Developing new issues

[Robb]

Dear All,

I was on here sometime back and have tried to ignore every possibility that i might have an MND, but unfortunately i have been pushed to come back on and request all of you to bear with me and answer a few simple questions im concerned about.

Mainly my problems started back in Aug of 2014, which included twitching and feeling tired, docs ran alot of test and nothing came up positive, there were some false alarms regarding auto immune issues but nothing conclusive, anyhow things dragged on for a year, last oct of 2015 i developed some numbness in my left hand in the pinky and ring finger so i went down to the doc, he performed a EMG and NCV and ended up doing the whole body since it would cost the same, i should mentioned this is the 3rd EMG ive done in past year and a half , everything was normal but the EMG and NCV this time did show some very minor muscle degeneration in my left dorsal and evidence of ulnear nerve entrapment, its showed a positive sharp wave but no fabs, however the doc said it was due to the entrapment and probably had nothing do with a MND, anyways the last 6 months have been worse, my hand hasn't recovered, furthermore my left hand feels weaker and get tired much more easily compared to my right hand, in fact if i try to exercise them both the left hand totally drains out after a minute or so and i have to rest it a while to gain some strength back, apart from that i feel like my left arm has gotten smaller as well and i get a bit of twitching sometimes on there as well especially triggered by exertion, last few weeks my left leg has been giving me issues as well, alot of twitching especially on my thigh and the area right above the foot and Quadriceps and my left foot feel weaker and unstable when i walk sometimes, i honestly don't know what to do anymore its almost a year and a half since this all started, is it finally starting to show now ?? or will i still be left in limbo, i would have thought that if i had an MND i would already be in a wheel chair by now or have symptoms much more obvious than this, anyhow any advice would be much appreciate.

Thank you,

 

[Nuts]

Robb, if the doctor felt you symptoms were from entrapment, were you treated for it--was anything done to relieve the entrapment? If not, I might expect it to get worse over time. As you know, many things can cause twitching and the feeling of weakness. MND will cause you to actually fail, not feel weak. My husband felt find until he fell and couldn't get up--no feeling of weakness.

 

[Robb]

Thanks for your reply Nuts, the doc said i had to monitor it and if it got worse i might need surgery to correct it, but when i went for a second opinion the other doc said its probably best to leave it and try to heal itself, the main thing they check for is atrophy and strength my left hand isn't showing too much of that during my last docs visit so he said i shouldn't get surgery on it until it starts to get worse, sometimes the surgery can damage the nerve further according to him. But that still doesn't explain the other symptoms

 

[Nuts]

What does the doctor say about your other symptoms?

 

[Robb]

Well most of them have the wait and see approach, last year one doc suggested fibromyalgia another doc said it could be due to sleep apnea and the body isn't getting enough rest due to that, unfortunately nothing conclusive. The Emg guy just keeps telling me to check every 6 months, honestly what kind of life is that, wouldn't i know by now if i had it ? its been a year and a half since the first symptoms started

 

[Atsugi]

Robb, you said you came back here due to the "possibility that i might have an MND."

I read your post. Still waiting to see what "possibility" brought you back. There's no ALS in your post.

Your "other symptoms" are either about feeling weak or about weakness which improves with rest.

There's no ALS there.

In ALS, once a muscle is weakened, it can't come back. This is because ALS has destroyed the nerve in your brain that normally controls the muscle. Once ALS begins to destroy a nerve, it gets worse; it can never get better.

 

[Robb]

Hi Atsugi,

thanks for your reply, im well aware of that and have followed everyones advice on here for many months now and kept away but unfortunately the symptoms i have now are even more puzzling then before, my left hand and arm have definitely got weaker but not in the sense that i have lost motor functions as yet but i do have trouble doing tasks i could easily do before, the twitching does get worse with exertion and i can feel that my index finger can not function the way it used to, even scratching my head or ear with it is a challenge and the finger tends to slow down after a few seconds also my left foot and leg feel burned out all the time and my foot feels floppy when i walk, these things never happened before and have just started recently, now ALS wise the most confusing part is that everyone has their own story, there's people who say they've done 10 emgs and all were clean and then suddenly ALS kicked in, then there's the ones that have the same issues such as a burn out feeling in a limb and weakness but the actual loss of motor functions happen years later, its things like that which make people like me come back on here even though thats the last thing i want, i mean bothering people with questions who are suffering or have suffered the loss of people close to them to this terrible disease is the last thing i want to do but im left with no other choice in this case.

 

[Atsugi]

Sorry to see that you're getting conflicting advice.

Who had 10 EMGs?

 

[Robb]

thanks and yeah the conflicting information is definitely one of the factors that plays into our fears , in regards to the 10 emgs i met a lady at the hospital during one of my check ups, she told me she had around 10 done in a span of 3-4 years and they finally told her it was Als when her right leg developed foot drop and she was having trouble climbing stairs, she said all emg's came out clear before that. I dont want to call her a liar but she was on a wheel chair in the doctors office...

 

[Atsugi]

10 EMGs clear: Then she develops foot drop, a classic starting symptom of new onset ALS.
Sounds like she didn't have ALS prior to the foot drop.

Anyway, that's not your case.

I think I've commented on all your symptoms. Let us know how it goes when you see a neurologist.

 

[Nikki J]

There are people who have umn findings first so their emgs look ok. In the cases I know more information about it seems these people were always told there was a serious problem from the start. The ALS criteria require EMG findings so it is not ALS until the findings meet the criteria. That does not mean the doctors dismissed the patient. You have to find a doctor you trust and work with them. 6 months intervals for emg are standard

 

[Robb]

Thanks for your reply nikki, the last neuro i went to did a physical examination on me and said he still didn't see any obvious signs that i could have an MND as my strength was alright and reflexes were not brisk and seemed ok, but the issues i brought up earlier are quite hard to explain to the doctors as well as its weakness which is brought on by exertion and it improves to some extent with rest especially in my left hand, index finger and foot and its accompanied by twitching, that being said i saw this doctor a few weeks ago however the other neuro i saw last oct who did an emg back then is a different story, no doubt he did find issues with my hand due to the positive sharp wave and ncv did pick up some issues due to the ulnear nerve entrapment which still hasn't healed, my only issue with doctors like that is that they keep pushing people to do EMG's even if its on 6 month basis, even though their physical examinations don't find the need to do one . That being said im sure if i went back to him he would want me to do another EMG as its nearing 6 months, unfortunately in this part of the world its more of a money making scheme rather than helping patients. My main purpose to come back on here was to see if anyone suffering from ALS might have the same symptoms as mine or if it started off that way, but you and Atsugi have been very kind and helpful either way, i really appreciate it.