figure this out

[alex scared]

hi new here so wont bore you with life story just list my symptoms and see what you thin . . . .sometime in may i noticed problems breathin at night . . Fragmented sleep sweating . . Cant breathe lying flat . .. . Then i noticed i was becoming breathless with any sort exertion even talkin.went to doc who checked my lungs said they were clear and its weakness . Breathin is a neuro matter so i went to a neuro. . He was baffled cos physically there was on other SymptoMs . . .since then breathin has just got worse . . I feel like i breathin through a straw thats getting smaller each day . . Its making my chest and back uncomforta . now developin some stiffness around hip and thumb on both sides . . I have been told this sounds like unusual onset mnd . . is respiratory presentation common at my age . . Help please

 

[alex scared]

just realised i asked if respiratory presentation is unusual at my age and didn state my age . . I am a total dumba¤s . . I am thirty four . .

 

[Al]

It is unusual to have breathing issues first at any age. Any chance it's COPD or asthma?

AL.

 

[alex scared]

hi grandpal . . Thank you for answering i am lucky to have your experience looking at this. . Asthma was ruled out early at doc. The only thing that fits is breathin muscle weakness doc words. . Its at the point where lying down cuts my breathin out entirely. . Apparently i totally stop breathin at times at night. . Walking ,stairs,talkin are all affected and my voice is getting weaker. . I flew through a neuro strength test but have developed stiff and heavy feeling hip on both sides and other places are starting to feel weak ankles thumb again both sides . . Just for the record i twitch like mad but been like it for 8 years so cant see that relevant. .the breathin is the thing the most prominent . . If it continues to decline i will need assistance breathin in a month. . I have looked into codp but doc again said no. . Its bizarre because other than bit of stiffness described earlier i beginning to look at respiratory presentation mnd . . als . . I only getting worse the guy that wrote the post the breath of life worded exactly how i feel . . Its like breathin in a bag. . Thank you for reading . . . Your thoughts on my sympto would be so helpful. . . .

 

[Al]

Is it easier to breathe lying on your side?

AL.

 

[Moonmark]

Alexscared- did the neuro conduct an EMG on you? if so, what did it show. if you can't breathe, someone definitely needs to figure it out.

Sandra

 

[alex scared]

lying with my feet up in any sort of way tighten my breathin up. . On my side is no better . . I sleep in a lazy boy now sat upright . . But have been told my breathin is appalling asleep . . Shallow and i gasp . . Mainly though i always wake up every 5 mins heart thumping sweating and outta breath . I just dont know whats going on . . I could just bout deal with it but now its during the day too . . Couple it up with stiffness and you can see how i ended up thinking mnd als . . Its only getting worse too there not been any good days . . Thank you again grandpal . . You and joel and countless others have given a new meaning to the word compassion

 

[alex scared]

sandra hi thank you for answering . . The neuro was baffled by my apparent lack of more physical symptoms and was of the opinion that at 34 years old als was unlike and respirator presentation even more so! . So no emg was carried out . . Due to my ignorance i at the time didn know what one was . . He was of the opin that if i had mnd i would show more physical sympto and refereed me to a respiratory presentatio doc which is 6 weeks away . . I dont understand this part . . He agreed that i have breathin muscle weakness but still told me to see respiratory doc . . I thought breathin muscle weakness would come under his domain. .

 

[Moonmark]

Well, I think that there are many other diseases which can cause diaphragm weakness, so maybe that is why the neurologist is looking elsewhere. but it seems if you cannot breathe, then 6 weeks is a long time to wait. can you go through an emergency room with your symptoms and be seen by a specialist that way? I don't know how it works in the UK, but here in the United States, you can go to an emergency room and if something really serious is happening, such as problems breathing, they often admit you right then and there and then a specialist comes to see you. might that work?

also, maybe you could call the neuro and ask him to conduct an EMG prior to the visit with the respiratory specialist.

good luck-

Sandra

 

[alex scared]

sandra been to a and e twice . . E r i think you guys call it . . they took my oxygen sat level . . 91 both times then basically agreed that i had breathin prob but wait till my appointment . . The neuro is impossib to get hold of but my doc has refereed me back and waiting to hear. . Thank you for your input

 

[rose]

Alex,

I had some problems early on with breathing (back then they were nothing to the extent of what you are describing) and the doctors first investigated an inherited form of Emphysema, as my father had this, and in fact died from complications of it (in old age) . A simple blood test will reveal if the person has the gene. It is rare.

Also consider talking to a rheumatologist, as some inflammatory/ autoimmune problems can affect respiratory.

There is a condition called Stiff Man syndrome, and it affects the axial muscles, which is where your diaphragm and intercostal muscles used for breathing are. I think that sometimes certain antibodies are present with this condition, and would think that this, (even though it is not known to be autoimmune for certain) scleraderma and lupus are autoimmune illnesses which a rhematologist might want to look into. Even though none of these are very common, they are much more prevalent than someone your age having ALS/MND, especially the very rare axial onset.

Have you had any sort of pulmonary testing? Not only the monitor they put on your finger to test blood gases, but more involved tests? If so, what was the outcome of them?

Did the pulmonary evaluation remark if you are using auxillary muscles to breathe, either all of the time, or when laying down?

I agree with your neuro who referred you to a pulmonary doctor. Whether or not it is a rare form of MND causing your muscle weakness, you're still going to need to have your breathing issues addressed by a specialist in that field.

In my opinion, breathing difficulties fall under the category of needing immediate attention, and the wait you describe (six weeks) is pretty far off.

good luck to you, be assertive!

 

[APL55]

Hi Alex, I suffer from pulmonary hypertension,which has some of the same signs you show,this will not show up on a EKG or Xrays or with a PFT,you have to have an Echocardiogram done,you will need to see a pulmonolgist.This effects the arteries in the lungs that go to the heart,they will also do a rightside heart cath to check the pressures in you heart.I would recomend that you do this ASAP,I'm not saying this is what you have since I'm no doctor,but its nothing to fool with.Good Luck.

 

[alex scared]

rose hi and thank you for taking the time to respond. . To answer your questions . They took a lot of blood tests including cpk but not sure if they checkd emphysemia. . They didn check my blood Gas level. But all docs includin the neuro have watched my breathin action and said i have breathin muscle weakness. . I know very little about the condition you mention but will have a look into them . . Also all this has coincide with bad acid after eatim. . You brave people on here must get enough people panickin over an eyelid flicker but i have put breathin muscle weakness and hip wrist and other areas stiffm up and a fair bit me twitchin (who doesn't ) and come up with a increasing concern of Mnd als . . Just for the record i am non smoker . . . . Apl55 hi i am very grateful you have taken time to read and respond . . I will ask my doc about pulmoma hypertension . . But although my main concern is Breathin (thats what keeps us alive after all) why am i getting heavy hip wrist etc. . I guess i can only wait till my appointment i think they gonna check lung capacity . . . Either way thank you again all that responded . . I will keep you all informed.

 

[Danijela]

"He agreed that i have breathin muscle weakness but still told me to see respiratory doc . . I thought breathin muscle weakness would come under his domain."

Hi Alex, we are in the UK. To answer the above point, no, it would not come under the neuro domain. MND clinic that my partner attends refers MND patients to a specialist hospital once their breathing is compromised. I really hope you do not turn out to have MND, but will put the link up to the latest NICE guidlines published this year, addressing use of non-invasive ventilation in MND. Clinics are under pressure to implement them, so you may wish to make your neuro know that you are familiar with the guidlines, hoping your appt is moved forward and you are seen sooner.

good luck, Dani

 

[Lavender Lady]

If you cannot breathe and or are having difficulty getting a breath call your emergency response system for help. Six weeks is a long time to wait.