Question about ALS Clinic

[screwedagain]

Hello again - As some of you already know, I've been referred to the ALS clinic here in Syracuse (twitching, gagging, dirty EMG, etc., etc.). My appointment is October 3. To those of you that have gone through this (or even those that haven't, please comment too!!!) what can I expect from this first visit? I asked the coordinator if they are going to be doing any tests (I naturally want every possible test done immediately), and she said no. She also said that I would be there most of the morning, which is funny because my appointment is at 8:15. So what do you all think they are going to be doing to me for all of that time?

Thanks again - you have no idea how helpful you all have been so far.

Jeff

[jimercat]

Jeff,

I can only give you information regarding my husband's experience at the Emory ALS Clinic in Atlanta.

When we were given the choice of going to Emory or staying with the neurologist that dxd my husband, we were told that all the specialists he would need to see would be at one location. Although he really wished he could continue with seeing his neurologist, he decided to go to Emory to save time, money and energy.

The Emory doctor was the fourth one seen by my husband regarding his illness. His GP dxd him with neurological "problem." Two neuros dxd him with ALS. And now the Emory doc. He examined my husband's reflexes and visually observed him after having extensively reviewed my husbands previous tests and records. He then gave us his dx of ALS, agreeing with the other docs. After that all the specialists came in one at a time: neuromuscular research nurse for blood and trials participation info, speech language pathologist for swallowing and speech issues, occupational therapist for help with ADL, neuromuscular nurse clinician, social worker, rep from the MDA, and rep from the local ALS Assoc. The only thing missing were the hot dog and beer vendors!!! LOL Seriously, you will be there for a long while, so take some bottled water or something and a snack. Also bring reading material.

Jeff will you have anyone to take with you? If at all possible, take a close friend, you may need one.

I pray you are not dxd with this crap. Please let us know about you visit with the clinic.

Good Luck! Hopefully you will be able to change your screen name after the visit "lucksachangin!"

[ZenArcher]

Jeff,
Good name by the way. I can tell you what happened with me. I had already gotten a diagnosis of MND by my neurologist and was sent to the ALS clinic in Hershey for a second opinion. When I got there my doctor wanted to redo all my tests. They took blood and then asked if I wanted to stay to get another EMG done which of course I did. We got all those results back the same day and the next step was to schedule a spinal tap. That was done a week later. The results of the tap and the dx were a week after that.

I have since been to two clinics which consist of a visit by the neuro and any other needed specialists. There are 14 specialists available to see you at the Hershey clinic depending on need. My breathing is fine so I don't see the pulmonary specialist..etc.

[screwedagain]

Thanks for the quick replies. My neuro already diagnosed me with MND...so, based on what I've read into your replies, in their eyes is it already a foregone conclusion that I have ALS and they are going to be jamming all of these other people down my throat? That is, will I just wind up going there and getting introduced to a bunch of people that I'll wind up needing down the road? The problem is that my !#$@!! neuro insists on soft-peddling this crap to me, and has been really evasive up to this point, so I don't know what to expect.

Jeff

[Peg B]

Hi Jeff,

My neuro was sure I had ALS last October. He sent me to ALS clinic where (U of Mich) I had blood work and EMG and NVC no spinal taps. They started me on IVIG to see if I have MMN instead. Which I am still on. No forgone conclusions - no for sure DX till the clinic says so. What clinic are you going to? Also did you stay in school to finish your Masters? Hope So, Peg

[ZenArcher]

My first visit was actually during a clinic but the only person I saw was my neuro. It wasn't until after I got the dx from the clinic neuro and went to the next clinic where I met the majority of the specialists.

[ltr]

Jeff - My experience at Upstate sucked, as you know. I too was there most of the morning and was NOT diagnosed with anything....so please take a deep breath and don't think the worst. What happened there was that the fellow did a neuro exam and asked a lot of questions and acted really uninterested. Then she went and talked to the neuro who repeated her exam and then said they needed to schedule an EMG, sleep study, etc. at a later date. I don't know if your visit will be the same since you are going into the als clinic portion, but based on what you have told us do not take a diagnosis of als from them without going down the rest of the road, i.e. MMN treatments, lyme, etc. This has all been way too fast for you and I just don't see how they can settle on a dx with one dirty EMG. Please hold some hope and fight for more tests and treatment. Please keep in touch. Leslie

[Candi]

y husband also goes to Hershey clinic. He was referred to Hershey for a Dx after it was pretty much decided that the Dx was to be ALS. He had already been Dx with dementia. The Dr spent about 2 hours asking questions and performing the exam. We then left for lunch and returned 2 hours later for an EMG. He already had undergone and EMG with a lodcal Dr but the specialist wanted to confirm the EMG results. There was also another blood test performed to rule out one more disease.
After the EMG, which was performed by the ALS specialist, the doctor spent another 1.5 hours with us explaining the Dx and loading our arms with booklets of information.
My husband's first clinic visity was just 3 weeks later. At the first visit he was still lifting weights, walking about 6 miles a few times a week and doing 90 push-ups and 200 sit-ups each day. That was three visits ago.
Just Friday he had a feeding tube placed. He can no longer do even one sit-up, his walking is very limited and his speech is gone except for a few words that occasionally can be understood by those close to him. His breathing has gone from over 100% in March to 60% in September.
The clinic specialist have been great and have helped me tremendously. My husbands dementia is abnormally severe for someone his age which makes decisions and understanding his needs even more difficult. I really do not know how I could be dealing with this without their help.
As for the feedign tube, in one day, my husband has more energy and although I don't think he fully understood how the tube would work, he is cooperating very well and does not even want to atempt to eat anything orally.

[pldo]

At my first visit they just tested reflexes and looked at my legs, hands, etc. No tests, said pinched nerve come back soon. I went to a second neuro who did the same thng and then on the second visit gave me an EMG. Clean for now . . .

[screwedagain]

Leslie - I'm trying to keep some hope, but it certainly isn't easy. It's hard to get through the day sometimes, especially when I see my nieces...I really want to see them grow up, and it kills me that I might not be able to. I'm going to the ALS Clinic at Upstate, like you said - hopefully they aren't single-minded/tunnel-visioned about ALS and will be willing to consider the alternatives.

Peg, I'm still undecided about finishing my masters degree...I'm still going to classes and trying to do the work, but I've been investigating what's involved in taking a leave. My only concern is that this time might be better spent taking that trip around the world I always wanted to take. That and I'm so out of it mentally, I can't really focus on anything having to do with school anyway. I don't know. The degree has always been a means to an end in my mind (it hasn't been something I've enjoyed doing just for the sake of it...it's been fun, but not that much fun) and now that end is in question. I figured I would at least wait until my appt to see what transpires.

Thanks again to everyone for your replies.

Jeff

[Peg B]

Hi Jeff,

Thanks for answering about school. You make good sense about it. I thought I always loved graduate school (hated the rest) but I had no trouble dropping out of the PhD program as I could not write the problems out in statistics and it was super time comsuming. I also had to drop work and after 36 of working and no hope anymore of teaching full time college when I retired - dropped out without regret.

But its a wonderful idea to wait until your appointment. I really appreciate your feelings about this as I have been concerned about this and it took me a while to find your post. You are in my prayers. Keep us posted. Peg

[screwedagain]

annmarie - all I've found out from the neuro about my EMG is that it showed "evidence of denervation" and that it meant that I have MND. He also took some blood for autoimmune stuff, but that all came back normal...symptoms are about the same. I have a twitch in my legs every few seconds (some of them are painful, the really strong ones), and I've been getting them in my arms and neck, too, but not as frequently as in my legs. The weakness in my right hand doesn't seem to be as bad, though. It's there, but at least now I can dial the phone, use the remote, etc. The lump in my throat is almost constant now, and I'll start gagging every now and then. My voice also gets hoarse/gravelly when I talk a lot.

Peg - my department is being really wonderful about all of this. They are helping me figure out what resources are available through the University, and have even offered to help in other substantial ways. Basically they are just waiting for my decision. It may come soon, because I have a paper due in a week hahaha....

[Peg B]

Hi Jeff,

I laughed at "paper due in a week." Then felt the dread then saw your "Ha Ha." My very best wishes to you. Peg

[ltr]

Jeff, are you still having the weakness in your legs and trouble with stairs? The reason I ask is that that was one of your initial complaints and now that is where you are having the majority of your twitching.

One thing that concerns me is that you were fine until June. Also, EMG's can be abnormal with the same findings in a myopathy and that can be caused from trauma, a virus, toxins, many different things. I know I kind of lean that way because I have one, but the quickness of your disease process just really leads me in that direction.

Please, please, please demand a muscle biopsy. It's no skin of the docs back, it won't hurt you (other than very minor soreness) and it may lead to treatment of something. You are just too young. Also, the myopathies can wax and wane like you saying that your right hand weakness is a little better. In ALS once the muscle is gone it's gone. Do a little research and see what you think. On this link scroll down to the inflammatories, it even mentions the swelling you write about. Good luck.

[screwedagain]

ltr - I certainly hope you are right. I am still having the trouble with the stairs, etc., and my knees are a bit wobbly. Thanks for the tip about the biopsy. I plan on demanding that, along with every other test under the sun.

Peg, maybe you could help me with the paper...do you know anything about puritan political thought? It's due the 4th, so just go ahead and write it up for me and send it along...hahaha....

[pldo]

I have some knowlege of that. . . Just dont mention sex . . .

[ltr]

Jeff, sorry I forgot to include the link I mentioned in my post. Scroll down to the inflammatory portion and see what you think. I'm just hoping for a better outcome for you. Leslie


http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/myopathies.jsp

[screwedagain]

Leslie, thanks for the info.

Right hand and arm is on the fritz again today. I tried pumping gas with it yesterday, and it hasn't worked right since. I've also tripped over my right foot a couple of times today. 6 days until I see the ALS specialist, or what someone on here accurately described as feeling like going to see the grim reaper.

No progress on the Puritans, either.

[Peg B]

Hi Jeff,

You asked me a question but I lost the thread. I copied and pasted the answer here as the other one seems gone. Anyway I hope the information is helpful. Really best wishes on seeing the neuro. Please let us know.

MMN and AlS in many ways, are the same. My blood work shows no "autoamune" and I have one borderline conduction block. (clear DX of MMN calls for two conduction blocks.) MMN has treatment for the symtoms (IVIG) but no cure and the underlying disease progresses on. As far as ALS I have no upper motor neuron symptoms at this time. One internet site said that sometimes "the upper neuron ...(issues) don't show up until autopsy." (that gave me pause) I had abnormal EMG in three limbs. I am currently DX with either "Atypical ALS" or MMN. I am grateful it looks more like MMN as I am not any worse and I now can move my baby finger - atrophy right hand. Whatever I have is very slow so the best I can do is do the best I can do. My only fear is to live 10, 20 or less years worrying instead of living. That would embarass me a lot.

Also we told our kids 25 and 28 right away (24 hours). We believe in "the best news is no news" so our kids and sibs can trust that everything in OK unless we tell them different. That way none of us have to worry.

And about that paper... I always thought Salem Mass. to be an excellent theme . Best luck on getting that done!

My prayers are with you, Peg