Just me ...

[cbella]

Hi! I'm new and here is my story. I feel like I have had MS all of my life. My mother has it as well so I grew up watching her symptoms and what it can do. I was finally diagnosed at 28 and am now 53. I have Relapsing/Remitting MS and was fortunate to have it go into remission for a long time. But when it came out, it came out like a lion! I could barely move! My neurologist fought for years to get me back (almost) to where I am now. I can get around, take care of myself, and live a simple but productive life. I give a lot of credit to Tecfidera which I often refer to as a "miracle drug." It has given me the ability to function without having to lie down after every movement or action. My biggest problem is breathing; I do have shortness of breath that comes on and can make me stop what I am doing. My lungs feel so heavy! But I do; I pace myself; move on; and count my blessings. I have seen what this disease can do watching my mother and am so grateful I am where I am through the grace of God!

[kdali]

Welcome! I am sorry to hear that you’ve had a life of MS, but also glad to know of your miracle drug! Do you have restrictive airway from the medication or MS or both? I have a friend on a different medication that has developed it.

[cbella in reply to kdali]

My lungs and airways have been tested and they are fine. It seems to have to do with the nerves leading to the lungs that for some reason make them feel sooo heavy that it is hard to breath. I have an inhalers but it never takes my shortness of breath away completely.

[kdali in reply to cbella]

Oh, ok. ☹️

[cbella in reply to kdali]

What does your friend take?

[kdali in reply to cbella]

Gilenya. The specialists can’t agree on whether it’s progression or a drug side effect.

[Fancy1959]

Good afternoon cbella, it's Fancy1959. I wanted to officially welcome you to this awesome chat room. We promise to give you a safe place to come and ask questions, voice concerns, or simply speak to others who truly understand what you are going through.

I am so sorry you had to watch your mother fights this monster for years before you too were attacked by it. I was on tecfidera for about 2 years but while I was on it I went from relapsing and remitting MS to secondary Progressive so I had to get off with due to my increase in disability. I was going downhill fast when I got off of it but more stabilized now fortunately.

If you haven't yet please talk to you both your primary care physician and your neurologist about your breathing problems. Perhaps they can help to improve that. I do not recall many other people in the chat room having lung problems such as you describe. Now I've had similar problems but usually it's when my asthma is unhappy and has been triggered by some kind of viral infection. But with you speaking about your lung problems perhaps others in the chat room will reply and talk to you about similar experiences they are having. I am so glad you have found us and I can't wait to get to know you better. Until we speak again please take care. See if your mother also wants to join our extended family. Remember that together we are stronger! Fancy.

[cbella in reply to Fancy1959]

Thank you Fancy for your kind words! The breathing issue is a rare complication of MS; my mother has never had it and I really don't know anyone else who has. I would love to connect with someone who has a case of breathing problems from MS with RRMS. I find it seems to be mostly connected with people in SPMS who are really disabled. It is rare in those that have RRMS.

[Midgey_Midge06]

I have asthma like Fancy does. But i have a sister in law that is a respiratory therapist and says these type of lung problems can be very critical. I am glad u r here to share ur experiences and just as glad that u have a heightened awareness of what ur lung issues are. I find the subject fascinating 💜💜😁🎗

[greaterexp]

Welcome. I’m glad you found us.

You’ll be in my prayers.

[cbella in reply to greaterexp]

Thank you!

[Peruzzot]

Welcome to the group. Hope you're breathing issues improve. Ask your doctor to check you for pollen allergies. Cotten woods have been trying to kill me off for years now. When the white fluffy starts flying I start having breathing issues. I've been put on inhalers twice during high cotten wood pollen season. The first time the doctors thought 20 year old me was having a heart attack because of the chest pain associated with breathing. The EKG showed normal though. Next they did a chest x-rays. The x-ray looked like a had a lot of extra ribs from all the pollen that was stuck in my bronchial tubes. Doc said "Oh. That's not good." When he looked at my x-ray. The inhaler helped me cough all that gunk out of my lungs. I was put on "indoor" duty for 2 weeks. The following year I suffered the same thing again. Before getting assigned to Vicenza, Italy I had never seen cottonwood before. I haven't gotten hit with it that bad since but still have a hard time breathing when the fluffy stuff starts flying.

[cbella in reply to Peruzzot]

Hi Peruzzot,

Thanks for sharing! I have been tested for every allergy you can think of and the only thing I have a mild sensitivity to are adhesives. Weird, huh?

[Peruzzot]

Be thankful for a mild sensitivity. My worst allergy is alcohol. I have to read the labels on everything. Most people don't have to do that.