Need some advice asap

[LoneWolf]

Hi everyone, I am new here.

Bit of background info on me: Male, 25, from the UK, and fit.

Symptoms:

November 02-Wasting of muscles in left hand-no pain or sensory less. Restricted to intrinsic muscles. All fingers affected in some way, thumb being weakest. This all happened up to May 03 I guess, it then stabilised. I can't quite remember if there was any weakening between Sep 03-September 04 but there might have been abit-very minor tho unlike before. All seems a blur.

I eventually got diagnosed with Monomelic Atrophy and there was a period of stability.

My thumb went a little weaker during December 06 but I was ok as I had been diagnosed and thought my disease had ended. Right hand became bit "sluggish" but no atrophy whatsoever-its noticeable when i keep bringing all the fingers together then apart, then together e.t.c but then it would bev ok if i rested for 2 seconds. Strenghwise it is normal and well functioning, just a very minor symptom as I want you guys to know it all, but this really does not affect me unless I really push it.

Now January 2009-Thumb has gone more weaker in left hand, can't believe it I am trying to see the neuros again. Can this really be MMA now? The timescale seems too much and im worried I have something else like ALS.

 

[LoneWolf]

Why are people reading this but no response,thought this was a help forum :S

 

[ZenArcher]

That's a great way to get help.

If you're concerned go see your doctor.

 

[hopingforcure]

We all think that a doctor would be a better source of answer's for you.. We can only guess, we are not doctor's, nor are we here for diagnosed. A doctor will be able to physically exam you and send you in the direction he or she thinks appropriate.
We will be here for support or questions or guidance, but we cannot offer anymore than that...

 

[LoneWolf]

Whatever man, saying my attitude is a great way to get help. It's just I saw 60 odd people reading this and no one saying a word.

Like I said in my first post I have seen neuros for a long time but not in the last 2 years. After my january 09 weakness of thumb I immediately contacted my doctor to arrange for me to see a neuro. It still hasn't got through, so in the meanwhile I just wanted some help. Is that a crime?

 

[LoneWolf]

We all think that a doctor would be a better source of answer's for you.. We can only guess, we are not doctor's, nor are we here for diagnosed. A doctor will be able to physically exam you and send you in the direction he or she thinks appropriate.
We will be here for support or questions or guidance, but we cannot offer anymore than that...

Thank you, I just wanted some guidance. There is plenty of experience on this forum which I thought might help me.

 

[planningguy]

Edit: Sorry for some redundant information there was a new post that showed up while I was typing

Lonewolf,

Contrary to what you might expect, the weekends here can often be quieter than the weekdays. Keep in mind that many of the regular posters who are PALS have difficulties that can make it hard to read and type (some are typing with one hand, a single finger, or even their eyes).

Even simpler, sometimes a post can get lost in a flurry of new posts. It's not intentional, and a gentle "bump" post is usually all that's needed. Most here go above and beyond reaching out to those with questions.

That said, I would echo ZenArcher and hoping for a cure. Try to get back in to see your neuro as soon as possible. I personally know virtually nothing about Monomelic amyotrophy, and have only heard it mentioned a couple of times on this forum as an alternative diagnosis. I have also heard that although most of the time MMA plateaus, this isn't always the case, and it can jump to the opposing limb. Isn't O'Sullivan-McLeod syndrome that is essentially a progressive MMA variant?

In any case, it is a medical specialist rather than any of us here that can split those hairs, and advise you.

Best of luck,

Robert

 

[rose]

lonewolf,

Many people probably have read your question, but don't have any suggestions or answers to offer. There are some members that have a greater understanding of neuromuscular problems, and eventually one of them will see it, and weigh in on it, but it takes a while. Good luck, and try not to worry, you should get some feedback in time, but like hopingforcure said, its the doctors that can examine you and review your test results & so forth. Good luck

 

[LoneWolf]

Edit: Sorry for some redundant information there was a new post that showed up while I was typing

Lonewolf,

Contrary to what you might expect, the weekends here can often be quieter than the weekdays. Keep in mind that many of the regular posters who are PALS have difficulties that can make it hard to read and type (some are typing with one hand, a single finger, or even their eyes).

Even simpler, sometimes a post can get lost in a flurry of new posts. It's not intentional, and a gentle "bump" post is usually all that's needed. Most here go above and beyond reaching out to those with questions.

That said, I would echo ZenArcher and hoping for a cure. Try to get back in to see your neuro as soon as possible. I personally know virtually nothing about Monomelic amyotrophy, and have only heard it mentioned a couple of times on this forum as an alternative diagnosis. I have also heard that although most of the time MMA plateaus, this isn't always the case, and it can jump to the opposing limb. Isn't O'Sullivan-McLeod syndrome that is essentially a progressive MMA variant?

In any case, it is a medical specialist rather than any of us here that can split those hairs, and advise you.

Best of luck,

Robert

Thank you, I apologise if I offended anyone. Yes I have read up on that condition on the internet, but I can't find more information on it. There was a group about MMA on facebook, apparently this condition can last 10 years then it stabilises. I just don't know what the future holds, how much more wasting will happen, it's such a nightmare, but I guess i'll have to bide my time.

 

[LoneWolf]

lonewolf,

Many people probably have read your question, but don't have any suggestions or answers to offer. There are some members that have a greater understanding of neuromuscular problems, and eventually one of them will see it, and weigh in on it, but it takes a while. Good luck, and try not to worry, you should get some feedback in time, but like hopingforcure said, its the doctors that can examine you and review your test results & so forth. Good luck

Many thanks Rose. I'll hang in and hopefully my referral will get through to the neuro. Sometimes I think why bother seeing them, they discharged me, and there is no treatment whatever I have, feel like hiding away at times and just see what happens.

 

[Marjorie R. Wilcox]

Lonewolf,
Sorry if we let you down. It is true, we aren't on as much on the weekends.... and we aren't able to diagnosed, only compare you to what's happened to us.

I can tell you that because you are 25 and "fit" otherwise, I wouldn't take any bets that you have ALS. There are tests that a neurologist would do if ALS was suspect, like a CPK test of your blood, an EMG of the hands, and many tests of your reflexes etc.

I don't believe anyone wouldn't agree with me here, that if you had ALS you could not consider yourself fit. You would be staggering when you walk, or have trouble picking up your feet, or slurring your words, or having trouble swallowing... muscle atrophy, with obvious loss of muscle, say in the calves etc. Pain and loss of agility, balance, weakness, shortness of breath, trouble sleeping, spasms or twitches.

Then again, if you have any of the above that could mean something not ALS.

Sad, but true, it takes months or even years to have significant symptoms that can be diagnosed with ALS.... unless you had very fast progression, and very sadly that does happen to some. A neurologist has to see you and make determinations and tests. If the n is a good one, you'll get prompt attention.

Rick and I wish you all the best, and we're counting on your getting answers that help you accept whatever you must deal with. We'll be watching and hoping to hear more from you.

 

[rick/Wpg]

Lonewolf...just a thought and one of our trusty moderators can correct me if I am wrong....but at any one time there are a ton of people viewing the forum that are not actually members and can not post. They may be looking at the post and be counted as a 'view' but not be in a position to respond.
At any rate...everyone is right...get to a doc!
Rick

 

[LoneWolf]

Lonewolf,
Sorry if we let you down. It is true, we aren't on as much on the weekends.... and we aren't able to diagnosed, only compare you to what's happened to us.

I can tell you that because you are 25 and "fit" otherwise, I wouldn't take any bets that you have ALS. There are tests that a neurologist would do if ALS was suspect, like a CPK test of your blood, an EMG of the hands, and many tests of your reflexes etc.

I don't believe anyone wouldn't agree with me here, that if you had ALS you could not consider yourself fit. You would be staggering when you walk, or have trouble picking up your feet, or slurring your words, or having trouble swallowing... muscle atrophy, with obvious loss of muscle, say in the calves etc. Pain and loss of agility, balance, weakness, shortness of breath, trouble sleeping, spasms or twitches.

Then again, if you have any of the above that could mean something not ALS.

Sad, but true, it takes months or even years to have significant symptoms that can be diagnosed with ALS.... unless you had very fast progression, and very sadly that does happen to some. A neurologist has to see you and make determinations and tests. If the n is a good one, you'll get prompt attention.

Rick and I wish you all the best, and we're counting on your getting answers that help you accept whatever you must deal with. We'll be watching and hoping to hear more from you.

Cheers for an informative reply Unfortunately, every test that has been done on me has come back normal, so although it may rule out ALS, it doesn't help diagnose me. They suspect that MMA may be due to death of anterior horn cells in the spine but nothing can be really done about it currently. It's basically a type of spinal muscular atrophy.

I know this may have been posted many times or this may be a scam but have any of you looked at this site since alot of you are from America? I hope it is true because there may just be hope for alot of people in distress.

 

[BLPhill]

Where is Geo when you need him?:twisted:

 

[joelc]

I hesitated approving this link (LoneWolf) but thought everyone is mature enough to discern truth from fiction.
If Al, or anyone objects to it please let me know.