Last reply 3 months ago
Breathlessness or respiratory problems

Hi i posted a question on another site but no one replied. I hope someone replies here.

I was wondering if anyone of you have breathlessness with your other bunch of symptoms. I’ve had it each of the 3 ” relapses” I used to think it was adult onset asthma but this third time it pretty bad and lasted quite long. And the inhaler and prednisolone didn’t help and the Drs kept saying my chest was clear. But God bless him , my Dr then gave me Gabapentin and Miraculously i could breath again! As in i didn’t get out of breath talking or going to the loo.

I really want to compare my experience with someone else because so far i haven’t spoken to anyone who has had this as part of a neurological problem. Which is kind of isolating.

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cameron
4 months ago

Well, the success of the gabapentin plus the tie-in with your relapses do suggest that this is MS-related. I expect your neuro will have seen it before, but probably not surprising that your GP hadn’t. I don’t know the mechanism of gabapentin – whether it can only be taken as and when needed or could be taken as a preventative. Maybe something to ask the neuro?x


stumbler
4 months ago

@cosine , I think you may have been suffering from an MS symptom called Banding. It’s also known by the misnomer, the MS Hug.

It’s when the intercostal muscles go into spasm. These are several groups of muscles that run between the ribs, and help form and move the chest wall. The intercostal muscles are mainly involved in the mechanical aspect of breathing. These muscles help expand and shrink the size of the chest cavity to facilitate breathing.

There’s more details here:-

https://www.mstrust.org.uk/a-z/ms-hug


cosine
4 months ago

@ stumbler It says people with MS hug find it painful to breath i don’t think i did. I just got out of breath and started getting very strong palpitations.
That made me walk at snails pace to stop me getting too out of breath.
Theres this national ms society page about respiratory problems that i think matches what i felt like but its still a page. I want to find a person that actually felt breathless on activity because when i rested for abit itd go away but as soon as i tried to do ANYTHING itd come back.
@ cameron Yeah i have to take it constantly ive been on it since the beginning of dec i think. And i kept trying to lower the dose but something else would force me to increase in again and when i did i had mood issues so now im just going to hold it steady for a while.


grandma
4 months ago

@cosine as your in the uk, do you have a ms nurse? Best person to go to in the first place because as a rule, if it is ms related, he/she will have a better idea than your gp.👍😍


vixen
4 months ago

Hello @cosine, I become breathless when talking/walking when I’m having a dip in my health. This has only happened in the last two years since being diagnosed.


samanthathompson
4 months ago

Hello,

I get breathless when doing something but nothing too bad. What I dont like is the shallow breathing I get when at rest. It happens a lot and its hard not to panic, it doesnt hurt but im very aware that my breathing isnt right. I was going to get checked for Asthma soon because I am concerned.
I recently had a reaction to DMD i was taking which affected my lungs quite badly but fortunately my chest X-ray was clear.

Sorry you are having problems too.

My Neuro appointment is next week and i will ask about it as I would like some reassurance!

Sam x


mlgilber1
4 months ago

I get this and I don’t think mine is related to MS hug at all. The MS hug is painful. This just feels like I haven’t worked out in a long time and I get out of breath for minor things. I’ve been on gabapentin for over a year and it doesn’t help me breathe, but it doesn’t help my nerve pain either. I’m glad it helping you!


cosine
4 months ago

@vixen what do you attribute it to ? I asked ms society and the sent me some links and said they were going to put info on their website next year. I gather its muscle weakness but its the breathing muscles.

@mlgilber1 is the Gabapentin for muscle spasms for you? Omg if it didn’t help me id be just bedbound. Gaba didn’t make my breathing fully normal but it allowed me to do normal everyday things . So i still got out of breath running up the stairs which i didnt before. But i think i just got better myself eventually…. actually or was it the built up affect of gaba? Hmmm…

@ samanthathompson
Please let me know what your doc says. I hope your appointment goes well and u come back satisfied x

@ grandma im not even diagnosed !! In limbo. So no ms nurse!


mlgilber1
4 months ago

I get the gabapentin for nerve pain and I’ve been on the max dose for about a year. They switched me to lyrica, but I’m having s hard time getting it approved yet I meet the qualifications and they approved it for one month for some reason. I take baclofen for spasms. I’m going to mention the being out of breath to my MS specialist. It’s weird because it comes and goes. I’ll have it for a week and then be fine and I can get out of breath just from standing up and taking a few steps!


cosine
4 months ago

@mlgilber1
Didnt see ur reply!

Yeah its good to get baseline lung function so u can tell if it has decreased thats what it says on that national ms website. Yeah that happened to mee aswell getting out of breath from standing… its so like weird… do you get palpitations too? Initially mine started and got worse and worse and then it did that coming and going. But i haven’t gotten that getting out of breath standing since taking double the initial gaba dose. Drs said its probably because of weakness in breathing muscles u know like u get arm / leg weakness. Just like that but its lungs muscles.

Never heard of having to get meds approved before! What do u mean?


mlgilber1
4 months ago

@cosine Here in the US in order for some medications to be covered by your insurance they require a prior authorization by the insurance company otherwise you have to pay full price. It’s a pain and the medication is $500 for a one month supply here. I’m going to appeal it and hope they cover it.


optimstic
4 months ago

@stumbler I agree with you, but in my case and I think in @cosine case .. it’s more of (I forgot to breath) after reading about it and checking my meds .. I take gabapentin for nerve pain .. which is basically an inflammation.. gabapentin helps in healing that kind of inflammation.. with that said .. it makes sense that the brain now send the right signals to the muscles in my lungs .. to inhale and exhale .. anyway .. it’s just my theory of how gabapentin solved it for me .. check with your nurse or doctor for the right and best thing to do in your case ..

Be OptiMStic 🙂


dominics
4 months ago

What has your neuro/gp/msnurse said this may be?

For a medical symptom they probably ought to be your first port of call.


cosine
4 months ago

@dominics i think gps think its muscle weakness in the ventilation muscles he did give me gabapentin for it so … no body is telling me anything properly yet. But im ok now gaba works so i dont mind


dominics
4 months ago

@cosine For future reference: do you have the contact details for the MS nurse team? They often know more MS specific info than the GP (depends on their clinical interests). If they ever think something warrants the consultant they are the ones to fit you in to clinics at short notice. They are a fantastic resource.


robin_geneau
4 months ago

I have had banding (MS Hug) off and on. For me it is uncomfortable but not painful. It does restrict my breathing although my lungs are fine. The only thing that works for me is cupping. Typically 2 treatments and the banding is gone for months. My neuro had never heard of it but I was so positive that he made a point of noting it. Gabapentin would probably help but I can’t tolerate it.


jane_watts
4 months ago

MS hug isn’t painful yes seriously uncomfortable, I suffer this on & off more the stomach region so eating even little & often can’t always happen.
Eventually it subsides.


cosine
3 months ago

@ Dominics i dont have any dx so its just me gp for now.

@robin_geneau
Does it come on with exercise? Mine did and went away after abit of rest

Thank you all for your responses!


stumbler
3 months ago

@cosine , any MS symptom can “appear” when your core body temperature rises, e.g. through exercise. You can blame Mr Uhthoff for that :-

https://www.mstrust.org.uk/a-z/uhthoffs-phenomenon


cosine
3 months ago

@stumbler in my case exercise meant walking to the toilet and talking aswell! Which wouldn’t cause any significant rise in temp! I breathing more meant more spasms in my case…

Still abit clueless waiting for the neurooo and im going to see gp on thurs and push him for some answers. He’s been too quiet.


stumbler
3 months ago

@cosine , don’t push your GP too hard. They can feel out of their depth with MS, it’s a bit of a specialised area………..


robin_geneau
3 months ago

Stumbler thanks for explaining that about the core body temperature. Any symptoms that I have that come and go happens when my core body temperature changes. Not when it is hot out! Maybe some have that but it’s a distinction that is very impt to me.

For anyone struggling to get a diagnosis……..it can take a long time……..for a lot of different reasons. Lack of education (GPs) shortage of neurologist. My neuro wouldn’t diagnose me until my lumbar puncture. I was probably 10 years between first symptom and diagnosis. My first diagnosis was shingles when one side of my face went numb. At the ER.


robin_geneau
3 months ago

For instance, I can swim no problem. The cool water keeps me from heating- I can go for hours. It seems like a nice break from the MS. Although I love the hot tub I can’t stay there long.


cosine
3 months ago

@stumbler
I just want to know how he knew gabapentin would work. He hasnt mentioned ms to me . I mentioned it to him. This time and 2 years ago and 3 years ago. Initially he thought it was all in my head but i want to know what he thinks now. I want something out of his mouth. I feel abit bad being on here because everyone says its so bad to self diagnose etc etc…


cosine
3 months ago

Thanks for sharing @robin_geneau


stumbler
3 months ago

@cosine , Gabapentin is a drug to address neuropathic pain, so the GP must have considered this to be nerve pain.


cosine
3 months ago

@stumbler i do remember him saying how it will relax my muscles so maybe he thought it was spasticity . It also says gaba is used to treat that.


stumbler
3 months ago

@cosine, that’s a fair assumption.

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