it on my post. Thank you.

[Irene]

Christine,

I can sympathize with you and your problems.  Sometimes the docs here need a mental break too with all the work they have to do.  You mention muscle weakness and clumsiness that comes and goes throughout the day.  I did not see if your doctors ran a MG Assay on you.  My doctors were very shocked to find mine positive after they ran it, they re-ran it and sent it to Mayo, and again it was positive for 2 of the antibodies.  I developed weakness in April, not debilitating, but enough and have clumsiness with hands especially the right hand and apparantly I have lost my gag reflex in the process. I also get parasthesias. Although they cannot dx me with MG as I have a borderline single fiber emg, I am waiting for a re-run of that torture test to see if anything changes.  I have had soreness in muscles occasionally as well.  That may be one option that has not been looked at.

Good luck.

[Christine - I apologize]

Dear Elizabeth,

I truly apologize.  Please forgive me.  You deserve this apology as much as I need to give it.  Again... I apologize.

Christine

[Kristine II]

Dear Elizabeth:

I'm not the other, but rather another, concerned about your condition.  Due to the fact that every symptom you described points at the post-destruction capabilities of "virus" (ugly, havoc-wreaking phantoms that they are), I admire you for holding on as long as you have.  Stamina is definitely in your corner because pain causes physical weakness and devastates the ability to even think clearly.  Please fall-back and re-group for the strength it's going to take for another opinion.  Fresh, like the CCF Neuro encourages.  It is the only way to get the correct dx.  From your detailed description of symptoms, etc, my guess leans heavily on it being an auto-immune disorder.  Good luck hunting the dx and keep us concerned informed.  -Kristine II

[CCF Neuro[P] MD, RPS]

Hang in there.  Life is a journey and you have a long healthy road ahead.

CCF Neuro MD

[truly3]

It sounds to me like a classic case of Fibromyalgia. Maybe not yet full blown, but the beginning of fibro.

[Elizabeth]

My doctor doesn't think it's fibromyalgia - I have none of the pressure points associated with it. Thanks for the suggestions though.

[CCF Neuro[P] MD, RPS]

thanks for the comment.

CCF Neuro MD