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progressive muscle weakness

PostPosted: November 4th, 2014, 3:30 am
by German2
Hello!

Actually I am scared as hell again. My legs feel weak since weeks. Now I have swollen tendons in my knee caves and strong pain in left knee when I walk or in the night. Yesterday evening I had strong edema in both of my lower legs. (My left ankle ist still swollen)
Could this be a sign of overexertion due to muscle weakness??

I habe the impression that the sides of my upper legs are getting slim. It is very hard to do my exercises for those part of legs.
There is a dent on my shinbone, when I flex my foot upwards.
Last but not least my lower arms got slimmer and my thumb muscles decline.
All that happens symmetrically. It seems that I have a diffuse muscle decline whole body wide. But as it is symmetrical, it is hard for another person to identify...
Additionally I was able to stretch my pinky togehter with my ring finger from the middle finger. Now it is no longer possible to same extend (could this be due to my sulcus ulnar syndrom?). I am scared as hell!

My EMG of one leg muscle, left side, was clean, a few weeks ago. No twitching acutally....

Can you provide me with your thougts? I am back with my nose in the dirt...

Re: progressive muscle weakness

PostPosted: November 4th, 2014, 4:27 am
by Yuliasir
As a person with chronic lymphostatic edema on both legs I must say the reason is most often a vein valves. prolonged sitting or standing makes veins more filled up wth the bllod, and valves got failed to pump the blood up. We got more blood in veins and part of lymph just goes out of the vessels and infiltrate the tissues.
Certain days close to periods are also increase water content in our body. For example. sorry for intimate details, for now i have 24 hours edema on my feet before periods and 12-14 hours of edema when I am in other phases of my cycle. I am extrememly sedentary due to job and have to go to a very painful special massage :) hope this would help me a bit. However venous valves failure may happen to teachers, sales managers, and even to those who runs or walks too much. Do the Doppler of your leg veins. EDS affects vessels tissue too and many EDS people note they veins are really buldging because of more elastic walls tissue and less efficient counterpressure they excert therefore. I had seen one such girl of about 22-25 years old - she had extremely prominent hands veins not only on the hends but on the arms too where most of people do not have them.

Re: progressive muscle weakness

PostPosted: November 5th, 2014, 2:58 pm
by German2
I indeed was in that period...but today I had feets like an elephant. Also my face was swollen. More and more joints are affected and get painful and weak. Today I had an MRI from left knee, but meanwhile also me right knee cave is swollen. I showed to the person who did the MRI and of course she agreed it is very swollen. My inflammation values are ok. no signs of an active inflammation going on. I talked to a colleague of my gp. He said, he will check some further values, like ck, ldh, ANA.
The doctor in the hosiptal told me by request during my stay, my ck level was 190...Today I received the lab report of hospital (with the hint "not validated") that my ck level was 58. So very normal, too. I am curious to know my present ck level. The weakness of my body got a bit better due to exercises. But the effect is swallen tendons now...I don't know what is going on. I just hope, that it is not a sign of....

Re: progressive muscle weakness

PostPosted: November 5th, 2014, 3:17 pm
by Yuliasir
believe me in few days the water will go off. Try some tea with milk, or green tea (this stimulates urine production). Massage also helps.

Re: progressive muscle weakness

PostPosted: November 6th, 2014, 11:25 am
by German2
Was at gp as an emergency case...Felt so totally weak, pain, dizzieness...I have to eat tons of food to keep my energy. But he treated my like I am totally stupid or a little child. Called me "sweetheart". All my bloodwork came back normal. Even ck level and ldh were in range...it would be from psyche. There would be no water in my legs (My foot joint is very swollen). All normal, he said. I would have a vein insufficency and I should do more sports...But I do my exercises every day! I told him to have ehlers-danlos...He looked into his book and said...but your weakness is not explainable by that..Yes, maybe. Like many of you, my weird symptoms can not be explained by a gp and maybe some of you share the feeling of not be taken serious. Ok. My ck level is normal.That is the only good news...It is so sad. I was someone with a good job, a little bit of success. Now I am treated like an idiot, not be taken serious, my insurance tried to get rid of me...and found s.th. to kick me out. Everything goes down the drain actually....Sorry for this self-pity talking. This is the first fight in my life which it seems like I am going to loose.

Re: progressive muscle weakness

PostPosted: November 6th, 2014, 12:00 pm
by Davey0720
Look, I've been there last year. Actually I was in the same place you were in. I was actually laughed at about my fears of ALS by two ER doctors and was only reassured by my Family Doctor and a Neurologist who is a family friend. I have Health Anxiety for nearly 25 years. I have feared nearly every cancer and disease known to take us way to young. Look you anxiety is taking over your life. I watched this clip from Rocky a thousand times. From about 1:30 to 3:00 minutes on the video watch it and start telling yourself its time to get yourself off the ground and fight. I've fought for my life way to many times and refuse to give up and I don't want to see someone else do the same. Yes this clip is from a movie but it is by far one of the most inspirational videos I've seen. Like said in the clip: we live in a cruel world and life can knock you to your knees and keep you there permanently if you allow it.But, its not about how hard you can hit, its about how hard you can get hit and keep moving forward. Forget this ALS fear, I know its hard to right now but seriously forget about you being ill. Stand up and tell yourself its time to move forward. Watch this video anytime your fears kick in. I was in the same place last year and can give you any advice in taking your life back.

https://www.youtube.com/watch?v=D_Vg4uyYwEk

Re: progressive muscle weakness

PostPosted: November 7th, 2014, 1:38 pm
by German2
Hi there,

now I have the outcome of the MRI of my left knee (pain). There is so much wrong in it, that it is hard to sum up. Degeneration of inner and outer meniscus, small joint bruise, small Baker cyst, Lateralisation of kneecap, Ganglion at cruciate ligament, with uplift of ligament....and a bit more.

If it would be rheumatic, this would explain why I feel sicker and sicker every day...but there are no inflammation values in blood test. I am 44. My aunt had this in her 70's...The dx of my back is not much better.

The baker cyst would explain the tingling in my left foot, as I read in the internet. But how does this all come? I had an emg in one muscle of left leg. If it would be a muscular problem, I hope it would have shown up there...I hope so much.

Re: progressive muscle weakness

PostPosted: November 7th, 2014, 1:43 pm
by LKP1231
I'm certain it would have shown up. I'm sorry you have so much wrong. I'm glad it's not *** but I know you are in pain and discomfort and have worries. I hope that now that you know what is going on there can be a recommendation on what to do for it.

Re: progressive muscle weakness

PostPosted: November 8th, 2014, 4:21 am
by German2
Hopefully you are right. I have whole body shaking, slight temperature and my sick feeling gets worse. What can I do, if my gp tells me "DArling you don't have anything...". I feel so helpless. Can hardly get out of my bed..