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pjm220

Active member
Joined
Apr 10, 2010
Messages
47
Reason
PALS
Diagnosis
08/2010
Country
US
State
IL
City
Chicago
Hello. I have not received a diagnosed yet, but all symptoms are pointing to bulbar ALS. I am midway through the 3 month waiting period before I see the neurologist again. My symptoms probably started 10 months ago with difficulty in breathing. Primary doc treated me for asthma; all allergy tests came back negative. 6 months ago my speech started to slur, and 4 months ago I developed a peg leg on the left side. It has now progressed to both legs, and I have the perfect “Frankenstein walk.” I choke easily, one side of my face droops a bit, my tongue quivers and pulsates on the sides, I have fasciculations in my upper thighs, chin and lips, I yawn excessively, gag to the point of throwing up when I brush my teeth, and still have a hard time breathing, even when I lay down. I was laughing and crying inappropriately, but I am now on antidepressants, so I think that has helped some. However, once I start to laugh or cry I can’t stop easily, and it sounds really odd… like gulping and gafaws. The cramps are in both legs, but not my arms. And I sneeze all the time… what’s with that?

CT, blood work and MRI have ruled out all that those diagnostics tools can rule out. So, without a diagnosis, my husband and I are treating the symptoms as best we can. I was on Lipitor for a couple years, but went off it to see if it was causing some of the symptoms in the beginning. Primary doc wants to put me back on, but I am hesitant. The posts that I have read here are supporting my hesitancy, in that it may compound some of the symptoms. I am still on the inhaler for asthma, but think I should go off, because I don’t think it is asthma. Anyone have any thoughts?

I am thinking massage therapy for the aches after the cramps and chiropractic to put my spine and hips back in place after the Frankenstein walk. Is it worth it to continue to try to use my NordicTrack ? (I do it slowly and alternate between moving my feet and arms, not both at the same time anymore.) My speech is pretty bad now, but until the diagnosis comes I can’t get into any programs to work on it. My husband is a trained singer and he has worked with me on breathing exercises, and that helps when I cry uncontrollably.

Since the symptoms are so similar to ALS symptoms, I am wondering what else we can to do manage them. Any ideas?

Thanks, and God bless all who are struggling with ALS and all of the caregivers.
 
btw, I am 57 years old.
 
Hi, sorry you have had to come looking for us.... I am wondering if you have seen a Dr. that specializes in ALS and a clinic ? You sound like you have some symptoms of ALS but only a Nero can say for sure.. Best of luck with your next Nero visit... let us know what he thinks.. I went to a Nero my first visit that ALS wasn't his specialty.. I found a ALS clinic and I think that is the perfect setup... I'll be waiting to hear back from you, Linda
 
so sorry .... the only thig i can say is if the inhaler helps keep it asthma or not , ... if it don't help then don't use it but , keep it on hand just incase .... wishing you the best of luck
 
Thanks so much, Linda and tdamess. No, the inhaler isn't working. So I will take that great advise.

My neurologist is a specialist in MND's in general. I will post the final results. Every week there are new things that are inteferring with my ability to function, it seems. At this point, the symptoms are so loud that we just want to feel like we have more control.

Last night I woke up to the sounds of my husband crying. It broke my heart.
 
we are all here to support each other ... there will be other's along with some good thought's for you ... and yes keep us informed
 
Risky to speculate on medical advice, except to say, that it is amazing how many physicians dismiss (what seems so clearly now to be ALS
symptoms). As for me, I decided that I was going to walk as much as I could after my neurologist said it would be a futile effort, but with the aid of an orthodic device, it made walking easier, and I fell less often, so my advice is do what you can maintain a customary lifetstyle for yourself. I do't know if it slows the wasting of muscle or not, but if you give up on thing, how much easier is it going to be to give up on the next hurdle that crosses your path?
 
Hi pjm220,

I'm sorry you feel you need to be here. I must say many of the symptoms you describe do sound like ALS but a diagnosis is tricky and none here are qualified to make one. Nonetheless, there a couple of surprises in your post. The drooping jaw is not a symptom I have heard before in the several years I've been dealing with this disease. Secondly, I am surprised your neurologist has not performed an emg on you. It is a very important diagnostic test for ALS. You have come to a good place for sharing and obtaining advice.

Hoping for the best for you.

John
 
Hi PJM,
Sorrry you had to come to this forum... You'll find a lot of support and encouragement here.
I agree with John1 , why haven't you had an EMG done. Another thing is pulmonary function test... What is your FVC? You might benefit from BIPAP or CPAP, talk to you pulmonologist.
Good luck, erica
 
Hi pjm220, Welcome to our family forum, but so sorry you had to come looking for us hun. My dad has ALS, and yes he had the jaw droop. It does sound like ALS that you are describing, and I am surprised that you have not have had the EMG test done. When is your next appt. 6 weeks? I would call your Neuro, and tell him you want the EMG test done. When my dad had that test, they knew the same day what it was. (not to say that happens with everyone) It is tough to give advice without a confirmable diagnosis hun. Some people do a lot of things to try and keep the symptoms at bay, others do almost nothing. My dad has a ton of things he does, and so far his progression has slowed down and in some areas he has gotten better, and in a few areas a bit worse. You have to remember that there is no cure, and that no two people react the same way to different treatments. The disease itself does have a mind of its own it seems. I would keep up the exercise just so long as it does not wipe you out. If you get to fatigued after exercise, you are over doing. What you are going through both emotionally and physically is exhausting hun. I would be an emotional wreck too. The sooner you get some sort of diagnosis, the better so at least you know for sure what you are dealing with. Hang in there, and please keep us posted. I hope it is not ALS, but pray you get some answers soon! If it is ALS, there is a ton of advice I and we can give you. Just hang on, we are here for you!
Hugs, Kari
 
Thank you all for your feedback. I now have information that will help me be more aggressive in the testing. No one has suggested any pulmonary functioning tests, so I will. I suspect the order for the EMG will come after our next visit, as the symptoms seem to be progressing rather quickly. I will demand it.

It is difficult to be knowledgeable about what we should be demanding without prior experience in the area of neurological/motor malfunctions. I am very thankful for your tips.

God bless you all.
 
I too am so sorry to hear that you are experiencing such difficulty, I agree that you should be demanding a EMG as soon as possible, along with the PFT (pulmonary function test). The Bipap has helped my father-in-law tremendously with energy level and general fatigue. Did I understand you to say your neuro doc specializes in MND that is great, but a clinic usually has supportive staff also that would help you with all of the tips and support you are looking for. My father-in-law goes to the Duke ALS Clinic where we see a nutritionist, speech therapist, respiratory therapist, physical therapist, occupational therapist, and social worker in addition to the doctor with each visit I suggest you get online and find the nearest clinic to you and discuss it with your neuro doc to get referal ASAP. This is a very demanding disease and requires a lot of support I wish you the best, and our prayers are with you and your family.
 
You folks are all just so supportive, helpful and..... loving. I thank you all, from the bottom of my heart.

I have a message in to my doc for pulmonary testing. I have not recieved a response yet, but I will, one way or another.

Thank you, and God bless us all.
 
Hi pjm220, Oh glad to hear you have the call in to the doctor. Please keep us posted. If you ever need to talk, you can always message me, and I am here for ya! Please keep us posted hun!
Hugs, Kari
 
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