Is this ALS

[markt2495]

For the past 18 months or so I have noticed weakness in my left hand and athrophy, I have googled pics and ulnar nerve palsy looks exactly the same. I visited my G.P and was eventualy sent to a hand surgeon. The hand sugeon ran some bloods and said my folate was low - take some vitamins and return in six months, I then noticed that my right leg had started to waste and was gradualy becoming weaker. There is the presence of fasciculations in various parts of my body - hands, arms, face, neck, legs but not all of the time. I also get really bad cramp in my legs and left arm and have noticed that my right hand has started to split like the left. I am under a neurologist after further visits to my G.P. He sent me for an EMG and nerve conduction tests but would not give me the results. I am due to go back on the 5.12.11 but I am out of my mind with worry as I feel as if this whole process is taking so long. I am 33 years old with no history of ALS in the family, I have mild scoliosis and on co-codamol 30/500 for the pain. I also have a hitus hernia which I am px lansoprazole 30mg. My symptoms do not seen to be constant apart from my left hand - is this normal for ALS?
Any advice would be greatly appreciated.
Thank you
Mark

 

[Alyoop]

Mark, sorry that you are going through this worry. It's very hard having to wait for results. I have always been told EMG results at the consultations, but many Drs get their patients back, sometimes after a long wait. My daughter is in the same waiting pattern under the NHS, waiting for EEG and MRI results after a series of seizures.

MND symptoms do not tend to come and go. Usually it presents with weakness, but take a long read of the stickies at the top of the page, that will help you with your questions. Your symptoms could be caused by many different things, so do not get too stressed out about it.

 

[markt2495]

Thank you for your quick response, the weakness does not go, but the fasciculations cramps do. Have had an MRI which came back o.k...that was the hand surgeon who was looking at it though, do you have any idea what other diagnosis I could end up with? This is new to me sorry what are stickys

 

[trfogey]

My symptoms do not seen to be constant apart from my left hand - is this normal for ALS?

If the weakness in your left hand eighteen months ago had been caused by ALS, we would expect your entire left arm to be disabled and useless now. That you still have normal use of the left arm points strongly away from ALS. So, no, this is not normal for ALS and it appears unlikely that you have ALS.

Any advice would be greatly appreciated.

Wait until your December appointment and see what the neuro has to say. There's a very good chance that you are scaring yourself unnecessarily by reading a bunch of stuff that doesn't apply to you. No need to worry about something as serious as ALS until the doctors tell that you actually have it.

Good luck to you.

 

[markt2495]

Thank you so much, I am sorry for invading this forum without cause. Yes I am worried and things seem to be getting worse now, the only reason I started to look at ALS was due to a dr in work (I am a mental health nurse) who informed the symptoms pointed to mnd. The bloods that I was sent for had kennedys disease asked for too, results Dec. I will stop panicking now...if it turns out I have ALS at least I know there are so many knowledgable and caring people out there. Good look to everyone going through this worry and to all with a diagnosis

 

[Alyoop]

Shoot the doctor! Just kidding......he had no right to say that. Hope he was not a psychiatrist.

 

[markt2495]

Yes the Dr was a psychiatrist! The muscle tone has become really soft in my arms and in my legs and I also my it difficult to stand for long periods, when I said my symptoms were not there all the time I meant my fasciculations, they seem to be present in all parts of my body at various times during the day/night then none for hours. The spasms in my hands legs seem to be worse if I have slept for longer too. Well, appointment on Monday..I just hope if it is definitely not ALS the neurologist is able to say what is happening to me.

 

[Alyoop]

Mark, best wishes for your appt on Monday. I hope it goes well. Make sure you write all your questions down and don't leave until you are satisfied with the answer. If you don then you will end up searching for answers here again. Check back andlet us know how you got on, it's always appreciated by the folks here trying to help.

Aly

 

[laurel]

Mark as the others say it could be almost anything. My husband has CIDP--with the variant being MADSAM which is treatable. Hubby has an atrophied rt.hand/forearm and drop foot on right foot. He was misdiagnosed with Carpal Tunnel, had unnecessary surgery, wasted further to the point of not being able to use a key in a lock or use eating utensils etc. First neurologist farted around for nearly 3 years and misdiagnosed him, but a second opinion with a neuromuscular disorder neurologist diagnosed him within a month or so and started him on IVIG. Best of luck and think positively. I know the stress and waiting can be all consuming. Hubby got his EMG and nerve conduction results as they were testing with the second neurologist.
Laurel

 

[trfogey]

I just hope if it is definitely not ALS the neurologist is able to say what is happening to me.

This is an unrealistic expectation. Most neurological ailments (beyond simple things like pinched nerves) take time to diagnose. You are setting yourself up for a big disappointment if you think that one visit to a neuro will give you an answer. Some things, like ALS, may be eliminated as possibilities, but other things may take time and multiple observations to be settled.

You are only at the beginning of a journey. It may take months to complete the journey, so set your expectations accordingly. Good luck.

 

[notme]

Any patient has a legal right to copies of all test reports. Don't let them tell you otherwise.

Fasciculations aside...what did the neuro say about the atrophy? Did he observe it or did you?

The most common cause of hand atrophy is a trapped nerve. A NCV will show it pretty quickly. As others have said, once the easy things like trapped nerves are ruled out, the other things can take a long time to diagnose.

Fasciculations without accompanying atrophy are most likely benign.

Severe cramps can be benign as well. low. Utrient le els can cause them. As a nurse, I'm guessing you spend hours on your feet.

Remember it can only be Als when it can't be anything else!

 

[markt2495]

Hi and thanks all who responded. I have been to the neurologist and would like to update for any opinion or advice. He said that I may have something called multi focal neuropathy and is starting me on ivig for three days from Monday, he will repeat the emg, which wasn't too good in two months, if my symptoms do not improve he will make a diagnosis of mnd. Is this just another process of elimination or is there a good chance that I may just have multi focal neuropathy, I know you can't make a firm diagnosis but it would help if I knew if everyone has this before diagnosis....I am clinging on to hope for nothing? Sorry to sound so negative but it hasn't really sunk in yet what he said.
Many thanks
Mark

 

[Al]

Mmn is much better than ALS (you'll live longer) and progression is slower. 1 of 4 doctors thought I had it. Allergic to IVIGG so didn't work for me. I'm still here 8 yrs. later and have ALS. Hope it works for you.

AL.

 

[markt2495]

Thank you Al, I couldn't find the prognosis for mmn.. 8 years fills me with confidence, I am afraid that I am a person who focuses on the two part of the two to five years written on the Internet. The support that you members give to new people is fantastic and so much appreciated, I hope with time I may be be able to help too

 

[Alyoop]

I asked my husband for you, and he said that it depends on which nerves are affected and why you have it. It can be caused by cancer and other causes. The speed of progression would depend on the cause, nerves affected and the individual.
He said to look up Lewis Sumner syndrome, it may help. It can be helped by IVIG , but you know that already. I had IVIG for 6 months but developed an allergic type reaction as well, causing a type of lupus.