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Sunshine94

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Feb 28, 2018
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Learn about ALS
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Anderson
First of all I am 41 with 2 amazing kids and been married to the love of my life for almost 25 years! My life is wonderful even though the past year has been tough.

My symptoms started with shortness of breath or at least that is what slowed me down to notice. I was hospitalized 2 times for what they thought was pneumonia but then realized over lots of test...MRI, CT, labs and spirometry that this is a neuromuscular issue.

I was started on 3 liters of oxygen continuous flow in March. My pulmonary doctor sent me to Duke for a 2nd opinion and the pulmonary doctor there confirmed that this is a neuromuscular disease we are dealing with and that my actual lungs are fine but the muscles around my diaphragm are very weak.

I was sent to a neurologist that was quite the jokester but I needed someone who was seriously going to be aggressive and figure out some treatment. He said he could not do a EMP of my diaphragm and said that my left leg weakness was coming from the lack of oxygen. This was 8 months ago. Move forward to today:

My breathing on 3 liters seems to maintain but I do have random events when I feel air hungry and I seem to start to pant again. It can be walking to the car or laying in the bed. I am not sure what triggers it maybe activity but I do notice it happening when I am sitting still sometimes as well. (MAXIMUM INSPIRATORY PRESSURE: 70% of predicted / MAXIMUM EXPIRATORY PRESSURE: 17% of predicted)

My left leg continues to be weak. My foot drags a little and I pick it up a little higher to not let it drag. Both feet tingle and feel like pins in them especially at night when I lay down. My calf muscle in my left leg cramps.

My left shoulder has recently become weak.. not my hand just to raise my arm or even when I am typing that shoulder feels weak. My shoulder muscle seems to cramp some as well.

My tongue feels like its a little swollen almost like its too big for my mouth but I don't choke. My mouth gets tired chewing or talking for long periods of time. I seem to enjoy softer easier to chew food better than steak or chicken.

I have a few things that are just aggravating...my fingers twitch, my words don't always come out right, I am so emotional either break down and cry or just snap which I cant stand and feel so bad about after the fact.

I have a headache about 4 days a week... possibly from lack of oxygen. I don't hurt (excepts for the headaches or muscle cramps) but I am exhausted. Everything feels so tired but not like I need a nap tired its more like hold your pee because you don't feel like walking to the bathroom and taking your pants down tired. Its the how dirty is my hair because I am not sure I have the strength to raise my arms to wash it.... but then when you do... you are short of breath and laying across the bed just to get the strength to put clothes on.

My walk has this lovely drag to it and my husband and kids hold onto me so I don't fall. Plus I have my oxygen tank that i use as a walker for my right side. I no longer drive because to get out and walk wears me out that I cant drive home.

My husband sees changes in me over the past year and is scared.. I try to hide the changes so he does':Dnt worry but they are too big now. I was excited when I thought I would be able to get a portable concentrator however that lasted for about 2 weeks of trying but the alarm continue to go off because my muscles where not strong enough to trigger the pulse. So back to the tanks... which is fine its my walker too so I guess it was meant to be.

I guess after all that blah blah blah.... I just would like to know it there anything I can be doing to make any of this easier and also I have not thought anything about ALS because I felt like it normally doesn't start with the muscles around your diaphragm. Both of my pulmonary doctors have mentioned ALS and I am currently waiting on my appointment to either MUSC or Duke (whoever can see me the soonest).

I just want to do anything I can to be proactive and positive and this waiting game of not knowing what comes next will drive you crazy!

Any advice is treasured and appreciated.

Thank you!!
Smiling Anyway!!:D
 
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Hello Sunshine,

You have some systemic process going on. There are numerous possibilities, not necessarily ALS, but a good neuromuscular specialist should help you sort through all this.

If the respiratory symptoms are neuromuscular, I’m surprised they put you on oxygen, as oxygen suppresses respiratory drive. With ALS, they usually recommend BiPAP to decrease work of breathing and blow off carbon dioxide.

The pins and needles sensation also goes against ALS.

So hopefully the neuromuscular specialist can provide the clarity you seek. Best of luck.
 
If you've already been to Duke and they saw that your MEP was only 17%, why did they not send you to Dr. Bedlack? He is the neuromuscular specialist at Duke and is extremely good.

I'm a little confused by your post. Are you using BiPap? You mentioned oxygen and generally, oxygen is not indicated for ALS, especially when your MEP is that low and there are no other things wrong with your lungs. The reason for headaches could be that CO2 is building up and you can't exhale it. Please call your doctor and talk to him/her about this issue immediately. If you were prescribed a BiPap, you might just need to adjust the settings.
 
I am not using a BiPap only a in home oxygen concentrator and portable tanks. When my blood gas came back at 63% last March they started me on oxygen that night. Since then nothing has improved and I still feel like I am struggling to not pant. Its like I cannot get a deep breath, its just enough to keep me functioning but giving me headaches in the process. I am not aware of Dr. Bedlack. I seen Dr. Snapper there and he said for me to see the neurologist group there it would be a 6 month wait. He was wonderful and very informative but not I am waiting for the next step.
 
Just curious why your oxygen saturation would be only 63%. I can see why they gave you oxygen. Did you have a DLCO as part of the pulmonary function tests, and did you have a high-resolution CT scan of the lungs? These would be to rule out lung parenchymal (lung tissue) disease, which would not suggest ALS but can be seen with some systemic autoimmune conditions.
 
I'll use this opportunity to relay an administrative note for everyone.

We aim to have an informative and pleasant website for people affected by ALS.
This includes Christians, Muslims, atheists, Hindus and everybody in between.
To that end, we have a "Religion" forum where people suffering from ALS who are religious can enjoy sharing matters of faith.
Other than that, we discourage highlighting religion on the other forums. You might be a strong believer in your way, but others have their own way. To respect everyone, we keep most references to religion out of the forums except the "Religion" forum.
 
I did have a complete pulmonary function test at Duke and a lung CT with contrast and everything directed towards neuromuscular. My lungs looked fine except for the bottom of my lungs where not opening but felt that was due to the muscle function.
 
I was able to get to Johns Hopkins in about 3 weeks and Mayo (Florida) in 2 weeks. I really think you need to get checked out by a neuromuscular specialist ASAP.

I would also ask to be put on Dr. Bedlack's cancellation list.
 
I agree with Kim that you need to be a very squeaky wheel here and get seen soon. Are you making these appointments yourself? Did these doctors who said maybe ALS do the contacting? If they said they would call for you have you followed up calling the clinics yourself?

You shouldn’t have to be chasing appointments but sometimes people drop the ball. Can your pcp help? It seems as if once someone at the clinic with clinical expertise looked at your pulmonary numbers and heard ALS was in question they would expedite an appointment. Duke and Dr B are great certainly so if you get in there that would be great. If you go somewhere else first you still want a second opinion so don’t give up after you get your first appointment scheduled

Good luck
 
Odd symptoms, not all ALS.

If your headaches are from CO2 retention, this can easily and quickly verified with either a serum CO2 or an arterial blood gas.

If you are retaining, you need to be on non invasive ventilation AT LEAST overnight and probably 24/7.
 
This just doesn't add up if your results are this bad and they say neuromuscular then oh well 6 month wait.

I'd be clarifying everything, I think there is some real confusion here.
 
I spoke to Stacey yesterday at Dr Bedlacks office and she was wonderful. He can see me in June and his partner Dr Choi can see me in April!! My pulmonary doctor is sending over the referral today. Thank you so much for the recommendation. I am going to go ahead and schedule with Dr Choi in order to be seen sooner because they feel instead of oxygen I should be on a trilogy...?? I am doing some research on that because I know nothing about it... I just know oxygen was an immediate fix at the time but as time has went on and other symptoms have persisted I am not confident in my treatment.
 
Trilogy sounds appropriate from what you have told us. I am happy you are getting in sooner. Ask if you can be on a cancel list too good luck
 
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So glad you have sorted an earlier appointment with this doctor.

I hope they find something they can treat as these doctors deal with more than ALS.

Do ask about the cancellation list as lots of people do cancel for lots of reasons.
 
That's wonderful news. Most of us PALS use or will be using a Trilogy.
 
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