March 3, 2021 at 9:07 pm #193012Intercostal Neuralgia
Hi all. Just wandered if anyone has heard of or had intercostal neuralgia? I had an episode a couple months ago which I’ve never had which was the most awful pain I’ve had on the left side of my chest. It got steadily worse over 4 days and on the 5/6 day it was unreal! I ended up calling nhs24 at 5 in the morning. They said it wasn’t heart related as it came on more with movement and to call the GP when it opened. They didn’t give me any clue what it was and just prescribed me diazepam naproxen and cocodamol. Obviously just a phone appointment! Anyway I watched something the other day and intercostal neuralgia was mentioned and it sounds exactly like what I experienced. Reason I ask is I never want it to happen ever again and if anyone has had or heard of it and had any ideas of what may cause it?March 4, 2021 at 12:31 pm #193017Reply To: Intercostal Neuralgia
Hello Ems. It would be very had to tell the origin of the problem without a physical examination, and possibly some tests. Perhaps you could tell us what your doctor found when s/he saw you? I would also ask if you have MD yourself and what sort? I have FHSD with complications, one of which is bilateral failure of my intercostal muscles. But I have never come across intercostal neuralgia. I have experienced very serious and debilitating pain in the left and middle of my chest from oesophageal reflux. Hence you could see my suggestion about a physical exam.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015March 4, 2021 at 1:10 pm #193018Reply To: Intercostal Neuralgia
Hi Mike. Many thanks for your reply I have LGMD. Diagnosed 3 years ago. I get painful muscle spasm usually in the shoulder area. Never in the chest area before this. It definitely came in spasms. I could find a way to sit and there would be no pain until I moved again. The doctor only spoke to me over the phone which was probably for less than five minutes and told me there would be a prescription for me to pick up in the afternoon. I think if it happens again I would be demanding a physical appointment
I know Dr Google is the wrong thing to do but seeing a doctor has obviously been a bit of a challenge lately. Do you have constant pain with the muscles Mike or is it intermittent? I seem to get lots of painful spasms every so often but the consultant says that’s common with the one I have. I am still fully mobile with a bit of a rubbish knee!March 4, 2021 at 10:06 pm #193044Reply To: Intercostal Neuralgia
Hi Ems what type of LGMD do you have?
Regarding using Google for self diagnosis I have seen my gp in his office using Google regarding symptoms.
I think if you have spent awhile looking at all symptoms and other related issues Google is fine to point you in a direction of some sort.
GPS are general practitioners who mostly are not specialists in any fields and are just the gateway to what the next steps should be as in what method is best for diagnostics or what specialits to be referred to.
I keeped on about my leg weakness and got fobbed off for a few years, when getting a routine blood tests I asked my Gp to add ck test in which they refused as said no point so on day of blood I told the nurse my gp requested ck checks also in which she printed off a new blood test check including ck tests in which was the start to my road to getting a diagnosis.
You must remember gp practices also operate as a business and some practices gets paid bonuses to not refffer people to hospitals or specialists by keeping the referral rates low as to take the “strain” off.
I have called my gp practice for a few issues over this pandemic and you have to really be pushy to get anywhere.
During covid I got my muscles biopsy, numerous blood tests and a heart echo cardio scan by being really pushy, the two different hospitals I visted was both mostly empty apart from the sections they use for covid wards. As many hospital appointments are cancelled most specialist departments are basically empy, the echo cardio specialist said they was told to take holiday as so empty.March 5, 2021 at 12:46 pm #193059Reply To: Intercostal Neuralgia
Ems, I am in constant pain everywhere. A lot of it is controlled with some serious medication, but it is always present. Without the medication I would not be able to move. If it happens again please do see a doctor, then you might be able to get a good answer to your problem. On the other hand I dearly hope it does not return. I also agree very much with Joe, be pushy, then you might make progress.
Bit of a cheeky move there Joe but it worked. So sad that you have had to do it to get a real answer.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015March 5, 2021 at 9:10 pm #193084Reply To: Intercostal Neuralgia
Hi both oh well Joe that’s the way to do it haha. I struggle to tell people close to me if I’m struggling! I have 2L. High cks found when I was about 19 but put it down to heavy exercise. Problems with pain started about 28 (36 now) and diagnosed 3 years ago. I have mild heart failure too. Do either of you have that? Oh Mike really sorry to hear you are in pain all the time. You always sound so positive on here, good on you Joe well done for being pushy, did they finally give you a diagnosis or maybe an apology!March 6, 2021 at 12:48 am #193086Reply To: Intercostal Neuralgia
No still awaiting had electronic needle tests, blood tests and biopsy. Nuro emails me for updates, last email he said should have results in a few weeks
I had researched alot and I m predict it’s 2L also as it is supposed to be least effected when younger. I’m near same age as you and problems started same time as you. Previously as kid I boxed to a high level and spent 5 years in marines I was super fit then this kicked in. I’m still working in construction as not mega obviously effected but I’m probably to stubborn to let it take a grip let.
Could you please give some info on yourself, how was your physical capabilities as a kid to young adult
What parts are effected , what do you struggle at doing.
I take it you have had a biopsy but was this result backed up by a blood test as MD is massively misdiagnosed if not confirmed with blood test. Heart issues are not part of 2L,is this another issue.March 6, 2021 at 5:05 pm #193088Reply To: Intercostal Neuralgia
So the heart issue is rare with 2L but not impossible. The cardiologist and neuro both think it’s connected however very strong history of heart disease in my family. Dads dad and brother both died in their 30s from heart issues. So I have always been very muscular, my team mates called me Christmas hams because of my forearms and calves always been a lot stronger than most people I know. Won all arm wrestles in pubs my calves have shrunk 5 cm each in three years. Not happy about that! I had the blood test and actually the neuro just went straight to doing that because of my calves. The thing I struggle with most is fatigue in my lower legs and painful spasms in my shoulders. Holding arms out stretched for too long is difficult like folding washing. So basically the fatigue is what gets me but haven’t really been bothered with weakness as such yet. My legs are definitely shrinking and I have bad knees from weakened thigh muscles. I’ve always been very active so I find it very difficult to pace myself and then regret it when I’ve done too much. Learning slowly!March 6, 2021 at 9:59 pm #193091Reply To: Intercostal Neuralgia
Yes understand all types can have other issues, how did they find heart issues, ecg first then echo cardio?
I understand about trying to pace yourself, you must of had a great nuro to look for that ano5 gene defect straight away, usually for full md gene defect analysis takes ages and they don’t do it as perfer biopsy first.
Regarding knees is it due mainly because the weakened thigh muscle connections to the knees which are weak. I thought it was my knees but it’s actually my effected quads as shown on mri
Have you had mri scans as these show the exact effected damaged muscles. As it’s genetic are other family members diagnosed?
I’m first in family with suspected md
I’m still working full time as a site engineer in construction but I’m planning now to look to move into another job with is desk bases rather than out on site and up/down laddersMarch 10, 2021 at 5:35 pm #193175Reply To: Intercostal Neuralgia
I’ve never heard of that but what you describe is similar to something I’ve experienced a few times. Once it was so bad I was on the verge of calling the paramedics. It hurts when you breathe in, and out and i couldn’t find any position that stopped it. Painkillers and heat pads helped eventually but it was quite scary at the time.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015March 11, 2021 at 8:16 pm #193191Reply To: Intercostal Neuralgia
Hey yes I was pretty close to phoning them as well. It was just horrendous. Interesting you have had something similar, maybe it is MD related. Did they give you any answers?
Hey Joe. Sorry for the late reply. So they did echo then a cardiac MRI. My neuro is brilliant. She first thought it was mcardles(I think) or pompe or something like that can’t remember. No idea how she thought to check for the 2L straight after. Amazing. I’m the only one with diagnosis and they checked my parents who are both carriers. My diagnosis took 2 or 3 months for the diagnosis since starting to see a neurologist. That obviously doesn’t include the years before of other doctors scratching their heads over it! Yes the knee problem is from weakened thigh muscles. I went for a scan privately just before Christmas and I have a flap tear on the meniscus. Now my thighs are not much bigger than my calves as I was off my feet for a bit with it. Physio says it’s harder to build the muscle back.
I think it would be wise to maybe start looking at other jobs that don’t require climbing ladders if you are feeling a bit less steady. I have cut down the time I spend on my feet these days and I have noticed a decrease in pain for sure. It’s all a learning curve!March 14, 2021 at 6:59 pm #193253Reply To: Intercostal Neuralgia
Sounds good nuro, my doctors are shocking, as mentioned I put ck test on blood test myself.
After I paid for mri myself, doctors said would be upto 6 months to see a nuro, I paid private and saw the same nuro I would be waiting on NHS to see in 1 week for only a cost of £150
Been near 1 year since biopsy.
I also looked into pompe as simar to lGMD.
I should have results soon, gp is calling this week
On you echo cardio did they find something that’s why you had a mri after.
Yes change of job is coming at some point.
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