Your Mental Health is extremely important, what you have disclosed is potentially very serious and whilst you may understandably be sensitive of the subject because of your historical experiences, please don't let what's happened in the 'past' hold you back from getting help for the 'current' mental health situation your dealing with, be brave, be proactive and seek out the additional M/H support, because it definitely will be helpful to you!
http://www.aafp.org/afp/2012/0715/p173.html
The link above is very informative regarding 'Causes and Evaluation of Chronic Dyspnea' complete with differential list, and one include the corresponding diagnostic assessment by type, test evidence, clinical signs etc.
eg
Table 1
Neuromuscular
* Metabolic - Acidosis
* Neurogenic - Amyotrophic lateral sclerosis, muscular dystrophies, phrenic nerve palsy, poliomyelitis
Table 2
* Neuromuscular
-Respiratory muscle weakness
-Phrenic nerve palsy
-Known neuromuscular disorders, weakness
-Atrophy
-Maximal inspiratory and expiratory pressures
Keeping in mind that 'dyspnea' was what lead you to the ER and thoughts about it being lung and not heart related...
"Now having lung problems; they said no heart problems.
tj3762
I wanted to post again with my continued and NEW lung symptoms......
I did end up in the ER one night after a Pulmonary Function test, which of course was normal. I was having shortness of breath and went into hyperventilatory episode with severe carpopedal spasms. The ER doctor did a CAT scan of my lungs to rule out a blood clot, which was normal.
Since that time, I continue to be unable to lie down at night on my left side with extreme chest discomfort and difficulty in breathing. I am now having to use 3 pillows to keep my head elevated and having to take 2 mg of Dilaudid at night just to be able to lie down.
My PCP ended blowing me off, saying that it was not my heart or lungs, so it is ANXIETY, wanting to change my medication.
I self-referred myself to a pulmonologist recently and he said "my lungs were fine....."
The difficulty breathing hyperventilating situation genuinely could of been due to your anxiety and upset over the entire painful situation without an answer or solution, that isn't to say the 'original issue of chest pain' doesn't still exist, or should be conveniently passed off as being anxiety related..
All your heart and lung related test results didn't find anything abnormal, so i think the questions to ask your general dr or pain physician are - what medical explanations are the more likely causes of left side only, extreme chest discomfort/pain, difficulty in breathing at night and when i lay down?
What tests haven't i had that will rule in or out those potential conditions?
Hope that helps.....JJ
PS thank you for the apology
You might have Aetectasis it is when sacs in the lung do not fill with air.
Alex
Long before i became a community leader in our little MS community, the CL's had adopted a no question is off limits policy and without judgement, this community has continued to openly discuss every MS related issue and that includes being brave enough to respectfully talk about mental health issues whilst being supportive of 'everyone' diagnosed or not.
I am extremely reluctant to talk about mental health issues, when someone has already assumed meaning that was 'never' stated or written, implied or intended and then become upset enough with the way they were thinking and feeling to take it out on someone who's only crime was being concerned about them and trying to help, 'please' don't attack me...
Like many other chronic medical condition, MSers can also experience mental health issues as a primary issue due to lesion placement, lesion load, brain atrophy etc or as a comorbid secondary issue due to medication side effects, chronic pain, expanding disability, fatigue, sexual, bladder or bowel dysfunction, unemployment etc etc etc
People with MS unfortunately have a higher risk of depression and suicide than the general population, having a safe place to vent and discuss all issues helps relieve some of the emotional burden...
"The most common emotional changes in MS include:
grief (and sadness): natural reactions to the changes and/or losses that MS can cause. These feelings will likely ebb and flow over the course of the disease.
worry, fear, moodiness, irritability and anxiety: normal reactions in the face of unpredictability; anyone can become irritable and anxious when faced with difficult challenges.
depression: one of the most common symptoms of MS.
Depression, persistent anxiety and extreme irritability are not natural or inevitable, even in people with MS. However, they are very common. These changes require treatment just like any of the physical symptoms of the disease; mood changes can be a significant source of pain and distress in and of themselves."
http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Emotional-Changes
Q:Can anxiety cause multiple sclerosis?
A: Cause, no...MS is caused by demyelinating brain and or spinal cord lesions, anxiety is not.
Some types of anxiety disorders can definitely mimic neurological conditions like MS, similar symptoms, different causation, no measurable neurological clinical disability etc. When someone with conversion disorder, or health anxiety is experiencing similar symptoms, the symptoms are 'basically' not from neurological damage but a physical manifestation of their mental health.
The symptoms people with mental health causation experience multiply and escalate (or the reverse) in line with the amount of attention, anxiety and fear they're experiencing. I personally believe M/H caused sx's is a legitimate yet different type of medical situation, with very different treatment options, it may not be the same type of medical condition as MS but that doesn't lessen or dismiss what people with mental health issues can actually experience imho.
Due to the nature of anxiety, anxiety can actually make any physical or organic issue a much worse experience until the anxiety is addressed and back under control eg dx vertigo - the unpredictable imbalance understandably can create concerns of falling down, they may not have actually fallen but the possibility of falling is understandably of concern.
Anxiety may already be a preexisting condition and or triggered by the vertigo and the understandable concern of the next time possibly falling and really hurting themselves. When not specifically addressed, treated or cognitively challenged (ie SSRI's, cognitive behavioral techniques etc) anxiety will typically continue to escalate....the fear of falling can become more disabling than the reality of the medical situation, and or cause additional associated mobility disuse issues etc
Anxiety can build until someone is in serious serious medical crisis, no one is immune to mental health issues, it doesn't matter who you are, doesn't matter if you are rich or poor, tall or short, male or female, big or small, highly educated or not, employed or not, old or young etc etc.
Being proactive about mental health is always in peoples best interest, and when someone has a dx medical condition with a higher risk, looking after any mental health issues that arise, as they do with the physical, can only be to their benefit in the short or long term!
I am sorry you took offence but that was never my intent.....JJ
I definitely will step back because i 100% did not try to diagnose you with anxiety at all, mental health can be a very sensitive subject to talk about and i am more cautious of being misinterpreted or attacked but i am very sorry if that is all that you got out of what i've written and i wish you luck in your future!
It is extremely doubtful that you have ever officially been dx with 'Benign MS' when both your neurologist have a "code of silence" regarding MS....."It took years for him to say those words "benign MS" and he only said it once, and then it was back to silence"
Taking a brake from the search for what ever reason is sometimes the right thing to do at the time, after 13-14 years without any MS associated evidence, MS realistically is a very unlikely explanation and one of the conditions that mimics neurological symptoms without causing the neurological (clinical) abnormalities would have to be more likely....
It honestly doesn't make sense for any neurologist to be consistently avoiding-deflecting-ignoring any MS related discussions with a patient, when that patient has been dx with MS by their own clinic. The only thing that makes sense of it to me, would be that you've misinterpreted the meaning of that one time only benign MS comment the other neuro made a couple of years ago and the MS silence is because neither neuro have the opinion that your symptoms, clinical signs and diagnostic evidence over the 13-14yrs is suggestive or consistent with MS.
Take a step back and think about it, IF in the beginning your first neuro would discuss MS with you and over that decade he changed from talking to silence when ever you specifically brought up MS, wouldn't it be possible that talking about MS with you was seen as encouraging you to continue to have concerns about MS and the silent tactic is to try to discourage you from having concerns about MS?
I've also been trying to make sense of how oral steroids could cause all that to happen and after so little....generally IV steroids are prescribed for MS relapses and sometimes oral steroids are added to help minimise relapse rebounding. MS symptoms reduce-recover during the steroid coarse, similar to what happens with any other autoimmune inflammatory related condition eg rheumatoid arthritis, lupus, systemic vasculitis, inflammatory bowel diseases etc basically steroid treatments reduce the activity of the immune system by affecting the way white blood cells work, reducing the production of chemicals that cause the inflammation and thus reduces the symptoms.
Oral steroids are not as effective in the short term, dosage strength and long term use increases the risk of side effects, so unless you had an uncommon allergic reaction i can't work out how that could of happened so quickly.....non enteric coated oral steroids can definitely exacerbate acid reflux and GERD causing swallowing issues even after only 1 tablet, so maybe an explanation of sorts.
I know you believe your health related anxiety only ever comes afterwards, you might be right but anxiety is something you have mentioned throughout your posting history, so you probably should seriously consider how high your anxiety already was before you even started the steroids, the way you reacted to them so fast 'could' have more to do with your anxiety levels than the medication.
Keep in mind that whilst steroids are known to cause or exacerbate mental health issues like anxiety, high does IV steroids generally don't do much for the first day or so, mental health reactions typically take longer when in tablet form. For months you have already been experiencing a lot of anxiety over what could be causing the chest pain/breathing issues, your related test evidence did not show up any organic abnormality, anxiety being mentioned again by dr(s) etc and if you were experiencing more anxiety over not wanting those old symptoms to show again......it honestly is possible that your anxiety over your health impacts your symptoms and or has become a bigger issue than what you have so far understood it to be.
Understandably mental health can be a very confronting issue but it will always be in your best interest to be proactive and get the opinion and support of a psychiatrist or psychologist when you are experiencing mental health issues, so regardless if you decide to take a brake please please consider getting the extra help for the anxiety you are currently dealing with.
Hugs.....JJ
Thank you, JJ, for all your help and information on this.
Believe me, I totally agree with you. I have never, ever understood it at all what is going on with my docs, and why they have a code of "silence" and not talk about it. My first neuro, Dr. Berke, was supposed to be well versed on MS, but not for me..... It took years for him to say those words "benign MS" and he only said it once, and then it was back to silence.
When I messaged my neurologist's office to try a steroid pack, I said "I do not know if it is MS or what, or even benign MS as Dr. Berke had stated", but I need to try something.
He did send in a Medrol Dosepak but with my taking the first 3 tablets, all HELL broke loose and I had all my numbness and tingling ramp up severely and was unable to swallow. I had so much anxiety because I did not want those old symptoms to show itself. Nonetheless, I stopped taking them. I could not handle that.
I am starting to reside myself to just let it all go and I may never find out what it is and why I am getting worse and worse, with more and more symptoms. Even lupus, I have searched on is extremely difficult to diagnose. I did this when 2 years ago my (what they call Rosacea) came out of nowhere and I started having autonomic things start happening.
If anything else happens, I might go to go to the Cleveland Clinic. I was there many, many years ago for a second opinion in the early onset of my disease and everything was negative in 2004. It can very so stressful fighting something you cannot see. At this point though, I think I have resigned myself that I will never be treated for it, so I should just let it go.
Thanks again, JJ
terri
IF you are still seeing the second neuro who the first time you saw him only wanted to talk about your migraines with aura and nothing else, i would highly recommend you get copies of all your records from the clinic, and seriously consider changing neurological clinics!
"..after 11 years being with the same neurologist and his waxing and weaning ideas, not stating what I have to saying it is "benign MS", I am tired of him not understanding that I AM GETTING WORSE and him not even wanting to at least try IV steroids...." It is likely that your replacement neuro a year or so ago, being from the exact same clinic, has and will 'continue' with the same mindset the first neurologist at the clinic did.
It wouldn't think it would be unreasonable with all that you've gone through, to actually check your records to see if benign MS has ever been one of your official diagnosis and what it was based on.....migraine with aura might be the only diagnosis you have in your records, or as the years added up and you've continued to have normal neuro evidence eg absent lesions and normal clinical signs, migraine with aura has become the dx of exclusion or convenience.
To be honest I can't understand how your first neuro could of come up with 'benign MS' in the first place, 10-15 years ago benign MS was mainly a dx post mortem or when a patient's MRI's did have demyelinating lesions 'and or' they fully met the Mcdonald criteria but their clinical signs were normal or they'd accumulated very little disability ie EDSS of 3 or less after 10yrs, it still is one of the rarely used MS definitions today, benign MS is misleading and still a very controversial dx, so if you've always been told your MRI's are normal, please double check if that's actually true.
Your original neuro would probably of been dx using the 2005 Mcdonald, that version was more about lesion counting, you needed 9 or more in the same location we need today, and dis and dit, it was a lot harder to meet the criteria but it was replaced in 2010 with patients needing a lot less eg 1+ lesion in at least 2 of the specific locations but patient could get dx with 1 MRI showing both old and new lesions, dx becoming faster and patients being on DMD's a lot sooner than ever before.
The Mcdonald only mentions the 1.5T MRI and the 3T that is more available now actually shows up approx 25% more, so if your 3T MRI's did not find the lesions, LP, VEP's, clinical neuro exams etc are all not coming up with the MS suggestive/consistent diagnostic evidence after 13-14 years, then it really really would be in your best interest to get a fresh opinion on whether MS is your potential dx with the totality of your diagnostic historical evidence.
Please don't waste another day with a clinic that takes almost 14 years before 'trying' IVSM in a patient they've suppose to of dxed with MS, something is off, very off....i think you need to find out what this clinic is waiting to happen to 'you' before they'll get off the fence and start treating the actual disease you've been diagnosed with. The answer may not be what you expect but it would have to be better to know imho
Hugs.......JJ
How'd it go with your neurologist or pain management doctor, are either of them going to run tests to work out what is causing it?
I actually got a bit confused reading your posting history on what you were thinking it is and what you ended up being diagnosed with......i got the impression, possibly by the medical terminology you use, that for years you've gone to your dr's with a firm expectation of what you think something you've been dealing with is going to be diagnosed as but so far, what ever related tests you've had, neurological or not, your test results have consistently been normal and or without objective diagnostic evidence that it is neurological.
If that's even half way true, may be the why of it has more to do with the types of tests being run, not being the right tests to diagnose the underlying issue(s). I'm wondering if once the test results don't corroborate, instead of going back to the drawing board and continuing the search, your doctors stop trying to find the alternative diagnostic evidence that could potentially bring everything you've experienced all together and finally work out what you've been dealing with over the years.
I've got a few stories of family members with a reoccurring medical issue being left un-diagnosed until, for what ever reason, a new doctor ran different tests and found the diagnostic evidence to diagnose, so it definitely does happen to people and worth considering IF despite all the tests you've had, a lot of it is not association to what you have been diagnosed with (ie thyroid, reflux, rosacea, migraine etc) or left without a definitive answer.....
BTW i was looking up something for my daughter who has a life long history of GI issues and is currently being tested for celiac (again), but also Crohn's, irritable bowel disease and colitis and i came across this and i thought of you, it 'might be' relevant....
"As in their previous comorbidity studies, Dr. Alexander Egeberg and colleagues from the University of Copenhagen tracked more than 4.3 million individuals in the Danish National Patient Registry, including 49,475 who were diagnosed with rosacea, for five years.
The investigators found that there was a higher prevalence in rosacea patients of a variety of GI disorders. Compared with individuals without rosacea during the study period, those with rosacea were 46 percent more likely to have celiac disease, 45 percent more likely to have Crohn's disease, 34 percent more likely to have irritable bowel syndrome and 19 percent more likely to have ulcerative colitis."
"A small study at Johns Hopkins University in 2015 also found that rosacea patients were more likely than people without the disorder to suffer from gastroesophageal reflux disease (GERD) and other GI disorders."
https://www.rosacea.org/weblog/potential-link-found-between-rosacea-and-gi-disorders
What did the urologist determine your different bladder types were, mixed incontinence is when there's more than one different type, from memory i think stress incontinence is the most common and uti caused urge incontinence the second, the third most common is when these 2 are combined...you said your OBGYN didn't find anything but thought it could be to do with your detrusor muscle, was she right and your urodynamic test results were abnormal?
We've actually had some other community members who where stuck in limbo without enough evidence and after a second opinion, being dxed with neurogenic bladder along their other suggestive clinical evidence they got dxed, mind you your neuro should have some thoughts on what condition it is, if not MS what does your neuro and PMD keep putting your symptoms down too hmmmm maybe if they don't have any answer you really should consider getting a new neurological opinion, it might just get you out of limbo.
Hope your doing okay, don't mind my rambling thoughts, just throwing ideas at you in the hope that something hits a lightbulb :D
Hopefully something in there, helps....JJ
I've only had a few minutes to put this together whilst i've been on short breaks, so i hope this makes sense......i had a quick look in your posting history and noticed just back in june you were concerned something could be wrong with your heart, you said "heart problems like palpitations, flops etc..... I had an episode last week along with some dizziness and blurred vision where I thought I could be having a heart attack, but then realized I may be having just an autonomic response with my heart"
you also mentioned having difficulty sleeping because of heartburn "I had trouble sleeping last night due to a different than normal heartburn sensation" you indicate your heart and lungs testing is normal, breathing and chest pain is better when your upper body positioning is elevated to sleep......honestly it sounds very reminiscent to the symptoms associated with GERD.
People with GERD can definitely have very painful chest pain and it's not uncommonly mistaken for a heart attack, technical name for this type of chest pain is none cardiac chest pain or NCCP for short but GERD isn't the only cause eg inflammation of the pancreas, gallstone disease, asthma, inflammation of the rib cartilage, injured bruised or broken ribs, pulled muscle, anxiety or panic attacks, shingles, chronic pain syndrome ie fibromyalgia
this link has a simple explanation and gives a list of alternatives to GERD which might give you some ideas http://www.healthline.com/health/gerd/chest-pain#Overview1
My mother does have a mental health condition, and unfortunately it's pretty common for her other medical issues to be thought to be due to her MH, it often takes a medical crisis before she's not dismissed and she gets treatment. Anxiety can make any medical issues worse simply due to the nature of anxiety but when there's the possibility of an alternate underlying cause, it still requires rule in or out to be correctly diagnosed and appropriate treatment plans.
Mum's chest pain was dismissed as anxiety related acid reflux for years, until she ended up in hospital with an inflamed pancreas and needed her gallbladder to be removed.....you've mentioned 'anxiety' a few times and if you haven't had your mental health appropriately assessed by a psychiatrist or psychologist, i would strongly recommend that you consider doing so.
I am 'not' saying that your situation is mental health, just that it is always going to be in your best interest when the 'go to' explanation for your dr's ends up being anxiety....to actually have the potential MH explanation appropriately assessed, just like you would with any other potential medical condition is usually very helpful, it's definitely not going to hurt to have professional back up with MH causation's ruled out too, so please consider the overall benefits!
Hope that helps....JJ
I had thought of the MS hug but you just haven't described what you've been experiencing in even a remotely similar way, with the hug it's more commonly described as a tight banding feeling that fully or partially surrounding the torso, it can be as painful as childbirth to annoyingly uncomfortable.
Typically the intercostal muscles that are between the ribs spasm and or lock down in it's contracted phase, which restricts the rib cage from expanding and contracting whilst breathing, though air hunger and hyperventilating etc are not usually a common part of the hug experience. One of the tips to help with the hug is actually to lay flat and take the load off, it helps simply because your spine isnt doing all the load bearing, muscle work etc when you lay flat.
The first time i was dx with intercostal muscle spasms was back in 08, the entire left side (front to back) of my rib cage was visibly contracting basically when ever i breathed out and the left side got stuck. No matter how hard i tried i couldn't stop the screams from coming out of my mouth when i exhaled, and i was honestly trying damn hard cause my ASD brother was freaking out big time and it wasn't helping the situation any.....i kid you not it is more painful than natural childbirth and there is no bundle of joy to make the experience worth while :D
The first time the really painful spams lasted non stop day and night for 3 days, the spasms continued for i think 2-3 months, definitely not as bad with more time between the painful spasms thankfully! I've had it happen on and off ever since, sometimes the left side is just a really weird kind of sensation hmmm think of that first sensation you get when you've just ripped off a sticky bandage. I've currently been experiencing it again, oh it will be 4 weeks tomorrow lol i'm trying to ignore it and just keep going...
In MS it's caused by spinal cord lesions and whilst the MS Hug is associated specifically with MS, there are other conditions that cause similar chest restriction, off the top of my pea brain there are structural spinal issues, thyroid but i don't have time to look them up for you now, it's 1am over my side of the globe and i was just logging off, hopefully i'll have more time online tomorrow....
Hope that helps....JJ
Hi and thanks JJ for your reply.
My Pain Management Unit had given me Dilaudid for my severe migraine attacks, so I would not have to go to the ER each time for a shot.
I have not taken the Dilaudid in over a year, so I am pretty sure it is not that, although I also did think about it before. The Toradol shots I use for my migraines, but I cannot remember using it when this all started.
I think this is probably just one of those years that all heck broke loose. First, my urinary incontinence problems and then this chest pain/lung pain stuff came out in the spring.
I am thinking about going to my Pain Management doctor to see if possibly some kind of a nerve block--thoracic could help.
I also am wondering if this could be a prolonged MS HUG as well; that will not let loose.
I am thinking something with my diaphragm happened and I panicked, causing the hyperventilation episode sending me to the ER along with having those darn carpopedal spasms, which was VERY uncomfortable to say the least.
I am wondering if others in the community have had an MS HUG lasting awhile and could it cause not being able to lie on one side at night?
Thanks again,
Hi TJ,
Carpopedal spasms are definitely associated with hyperventilating episodes and yes mental health issues of anxiety and panic attacks are the more common explanations, but i wonder if the increased issues youre experiencing could actually be from the types of medications your taking or a combination of.....have you ever heard of 'opioid-induced respiratory depression'?
Sorry i don't have much time online today, but i just wanted to let you know i've seen your post and I am thinking about your situation, i'll get back to you with more thoughts later, but check out the individual medication side effects and in combination to see if there is a potential explanation happening there..
Hugs.......JJ