All the websites pointed me here...

[Cheeks]

Over and over again for months now, kept closing the window as soon as I saw what this was about. But decided today that I would say hello. So "Hi!"

First off would like to say that I feel awful for anyone that has been diagnosed'ed with ALS or is concerned about it for their own reasons. My heart and prayers have been with you for a long time and will continue. I have been doing the ALS walk now for 3 years, my good friend lost the battle with it in November of 2007.

I kept coming across this site as a google result when looking up all the strange and foreign words doctors have been throwing at me. I have not been diagnosed but realize it is a possibility some time in the future...but hopefully not. I saw first hand how horrible ALS is. I had myclonic movements w/ bulbar involvement, speech problems started in January of this year. They have progressed to extreme weakness and pain and now near incomprehensible speech. The ENT says it is called flaccid dsyarthria and am now going to a speech therapist (who is very nice but is unsure how much she will be able to help me...she is trying to get me to not compensate....not to force words out of my mouth and how to swallow with less risk of choking). It made me realize that it means I have at least lower motor neuron damage. Too many other things/symptoms to really list at this time.

I have no answers, only questions. I have now been shuffled to 3 neurologist and the last 2 were in full agreement that I need a movement specialist neurologist. I set that appointment 3 months ago and still have another 1 month to wait. I see it in their eyes that something is gravely wrong with me now and I get the feeling that they know and won't tell me.

I guess my question is when I go to the movement specialist in August...what should I ask? You guys seem to know an awful amount of stuff about a variety of neurological issues/tests..how to go about this.

Okay so only tests that have been done were done all within like the first 2 weeks of symptoms and now its been 7 months and I am way way worse. After careful questioning, I realized I had small symptoms earlier then JAN ie: people asking if I had been drinking ( i know now was my speech starting to slur) being ultra fatigued all the time (me getting my thyroid rechecked) , seeing an osteopath for adjustment for neck and shoulder stiffness and pain..again I thought maybe I slept wrong and ignored it for the most part till I couldnt work anymore at my job.

The ER that my PCP sent me to in January ruled out stroke. They thought I had from my speech and face not working quite right anymore. I had a cat scan and brain mri (not weighted). They summed it up as acute generalized weakness with no answers as to why. They referred me to a neurologist that didnt listen and ignored me..she couldnt recall problems I had been having. In her office in Jan she had someone on their first day on the job run an EMG. Not kidding, it was his first one ever and no one came into help him, it really bothered me and now I question the validity. I had been rest assured that I was clear of any worry I might have. But now with all the muscle cramping/stiffness and not being able to carry on a conversation (except through typing) I am wondering if I am really clear of it. It didnt make sense at the time, but I didnt know enough then to question it..but the emg tested my left leg..and my least affected leg at that. Why not my arm that was spazing out or my throat that had my voice a mess? I know the other follow up neurologist don't trust her initial evaluation...because they always ask " Was she very young?" and when I answer yes...they nod their heads. I now walk with a cane for my right leg and know I need a walker but I have just been refusing to go get one. I cannot turn a key in a lock now, button my shirt, or open one of my prescription pain killer bottles on my own.

I am 34 right now and even if I don't have ALS and I will be thrilled if I don't. I just wanted to reach out to someone anyone that might understand. What should I say to this mysterious doctor that all the other doctors have faith in?

Thanks for listening

-cheeks

 

[lydia]

Hi Cheeks,

You are certainly going through a lot and I hope you have answers soon. I was also referred to a movement disorder specialist as one of my original differentials was Parkinson's, and movement disorder neuros specialize in Parkinson's (among other things). I was also cleared (sort of) of the possibility of stroke. Have they mentioned the possibility of Parkinson's to you? Is that why they are sending you to a MDS? Issues with speech and swallowing also show up in PD, as do difficulty with fine motor skills, and of course mobility. I believe it is 25 to 30% of people with Parkinson's don't have the infamous tell-tale tremor, so even though you don't mention a tremor, not having one doesn't remove the possibility of Parkinson's. When I was concerned about PD I obsessively searched diagnosis stories and remember reading that many with PD reported difficulty with their shoulders/neck or elbows long before the more usual symptoms showed up (freezing, mask-face, tremor, stiffness). I have learned the diagnosed process for PD can take years and years.

When you said your face isn't working right, are you referring to your speech or something in your face? I have lost the "groove" that extends from my nose to my right corner of my mouth (can't recall term to describe it, something-fold) when I smile, and the movement above eyebrows on left side-no wrinkles anymore in forehead when I raise eyebrows. On bad days I worry that my face is beginning to mask.

Anyways, if I were you, I would check out the movement disorder websites. I haven't been to them in a while, so can't name them off the top of my head, but will look later and get back to you if you haven't found them or know them already. One of them has the phrase "We Move" in it; it was pretty helpful. Another deals with early onset Parkinson's ("young onset Parkinson's, google YOPD) and that was wonderful when I was worried sick. You will certainly hear the lingo/jargon for communicating with an MDS and that might give you some ideas of the questions to ask at your visit. I had to wait just over 3 months for my appointment as well, how awful! When I posted here about going to a movement disorder specialist I got the impression many didn't have experience with that type of neuro, but that was quite a while ago and may have changed.

Take care,

Lydia

 

[Blackpool]

I just wanted to say Hi,I am new diagnosed als and am not experienced enough to offer advice but one comment that was made to me at my appointment at the als clinic yesterday was, "There are far to few Doctors who will look for diagphram weakness to explain symptoms, they all look for Cancer,stroke etc. it might be one ave. to take. I know when I saw the pulmoray specialist I started with I have had 3 chest xrays a Cat scan , it is NOT my lungs, I can't lay on my back and breath properly, he listened and got the neuro to get me an urgent emg for the next day. I had been trying to get help for the breathing since feb.9 Dr thought it might be stress and over the last few months gave me four different kinds of anti deppressent I couldn't tolerate any,and I had to wait10weeks for MRI) I hope this info might help others if it dosn't relate to you. I hope they find something other than Als. I understand how you need to reach out, Thank you for this web site and the great people who support us.

 

[lydia]

Cheeks, I responded to your post very early this morning but it was sent for moderator review and still isn't here (the second one this week! I wish I could crack the code to determine how I am being flagged for review. It is an intriguing puzzle). So check back for it later, I have to run now-

Lydia

 

[BethU]

Cheeks, jeez I'm so sorry for what you are going through ... both the symptoms and the neuros. You are MUCH too young for this to be happening, and I pray that it is not ALS. You definitely need an expert to evaluate you, and not a learning-on-the-job trainee!

About questions: The first one I always think of is, no matter what the diagnosis (I had three other diagnosed before they decided on ALS), "What else can it be?" "Have you eliminated all other possibilities?" "What is the next step?" "What kind of treatments and support are available?" "How can I reach you if I have other questions?" (I always think of things later that I wish I had asked, and you will surely have questions that relate to your individual condition. It seems that every neuro case is unique.)

Don't worry about technical questions ... stick to basics. Also ... ask for copies of his/her report or test results. It will help if you have your own file of what tests have been done, what dates, etc. Write down your symptoms before you go in ... keep it to one page and easy for the doctor to read ... when you're in the office, it's so easy to forget things.

Good luck. Hang in there.

 

[Al]

Hi lydia. Sorry for the delay. I guess all us moderators slept in today. You said google. For some reason the word google is one of the key words that sends your post into moderation. Sorry for the inconvenience.

AL.

 

[BarryG]

Al, I think that now that the "g" word is more of a verb (synonymous with search) than a noun (?) or a product it should be de-listed as a trigger for moderator review.

 

[lydia]

Hi Al, it is no inconvenience I just wondered if I should repost it. So the g-word is the key, huh?