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BlueandGold

Senior member
Joined
Feb 28, 2015
Messages
634
Reason
PALS
Diagnosis
04/2015
Country
US
State
WV
City
Sandyville
Hi folks. May I start by saying how wonderful it is for all the support members of this forum give to those seeking answers. I am a 50 year old male with a wide range of symptoms dating back to April of 2014. My symptoms starting with body-wide twitching; not occasional but constant. I can say however that the twitching was and still is much more aggressive on my left (non dominant side). At the onset of my symptoms I also noticed cramping in my hands but mostly in my left hand. When I would grip something or bend my wrist forward my fingers seemed to draw in toward my palm. My first neurological exam was on May 29th, 2014 with a regular local neurologist. After doing an EMG and NCS on my right side (even though I told him my left side was more affected) I was diagnosed with Cramp Fasciculation Syndrome. The EMG showed fasciculations in all muscles tested but no positive sharp waves. The NCS was normal.

In September of 2014, my Primary Care Doc thought I should get a second opinion and sent me to the Neuromuscular Center at Cleveland Clinic. By this time my left hand had gotten worse and my "pinch" strength was declining along with visible atrophy in the left thenar. After my clinical the only weakness found was in my left thumb and pinky finger. I did have hyperreflexes but they were equal on both sides. I had a very thorough EMG and NCS and the specialist noted fasciculation potentials in 19 of the 22 muscles tested. He noted the following:

1. Reduced recruitment patterns and chronic neurogenic motor unit potentials in the C8-T1 myotomes with no active motor fiber loss.
2. Normal sensory and motor nerve conduction studies
3. Findings were suggestive of an intraspinal canal lesion affecting the C8/T1 myotomes.
4. Chronic motor fiber loss changes in the abductor pollicis brevis and adductor digiti minimi.
5. These findings are insufficient for a diagnosis of widespread disorder of motor fibers like that seen in motor neuron disease.

So an MRI of the cervical spine was ordered but only showed mild to moderate disc bulges and some osteophytes in multiple discs. However, Cleveland Clinic did not pursue any further and advised me to take magnesium and drink tonic water. For one clinical and the EMG/NCS they charged me over $10k.

Fast forward to today...I am now having speech difficulty which has gotten progressively worse since November of 2014. I find that I often have air escaping from my nose when I speak and cannot articulate very well. All of my family has now noticed it. I have no issues with swallowing with either solids or liquids. My main issue is constant phlem in my throat that just will not go away. The weakness in my left hand is still mostly confined to the "pinch" grip. I find it hard to cut the fingernails of my right hand with my left. It is harder to button my jeans with my left hand as well and the thenar is practically gone in my left hand.

I am not going back to Cleveland Clinic as I have a high deductible HSA plan and simply cannot afford their services. I found out that West Virginia University (in my home state of WV) has a neurological center that has been approved by the ALS/MD Society(?) so I am hoping that I can get care cheaper here in my home state. I have an appointment on March 30th.

I guess having given you all this background, one of my questions would be if I am diagnosed with MND, might I have a slower progression since it has been 10 months since onset of symptoms and I still have use of my left hand and it is only weaker? Also, no swallowing problems? I know every PALS is different with their symptoms and progression but I am trying to find something positive. I don't mean to sound like I have already been diagnosed, however having these progressing symptoms for almost a year with all other blood work and MRI's of the brain and cervical area negative, I'm preparing myself for what may come.

Thank you all for any insight.

Vince
 
There isn't much room for insight as you have pretty well documented yourself. Any accurate answers will come from the neurologist at your next appointment. As concerned as you are in possibly having such a serious disease as ALS/MND... I won't let who's cheaper prevail if at all possible. Maybe our more knowledgeable member may have any insight that might be left. Hope you hear good news.

PS. Your #5 ("5. These findings are insufficient for a diagnosis of widespread disorder of motor fibers like that seen in motor neuron disease.") and ("Cleveland Clinic did not pursue any further and advised me to take magnesium and drink tonic water.") should have somewhat eased your concerns.
 
Thanks for the reply. I do appreciate it. I know I gave a lot of information but I wanted to cover my bases. My concerns were absolutely erased until I started exhibiting the speech problems. I'm biting my tongue and cheeks daily and the cramping is getting worse. If I sneeze, I cramp in my abdomen; if I rest my head in my hands, my biceps cramp; if i raise my leg to tie my shoe, my calves cramp. My voice is steadily getting weaker as it cuts out on me sometimes in mid-sentence. The best way to describe it is that I seem to run out of air. It confuses me because I can take a deep breath and yell however if I'm just trying to get through a sentence it just "trails off".

I'd like to go to Dallas or Mayo in Jacksonville but racking up big medical bills is not an additional stress I want to put my family through. Just the last 10 months of medical bills have been astronomical.
 
Neither of your EMGs seems indicative of ALS to me.

"if I am diagnosed with MND, might I have a slower progression since it has been 10 months since onset of symptoms and I still have use of my left hand and it is only weaker?" No, it does not sound like MND in any shape or form.

I'd go back to my PCP and see if he has any other thoughts--CTS? And I don't see anything in your post that put you on the track of ALS or MND.
 
Thanks Dusty. I saw an ENT regarding speech and throat issues. He saw the fascics in my throat. I can feel them in my soft palate. I truly sound like someone who has a cleft palate when I talk. If I try to blow forcefully from my mouth, I can't control the air that leaks from my nose. My PCP, ENT and Endocronologist have all noted my speech problems. I've been tested for MG and had a paraneoplastic panel and auto antibody panel done. All negative. Local neuro referred me to WVU Neuro Center for Bulbar EMG. That's the only area not tested.

Thanks for taking the time to respond. I just need to be patient and wait for my next appointment.

Vince
 
"I just need to be patient and wait for my next appointment."

Yes, you have just heard from one of the most knowledgeable members of this Forum. There is nothing more you could post here until after March 30th and chances are more than excellent you'll be reporting that you do not have ALS or any MND. It's your money.
 
Well... my reply went to moderation. Some will understand that as of recent.
 
I understand the wait is tough on your nerves. But you really do need to do your best to be patient and take all your test results to your appointment on 3/30. They will have the information to either give you a diagnosis or hopefully tell you its an electrolyte imbalance or something else equally fixable. In the meantime, if your anxiety is still getting the best of you, see a doctor and get it treated. You will feel better. Best of luck.
 
You are very kind. I actually started antidepressants about 4 months ago. It does help with the anxiety. It's the general attitude among doctors (at least locally) of "waiting to see how things progress" that is frustrating. My wife and I pray daily for good results but having these darn symptoms smacking you in the face every day makes it hard.

My best to you and your husband.
 
Hi Vince,

I too have the speech issue you are talking about and that describes it pretty well. For me it has gotten better actually although it still comes and goes. It mostly happens when I'm tired, stressed, etc... The closest thing to it I can describe is Spasmodic Dysphonia.

I find that if I take time to breath properly and also to not let it "get to me" I can often times control it. Now's here's a weird one for you, if I try and talk like Clint Eastwood (think Dirty Harry) it goes away... Unfortunately when I do that people look at me like I'm out of my mind and the wife gets tired of me saying "so, do you feel lucky punk"... :-)

But on a serious note, try speaking with a different tone or in a different manner and see if that works. Whispering, speaking more in the "front" of your mouth (don't know how else to describe it), all seem to work for me.
 
The thing to remember is you are not alone in it taking you 10+ months to be diagnosed. Many people take 18-24 months because the doctors do want to see progression. ALS is a diagnosis of exclusion. Have they done a brain mri to rule out multiple sclerosis? There may be many more tests involved before you get an answer. If you are a veteran, it would be a good idea to use the VA system. It is efficient and well run at our facility and my husband had excellent care.
 
Dear Vince,
You don't sound like the typical "DIHALS " poster on here and I'm with you on the waiting. Yes, some test results indicate it may not be MND, but your symptoms concern me. I am very familiar with the Cleveland Clinic. I'd ask if your Neuro was an ALS specialist and if not could you please get a QUICK referral to one.
For what it's worth and I may well be way off base.
Just wishing you the best.
Sherry
 
The thing to remember is you are not alone in it taking you 10+ months to be diagnosed. Many people take 18-24 months because the doctors do want to see progression. ALS is a diagnosis of exclusion. Have they done a brain mri to rule out multiple sclerosis? There may be many more tests involved before you get an answer. If you are a veteran, it would be a good idea to use the VA system. It is efficient and well run at our facility and my husband had excellent care.

I did have a brain MRI which showed no abnormalities. I am not a VET but after reading all of the comments on the quality of care veteran PALS have received I wish I was.
 
Thank you Sherry. I saw 3 neuromuscular specialists at Cleveland (one was a neuromuscular fellow). The other two (one did clinical and one the EMG and NCS) had ALS as one of their diseases they treat. I don't know if that qualifies them to be ALS specialists. Dr. Moren did the clinical and Dr. Shields did they EMG/NCS.

Vince
 
I looked up those physicians and they were certainly highly qualified.
The bulbar EMG should give you direction and WVU looks like a good place for you to go. When is your appointment?
 
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