Muscle weakness, joint pain, breathing problem and numbness on toes

[Helen1967]

Hi, I’m 39 years old female, it’s about two years I’ve having weakness in my muscles and it’s getting worse.It started about two years ago with a very high heart bit (180 bits in a min.) I went to the hospital and my heart was in a good condition, the next day I got a little and stable weakness in my lower legs, I didn’t take it seriously, until a year ago it started to get worse, the weakness in my legs was getting more and after few weeks I had in whole my body, but only the muscles. In that time I had different kinds of blood test, MRI, EMG. Everything was negative except a Syrinx on my spinal cord. My neurologist said it is too small and can not be the reason for all my symptoms. The weakness is getting less with well sleeping, good breakfast, movement (not heavy sport or exercises) but it gets worse by not sleeping enough, resting too often and not moving. When I’m moving I have to rest and lie down for half an hour. The weakness is not only in my muscles but also my JOINTS, when I walk I can feel the weakness of my joints by the pain, special on my right side of my body. When it’s cold I’ve more pain in my joints special my fingers and toes, sometimes two of my fingers get completely white and numb. When I’m walking in a warm weather, I get swollen hands and feet. I’ve also breathing problems special if I don’t move or I’m lying down on the coach. The muscle weakness is in toes, legs, belly muscles, arms, hands, fingers, shoulder, neck and jaw.My toes are numb and the left leg has less reflex reaction than the right one. The weakness is one day less than the other.

[CCF-Neuro-M.D.-PW]

I cannot give you a clinical diagnosis over the internet unfortunately as this site is purely educational

Without the benefit of the physical exam it is hard to know whether there is objective clinical musclw weakness or not, which is important in the diagnosis. There are some neurological disorders that involve attacks of muscle weakness with normal strength in between like periodic paralysis or myesthenia gravis. Chronic weakness, which may be asymmetric and assocaited with minor sensry symptoms could suggest CIDP (chroiuc inflammatory demyelinating polyneuropathy). Analysis of spinal fluid is important in the diagnosis and may show an elevated protein level. EMG may also suggest the diagnosis, otherwise the diagnosis is clinical. There are some anti-body tests that are sometimes helpful (anti-MAG antibody) in hte apprpriate situation, as determined by your neurolgist.

Good luck

[Helen1967]

Here comes the rest...
The weakness is one day better than the other day but it’s not going away, so one day I feel great and the other day for any reason is coming back. I’ve also TWITCHINGS in all over my body. I’ve had cramps special in my left leg and most of the time when I’m sleeping. My fingers and hands have cramp when I’m opening the door with the key or opening a can. My tongue is stiff and strange, sometimes difficult to talk but I never had problem with talking. The back of my neck has a kind of strange feeling special with more stress; the strange feeling is on upper side of my neck.
I’ve no sleeping problems, no swallowing problem, no visibility problems and no sensation problems and my muscles didn’t get smaller yet. I feel good when I stretch my muscles.  
The last few days the weakness is different, it’s like more and painful if I walk special on left side, legs are heavy and sometimes take an effort to move them, I’ve a kind of shaking when I’m using my left arm and my left leg, my toes are very strange, next weak I’ve another EMG and blood test for anti bodies. My neurologist didn’t want to give the EMG or blood test; I had to beg him to do it.

Please can someone help me with this?
can a syrinx be a reason for these effects?

[lddbusy]

Hi I have had numbness tingling etc. in my hands and feet, weakness,aches in my joints,back etc. Years ago they said I had MS but I dont think so they came up with that from an MRI but did a spinal and it was normal (people with MS show positive with the spinal tap)anyway if you find out anything let me know Im tired of going to doctors Ive had ever test to think of I'll be praying for you

[Helen1967]

Hi 6t5frlane,
I did have lyme test and it was negative but no western blot test. Can herpes be a reason for all these symptoms?!!

[Helen1967]

Thanks IDDbusy, I'll tell you for sure..but did you try to exercise? try it but take it very easy and first ask your dr., it sometimes helps me to feel better.
But does your weakness comes and go? one day more than the other?

[Helen1967]

I guess this site couldn't do any good neither.

[hrgrad]

I saw this special on TV about this woman who had sclederma.  It took them forever to figure out what it was.  When I read your description, that was the first thing that came to my mind as the woman on the documentary had some of the same symptoms.  I hope you find what is causing your problems.  Good luck to you....

[zzzzzzzzzz]

Hey Helen - in response to your comment above (I guess this site couldn't do any good either). What did you mean by that?. In a few days, you will have an answer from a neurologist - don't be so quick to judge - you have to keep believing you'll find an answer. And do you realise how lucky you are to even get your question posted? I have been trying for months - nearly every day - often more than once, at different times and still no luck! But I still keep trying because in all my research I've done into what the hells wrong with me, this is definately the best site I've found! I believe the Neuros here explain things far better than most and often come up with new possibilities for me on other people's questions. I feel for you in your situation - many of us on this site are in the same boat as you. I have had most of the same symptoms as you - plus visual and sensery symptoms - classic MS symptoms, but with a negative MRI. I am 37 yrs - problems started at 19 yrs. A long time, but I refuse to give up hope of an answer (and getting my question posted). Not much else to say except good luck and I wish you well - and perhaps its time to see another neurologist!

[Helen1967]

I didn't mean to hurt anyone but just very tired of searching.It's 3 years I'm having these problems and no dg.
I also tried very long time to post my comment and it's a week and I have no answer yet, I'm checking my comment every hour, day and night.
But about posting the comments you have to try it at 9:30 am cleveland time and try it for an hour.
I wish you the best and success.

[Helen1967]

Dear Carol, thanks for comment, I don't all of the symptoms and my MRI was ok, only a syrinx on my spinal cord.
I think my symptoms are more like MG but is it possible to have MG and no problems with swallowing, talking or sight? and I get heavy and strange feeling in all over my muscles if I lie down long.

[Helen1967]

First I want to thank you for your time and kindness.

MG is Myasthenia gravis. MS is more localized and the twitches are only in effected part, but my weakness and the twitches are all over the body. After exerces is more in my legs.
I did post my comment in the site you sent me. I never had fever so it's a kind of strange if I have a bacteral d. and no fever.
and I wonder if it will be dangarous for me if I use antibioticas for lyme when it's not LYME?

[Helen1967]

Dear Dr.
Thank you very much for the reply.
I just had EMG and it's normal, my dr. gave a blood test for MG antibodies but the result is not ready yet. I have done all kind of blood tests(IgG,IgM,thyroid,etc..), MRI and EMG, even spinal tap(last year) but all negative. My dr. said today that he does not know what else he can do, he couldn't find anything "POSITIVE".

[zzzzzzzzzz]

Hi Helen,
Good to see you finally have some input from the Neuro. Is it helpful do you think? I hope so. Best of luck and it would be great if you could keep us posted on any developements. My best wishes to you :)

[Helen1967]

This is to people like me who after years dont know what is going on! did you ever had Lyme tests? they say "western blot" is a very sensitive test, but an expensive one.

[princezz326]

A related discussion, WHAT EXACTLY IS SCLEDERMA???/ was started.