Old 02-12-2012, 11:02 PM #1 (permalink)
New Member
 
Join Date: 2012
City: Brisbane
State: Queensland
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
wellington is on a distinguished road
wellington wellington is offline
New Member
Join Date: 2012
City: Brisbane
State: Queensland
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
wellington is on a distinguished road
Default Would welcome advice

Hello all you wonderful people.

I need some advice, and to that end - here's my story. I began developing weakness in one arm about 5 years ago. It got weak and never got better. My local doctor and neurologist suspected MS. MS is now out of the picture. Repeated MRIs have shown lesions, but not the right ones. I don't have MG apparently. I possibly have a movement disorder.

I am generally a head-in-the-sand optimist, so have shown not much interest until now. But now, my life is very much impacted on. I now have two weak arms, one very troubled leg. I can't lift my left arm above my shoulder, and have trouble blow drying my hair. I can't hold open a book to read for more than a minute. Apart from the earlier arm weakness, none of my other symptoms started until 18 months ago, and it has been downhill since.

I drop my cutlery and have trouble cutting food. My hands shake. My thumb wiggles. I now have lots of twitches, but only in affected spots and they have come along after the limbs went weak. I tried swimming recently - slowly. I felt pleased with my efforts, but my legs would barely work for the rest of the day, and I needed my cane.

At the beach over christmas, the waves knocked me over and I couldn't get up. It was very difficult - almost impossible - for me to walk on the sand.

I've asked my neuro whether I don't have a neurological condition - just a collection of things wrong with me, he says, no, I DO have a degenerative neurological condition, he just doesn't know which yet. I also have autonomic dysfunction - bowel, bladder, temperature irregularities - he finds these confounding.

I've had nerve conduction studies - no peripheral nerve issues evident. As for an EMG - I had one needle stuck in one thigh - the result was fine.

He says my reflexes are 'off, you are very shaky and wobbly and we'll just have to wait and see'.

Does anyone have any advice for me?

Thank you. I am so sorry to bother you. Good on you all for what you do.

Regards
Lilly
wellington is offline  
Old 02-12-2012, 11:20 PM #2 (permalink)
New Member
 
Join Date: 2012
City: Brisbane
State: Queensland
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
wellington is on a distinguished road
wellington wellington is offline
New Member
Join Date: 2012
City: Brisbane
State: Queensland
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
wellington is on a distinguished road
Default Re: Would welcome advice

I should also add that I am having a problem with my voice. When I put my small daughter to bed at night I read her two stories and sing three songs. I'm having trouble projecting my voice (every night over the last fortnight). It is fine for the first story, but after that my throat? starts to get sore, and my muscles? tired. It hurts.

The only other time this has happened recently is at a family gathering. After about an hour, the same thing happened, and I found I couldn't talk loudly enough without it hurting.

Thanks again

Lilly
wellington is offline  
Old 02-13-2012, 12:54 PM #3 (permalink)
Member
 
Join Date: 2010
City: Highland
State: CA
Country: US
Diagnosed: 04/2011
Interest: I have been diagnosed with ALS.
Posts: 440
kmendsley is on a distinguished road
kmendsley kmendsley is offline
Member
Join Date: 2010
City: Highland
State: CA
Country: US
Diagnosed: 04/2011
Interest: I have been diagnosed with ALS.
Posts: 440
kmendsley is on a distinguished road
Default Re: Would welcome advice

Lilly,
There are a lot of neurological degenerative diseases out there to be tested and cleared from. Having this all starting about 5 years ago means most likely that it is not ALS. I am on a similar journey as yours...not completely the same...but here are some of the tests you need to ask for for the D O C T O R to test if they don't know where to go next

Wilson's Disease- this is lack of copper- easy blood test for this one
Thyroid- probably already checked but doesn't hurt to check T4 levels especially
Potassium- believe it or not. Have dr. do a quick check of this..even borderline too high or low can cause these symtoms.

If none of thesse....more expensive tests....literally these are ones to check last because they are looking at your DNA.
Hungitons Chorea Disease and Ataxia.

Now, I only told you all of these to look at because through your writing in your post you seemed pretty level headed. This is just a direction to go. If your dr. can take it off the list it is good. If your not already, you should be in P.T. to help you out and get up your strength. Good luck and keep us updated.
kmendsley is offline  
Old 02-13-2012, 02:13 PM #4 (permalink)
Very Helpful Member
 
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
laurel laurel is offline
Very Helpful Member
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
Default Re: Would welcome advice

Another one is POEMS Disease. It seems that it is a forgotten,rare and had to diagnose disease, and now many neurologists who are considering CIDP test for POEMS as well. Good luck.
Laurel
laurel is offline  
Old 02-13-2012, 07:53 PM #5 (permalink)
New Member
 
Join Date: 2012
City: Brisbane
State: Queensland
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
wellington is on a distinguished road
wellington wellington is offline
New Member
Join Date: 2012
City: Brisbane
State: Queensland
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
wellington is on a distinguished road
Default Re: Would welcome advice

Thankyou Kmendsley and Laurel. I'm so pleased you could give this some thought for me.

Kmendsley - I have had my thyroid checked and been checked for Huntington's and various ataxias - all negative. However, so far I've not been checked for wilson's Disease. Thank you. I'll suggest this when I see my neuro on Thursday.

Laurel - I will check out POEMS disease too. Thanks!

Generally, my neuro is very determined to find my problem. While he hasn't taken ALS out of the mix (especially given my recent decline) he thinks my autonomic symptoms make it not so likely as other neurological conditions. Whatever I have, he says it is rare, as we've ruled out all the usual suspects.

Both he and I have been content to go slowly until now - testing for this and that each 3 months over the past 18 months - given that my condition has been bothersome rather than life changing. Sadly, I think I'm now moving into different territory. My mobility is becoming rapidly affected. I can't drive, dress my daughter or do her hair.

I'm so happy to have these suggestions. Thanks again.

If any of you wonderful people have any other ideas (and/or thoughts on ALS) my husband and I would be both very happy to receive them.

Best wishes to all.

Lilly
wellington is offline  
Old 02-14-2012, 02:32 AM #6 (permalink)
notgivnup's Avatar
Senior Member
 
Join Date: 2010
City: country
State: Darkside of Moon
Country: OS
Diagnosed: 11/2010
Interest: I have been diagnosed with ALS.
Posts: 816
notgivnup is on a distinguished road
notgivnup notgivnup is offline
Senior Member
notgivnup's Avatar
Join Date: 2010
City: country
State: Darkside of Moon
Country: OS
Diagnosed: 11/2010
Interest: I have been diagnosed with ALS.
Posts: 816
notgivnup is on a distinguished road
Default Re: Would welcome advice

Lilly, It took my docs 4+ years to diagnosis me, taking things off the plate one at a time, trying to fix any and everything they thought could be causing my problems...Leave no stone unturned....one other thing i don't think was mentioned is ...have they checked your B12 which can have A L S like symptoms. I took all those shots to no avail also. I hope and pray they find a curable cause for you soon.
notgivnup is offline  
Old 02-14-2012, 10:35 PM #7 (permalink)
New Member
 
Join Date: 2012
City: Brisbane
State: Queensland
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
wellington is on a distinguished road
wellington wellington is offline
New Member
Join Date: 2012
City: Brisbane
State: Queensland
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
wellington is on a distinguished road
Default Re: Would welcome advice

Thanks for your thoughts Di - and the encouragement! I go through phases of wanting to give up and put up with whatever I have. But, just as I get used to the old symptoms and make adjustments (e-reader instead of a book, automatic car instead of a manual, haircut that doesn't need blowdrying!) some more symptoms arrive or the old ones get worse and I am back on the merry-go-round. I also guess I have a responsibilty to my 5-year old to keep up the search. As you say - I might have something curable - and if I do, I should find out what it is and cure it before any permanent damage.

My neurologist says it sometimes takes up to 8 years! 8 years! I almost certainly won't be using my own arms in 8 years if things keep going at the current rate. On the upside I would be a very fortunate woman to have 8 years and more when compared to some of the wonderful members of this forum who have to make do with so few.

Di, I have had my B12 checked. It is fine now, but was a bit low 2 years ago. I had the shots too.

Lilly
wellington is offline  
Old 02-15-2012, 12:29 PM #8 (permalink)
wright's Avatar
Very Helpful Member
 
Join Date: 2008
City: xxxx
State: xx
Country: US
Interest: I am here to lend a helping hand
Posts: 1,193
wright is on a distinguished road
wright wright is offline
Very Helpful Member
wright's Avatar
Join Date: 2008
City: xxxx
State: xx
Country: US
Interest: I am here to lend a helping hand
Posts: 1,193
wright is on a distinguished road
Default Re: Would welcome advice

Hello Wellington

I'm very sorry about your condition and that you must find yourself here. Your story sure sounds like multiple system atrophy (MSA). If your neuro has not ruled this out, it might be worth a mention. I wish you the best.
wright is offline  
Old 02-15-2012, 09:18 PM #9 (permalink)
HelenL's Avatar
Very Helpful Member
 
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
HelenL HelenL is offline
Very Helpful Member
HelenL's Avatar
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
Default Re: Would welcome advice

I've had several EMGs to diagnose and then later on, confirm, my diagnosis... you said that you only had one needle in one thigh... I would suggest that you get a full EMG performed on your arms and legs. Good luck, and I hope you come back with good news!
HelenL is offline  
Old 02-16-2012, 02:16 AM #10 (permalink)
New Member
 
Join Date: 2012
City: Brisbane
State: Queensland
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
wellington is on a distinguished road
wellington wellington is offline
New Member
Join Date: 2012
City: Brisbane
State: Queensland
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
wellington is on a distinguished road
Default Re: Would welcome advice

Wright

Thank you for your thoughts.

I went to my neurologist today and before I got to the bit where I thought I might raise your suggestion, he did! He said he hoped it was not MSA, but I almost certainly have a neurodegenerative condition, as opposed to an autoimmune condition, and the autonomic disfunction that I have puts MSA well and truly in the mix. He keeps saying that I am too young though. (I am 48.)

Anyway, we are leaving it another 3 months (unless my decline really accelerates) and then we are going to have a serious think about my drugs. I'm a little drug-phobic. At the moment I just take Gabapentin (Neurontin) at night, and pain killers in the day when my seriously weak arm and leg become painful through me trying to make them do things that they aren't really capable of.

He said he thinks that a special scan of my basal ganglia will reveal the problem - a movement disorder or something similar. Unfortunately the scanning equipment (PET scan? MRI?) that is capable of this very technologically advanced scan is not yet available in Australia and won't be for a year or so.

So ... it does look like I might not have ALS, and I almost certainly don't have MS, but instead some other rare neurodegenerative disease.

Thanks again Wright.

Lilly
wellington is offline  
Old 02-16-2012, 02:22 AM #11 (permalink)
New Member
 
Join Date: 2012
City: Brisbane
State: Queensland
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
wellington is on a distinguished road
wellington wellington is offline
New Member
Join Date: 2012
City: Brisbane
State: Queensland
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
wellington is on a distinguished road
Default Re: Would welcome advice

Hi HelenL

Thank you so much for having a think about my situation, and for your encouragement. I am amazed at the generosity of yourself and others on this forum.

I only got back from the neurologist when I read your message. I think you are right, I probably should have asked him about the EMG. I might give him a call. It would be great to know what this horrible beast is. On the other hand a comprehensive EMG might just rule out ALS completely for now. And wouldn't that be wonderful? If I've been understanding you experts correctly a clean EMG means no ALS. So, I think it would have value either way.

Thank you again Helen. I hope you are doing okay in the circumstances.

All the best

Lilly
wellington is offline  
Old 02-16-2012, 07:16 AM #12 (permalink)
Member
 
Join Date: 2011
City: Mel
State: VIC
Country: AU
Interest: I am interested in learning about ALS/MND.
Posts: 103
fitzroy is on a distinguished road
fitzroy fitzroy is offline
Member
Join Date: 2011
City: Mel
State: VIC
Country: AU
Interest: I am interested in learning about ALS/MND.
Posts: 103
fitzroy is on a distinguished road
Default Re: Would welcome advice

Wellington. You should get the details of the special scan you mentioned. PET and MRI, including things like functional MRI are certainly available. There are some world-class health research centres in our country and I've never heard of any limitations on diagnostic capability. There might only be a few locations for certain procedures and some constraints on medicare, but hey. Come to Melbourne and we can have a coffee and we can meet my friends at the MRI centre I just spent a couple of hours with.
fitzroy is offline  
Old 02-16-2012, 09:41 AM #13 (permalink)
HelenL's Avatar
Very Helpful Member
 
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
HelenL HelenL is offline
Very Helpful Member
HelenL's Avatar
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
Default Re: Would welcome advice

Hi Wellington, I think fitzroy has a great idea... in the meantime, for your muscular weakness have you considered supplements? Creatine is one of the ones that I think most of us take, I take 5000mg daily in 16 oz of water. I probably would take more, but I'm in the Dex trial and that's their limit. Just be sure to NOT buy the cheaper stuff to make sure it doesn't have additives that we don't need. CreapureŽ is supposed to be one of the best I've read.

Other supplements I take are B12, D3 Cholecalciferol, and recently started on Indian Winter Cherry, otherwise known as Ashwagandha... Oh, and the Ubiquinol Co-Q-10. Most of these are supposed to help with creating good cells... who knows if they help, but I know they're not hurting anything. They say that Americans have the world's most expensive pee!

IF you consider doing anything, check it out for yourself, and ask your doc first. I've read that high doses of D can stop alot of twitches, but too high a dose can make them worse for example... everything in moderation.

Good luck, and keep us posted...
HelenL is offline  
Old 03-05-2012, 10:31 PM #14 (permalink)
New Member
 
Join Date: 2012
City: Brisbane
State: Queensland
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
wellington is on a distinguished road
wellington wellington is offline
New Member
Join Date: 2012
City: Brisbane
State: Queensland
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
wellington is on a distinguished road
Default Re: Would welcome advice

Hello again

Still no diagnosis, but I have a question for all of those who have gone through a long diagnosis process. How do you cope? I am an optimist. I don't really believe for a minute that I have ALS - not only because it is so rare, but I just can't conceive that anything so terrible could be a possibility. So mostly I'm quite upbeat, and when I am feeling sorry for myself, or trip, or drop something, or can't open a bottle or the front door - I tell myself just to get over it.

What I'm having trouble with lately is - I go to the doctor or my neuro - tell them my problems, new symptoms, etc. (all the while wondering whether I'm imagining it or somehow making it up, because it all sounds so preposterous.) My doctors then only ever agree with me. I say I'm weak, they test me, and agree I'm weak. I say my muscles twitch, they say my muscles twitch. I say I'm worried I'll fall over, and they agree that I'll almost certainly fall over. I expect my doctor and neuro to reassure me that it's all in my head, and they say, 'No way. You have a serious degenerative neurological condition and it will get much much worse.'

At my two most recent visits, I was told to get a wheelie walker! This is not the advice I was expecting. I read of so many people on here who are worried sick, go to their doctor, and are told they are fine and perhaps its all in their head. For me its quite the opposite. I tell them I'm not too bad, and they tell me only bad news.

I am starting quite schizophrenic. I tell you all I'm optimistic, but meanwhile I have spent a great deal of time reading posts on this wonderful site. And I don't think this is the behaviour of someone who's okay, despite what I try and tell myself.

So - how do I get this all straight in my hea?. How do I continue to lead a carefree, positive life pre-diagnosis while my body deteriorates and my medical advisors tell me bad news? My neuro looks very sad when he talks to me. I don't dare ask him too many details though.

Thanks in advance for any advice. I think you are all utterly remarkable.

Lilly
wellington is offline  
Old 03-05-2012, 11:56 PM #15 (permalink)
Member
 
Join Date: 2010
City: Highland
State: CA
Country: US
Diagnosed: 04/2011
Interest: I have been diagnosed with ALS.
Posts: 440
kmendsley is on a distinguished road
kmendsley kmendsley is offline
Member
Join Date: 2010
City: Highland
State: CA
Country: US
Diagnosed: 04/2011
Interest: I have been diagnosed with ALS.
Posts: 440
kmendsley is on a distinguished road
Default Re: Would welcome advice

"So-how do I get this all straight in my head? How do I continue to lead a carefree, positive life pre-diagnosis while my body deteriorates ..."

Sad to say, but you don't continue living a care free life. You stopped that the minute you started to have symptoms. You have to start slowing down a bit now and convince yourself that it is okay. I just got a wheely walker and try to avoid it as much as possible ...I think it is a stubborn streak that says I can overcome anything! But, soon enough, there will be more days that you will realize you just can't do this...or that...or you are having to 'adapt' more to keep up with others.

One way I could tell for myself and is a constant reminder is when I walk with other people. The first couple steps are ok...but if they keep going at their same pace, and I keep going on...it isn't long at all until they are 5-10 strides ahead me looking back to wonder what happened to me. Foot drops have slowed me down considerably as well as the muscle atrophy in my legs keeps me wobbly and fatigued easily.

Your mind will catch up eventually. Just be careful for the time being. Good luck .
kmendsley is offline  
Closed Thread

Tags
advice, arm, arm weakness, book, christmas, emg, food, life, lift, movement, neurologist, shoulder, story, symptoms, thumb, twitches, weakness, work, wrong


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
still looking for a little advice. koala82 Do I Have ALS? Is This ALS? 6 10-28-2014 02:29 PM
I would appreciate some advice. FarWest Do I Have ALS? Is This ALS? 5 03-07-2013 10:48 PM
some advice please DH32 Do I Have ALS? Is This ALS? 4 04-18-2012 05:48 PM
More advice polly13 Do I Have ALS? Is This ALS? 5 02-10-2012 11:55 PM
Looking for Advice... Tico1975 Do I Have ALS? Is This ALS? 7 01-12-2012 05:00 PM
advice Sunrise Do I Have ALS? Is This ALS? 3 11-03-2010 05:38 AM
i am new to this and really need advice! nicdow114@yahoo.com General Discussion About ALS/MND 2 07-07-2010 04:07 AM
Need some advice andieg221981 Do I Have ALS? Is This ALS? 12 10-16-2008 01:46 AM
Need some advice ebeck Current Caregivers (CALS) 19 08-09-2008 09:30 PM
need advice lovelyhedgie Welcome New Members - Say Hello 1 07-27-2008 01:20 AM


All times are GMT -5. The time now is 05:34 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016