Legs weakness

I have a question: Does someone of you have weakness to the legs, problems of coordination and fasciculations? It is the most invalidating symptom for me...I am really really sad, I don't know what I have...(i have these symptoms since january 2017...)

 

It's not really a hallmark symptom of ME;
have you seen a specialist yet? (question also based upon your introduction post)

I mean forums are great, but you deserve to get properly diagnosed by a specialist and not by forum members...

 

First,thankyou for the reply!
I have seen twice a neurologist, a very good neurologist, ex primary of neurology in Tuscany, he has made me an emg and it has emerged a light neurological suffering, then I have made a lumbar mr and I have seen the neurologist again that has told me the two exams were corresponding and that I have a lumbar radiculopathy.
In the summer I have also seen a rheumatologist and made blood exams for the rheumatisms and it is everything negative...
So he confirmed the diagnose 'radiculopathy' but i have all over my body strange syntomps, not only at legs, i also have fasciculations and a strong fatigue after i make something phisically...I mean, I know people with herniated disk and they are not in my conditions...I will probably see next week my house doktor but I am tired because all around me think that I am doing exams and visits without reason and i had stop for some months, thinking 'maybe it will just stop itself,if I ignore everything'...but I am still not good!

I hope you will understand my english

 

Your english is really good Albgirl. 100% understandable what you are saying here.
If you suspect you are suffering from ME besides Radiculopathy I hope someone here or your GP (house doctor) can point you in the direction of an ME specialist in Germany.
I've read the waiting list for Charite in Berlin is quite long.
In any case if you meet these criteria: http://me-pedia.org/wiki/Canadian_Consensus_Criteria than do not give up before you get properly diagnosed.

 

Yes, leg weakness is a significant symptom of mine, along with coordination issues.

 

The Charite only accepts patients from Berlin/Brandenburg (new rule since January 2017). The rest of Germany has nowhere to go.

 

What is the suggested treatment and expected progression for lumbar radiculopathy? What did your neurologist say about the expected prognosis of this condition?

I know nothing about radiculopathies but if there is a treatment and you would respond to it you may be able to rule out ME if your reaction to physical exertion goes away because of this treatment. If you do suspect your symptoms might be because of ME you are not missing out on treatment for the time being, but it is probably a good idea to try to not go over your limits. You know, so you do not trigger that strong fatigue after doing stuff, if that is somehow possible.
If you are in Germany there is not much the medical system has for ME patients (to be very direct, it is probably a good idea to never mention to any neurologist that you suspect ME.), but if you want to rule out other stuff, in my personal experience the university clinics are often years ahead of average doctors.

I do have problems with coordination (gets worse with increased pain) and occasionally weird muscle twitching that may or may not be like the fasciculations you speak of, but that does not help much with the question of where your problems come from because the cause could be different. If you want you can try to describe what you feel after doing physical things, or just try to see for yourself if your experience matches the Post-exertional malaise described from the link Mattie posted.

Don't be shy to ask anything that is on your mind, we may not have all the answers but maybe someone at least has an idea to point you in the right direction or something like that.

 

Thank you i read only now the replies...the Therapy was Nicetile 500 (acetil-l-carnitina) and to make long walk (at least 1 hour, but this is in contrast with my weakness!)...i have not seen results, and I am tired even to think to do physiotherapy or something like these...

 

Hi Albgirl... yes I am bedbound and have severe muscle weakness including legs. My neurological tests were normal but muscle biopsy showed severe type II muscle fiber atrophy in thigh. My doctor has since found research in the 80's and 90's that have linked this finding to ME. If ME is a hypometabolic disease then malnutrition and inflammation can both cause this result and I would assume that a lot of people with muscle weakness symptoms would have This finding with biopsies. I don't know why researchers are not looking at biopsies more... I guess due to the difficulty in getting them

 

Muscle weakness is one of my permanent symptoms. It started in the legs after my first viral infection. After the second viral infection, I started having muscle weakness all over my body, even jaws, fingers, ect.

So yes, this is a common ME symptom.

 

Sometimes my legs feel real weak. If I were to crouch down I would not be able to get back up. It is very strange.

 

@Albgirl

Small Fiber Neuropathy (SFN) can cause muscle weakness as well and will not show up on an EMG. I have significant SFN in my legs and as a result I have pronounced muscle weakness in my left leg. The muscle weakness becomes especially obvious when I have to walk up an incline or up any stairs. My SFN was diagnosed by my neurologist using skin punch biopsies.

 

I've had ME/CFS since 1990 (I meet most of the diagnostic criteria that I've read).

I've had muscle twitches ( fasciculations ) since the very beginning. This happens a bit less often now than it used to but I still get muscle twitches. They get worse after any exertion so they flare up whenever I "crash." I did too much over the past few days (had to travel on short notice) and so I am having a lot of twitches in my feet, legs and back as I type this message. And I remember that the muscle twitches got really bad right before I passed out on my first tilt table test.

I sometimes get leg weakness but not as often. One weird thing that used to happen, has not happened as often lately, is that my left leg (always the left one) would buckle suddenly while I was walking. I never did figure out what caused it.

 

I have experienced leg weakness and muscle twitches too. It was worse before I learned to pace myself. Occasionally, one of my legs would actually just buckle under me too.

I experience similar problems with my arms as well though. It usually tends to happen if I do tasks that have too many repetitive actions.

I don't know if the root cause is the same as yours though.

 

I had an unusual feeling of weakness in my legs in my severe years. It was so unlike anything I had ever experienced that I was concerned that it was MS. It felt jelly-like.

I think it was also connected to the jelly-like feeling I had in my spine because I couldn't hold myself up in a chair for long and I also could barely hold my head up. That was in my first few years of severe ME. The spine and neck weakness was worst in my first severe year.

 

I think it is. I'm not sure what definition you're going by, but the CCC states "Ataxia, muscle weakness and fasciculations are common"...symptoms, that is. Could be in one's arms, in one's legs, or in one's entire body like Whitney Dafoe's or Jessica's, the young woman completely bedridden who was featured in the 'Unrest' documentary.

 

That may be so but I don't think there is a good reason for such symptoms to be 'all put down to ME'. We have no idea what the basis would be. On the other hand radiculopathy is a well understood condition where the specific symptoms are explained. I agree with Mattie that it is not a good idea to use the forum as a help to understanding personal problems like this. None of us have enough information about the individual case to contribute medical advice. The last thing we want is for symptoms to be put down to ME when they are due to something else.

 

My legs are nearly always the first to 'go'. I thought this was common?

 

I think on the other forum out of over 100 respondents about 60% said muscle weakness was a regular symptom

 

I wouldn't call it muscle weakness its more like a lack of 'power'.

eta: usually happens towards the end of my 'energy envelope' if I don't stop what I'm doing beforehand.