Viewing 13 posts - 21 through 33 (of 33 total)
  • #77139
    Re: Weird Symptom

    This Ive was in a week. Think the last Iv would have been with I got my back done in 98.

    I asked one of the nurses when at clinic last week and she recomended massage. she basically said that the same line was probably in tto long and not flushed properly and a clot has formed.

    the weird thing is the first doc who put it in was great there was very little pain and he got a vain rght away. my arms are real thin and always cold and the veins tend to hide.

    If its still not budged in another week i will try and see if my GP will draw it before I take a fun trip back to A & E.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #77140
    Re: Weird Symptom

    @amgmod wrote:

    It can also depend on the efficiency and skill of the person who put the needle in.

    Oh yes indeedy!!!

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #77141
    Re: Weird Symptom

    The results on my bloated stomach / reduced appetite
    symptoms have come back.

    The Barium Swallow was completely clear, so no physical
    barrier. No alergy or intolerance. Therefore I am to put it on
    the long list of things to ask the Neuro Muscular Specialist.

    Interestingly the Doctor doing the Barium Swallow seemed
    very interested in a rare disease and weighed in with an
    interesting observation. He said this kind of thing can often
    come up from an irritable bowel, if you have muscle disease
    there are planty of muscles there he said. He asked if I had an
    irritable bowel (Yes, in spades the answer).

    Interesting, I have never considered my bowel problems to be
    related as with a long standing haemorrhoid problem I have
    never mentioned this to the specialists.

    I was amazed so many of you had similar stomach problems, do
    any of you relate to such observations. Sorry to lower
    the tone of the Forum this morning.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #77142
    Re: Weird Symptom

    I have just typed out a pretty damn long reply to this topic and I don’t know what happened. I went to post it and kazam it was gone. Ahhhh what a waste of time! :twisted:

    Wait, hang on. Lucky I use a separate spell checker and my post was still there. :lol:

    I have some stomach problems.

    They suspect its Chron’s disease. They have been doing “investigations” for a couple of years. When it first started I was on the verge of collapse due to internal bleeding. I could not eat anything, lost 3 stone in 2 months and had constant diarrhea. The pain I was getting was unbelievable. I was in a state of denial for about 3 months before I got anything done.

    I had a blood test done and my red blood cell count, HB level, was down to about 3.5 when the average should be around 15. I was rushed straight into hospital and had a blood transfusion. I had all the doctors coming to look at me because they could not believe how low my HB level was. Apparently I should of had a heart attack amongst other things. A couple of months after that my blood count was down again and back into hospital for another transfusion. I think my FSHD does have a bearing on it , due to the stomach muscles being affected by MD. Not sure about the internal bleeding though.

    I have had all the tests, endoscopy, throat end and bum end. A barium x-ray, which was fairly unpleasant. The barium “milkshake” was unbearable. I cannot describe the taste. Revolting, that will do. A new test where you swallow a camera about the size of a large pill and it takes a video of your insides for 8 or so hours. I think its a Capsule endoscopy. I am having another test soon, to check how things are. This has been going on for a while now and there still isn’t a definitive diagnosis.

    When it comes to food I don’t have much of an appetite. I think this is because I know when I am going to eat it is going to hurt. Also the food does not stay in me to long, exiting both ends as often as each other. Sorry about that! I can feel my bowel/intestines hardening sometimes and the food just squeezing through. I need to watch what I eat but there isn’t a set diet that works with Crohns. I keep a food diary, which is handy, and I use this to help keep my stomach in tack. If I eat after a certain time then my tummy swells up and looks like I have swallowed a football or that someone is pumping air into my tummy.

    Sorry about the in depth detail but I do think that there is some correlation between forms of IBS and forms of Muscular Dystrophy. I have had the same sort of discussions on many other forums and people always seem to have stomach problems.

    WW

    wingedwarrior
    Participant
    Posts: 67
    Joined: 10/01/2011
    #77143
    Re: Weird Symptom

    I have Duchenne, and I have struggled with an irritable bowel for about 15 years. it actually seems to have got better over time, although that may be because I know what foods I should avoid now. but many of the people I’ve talked to with Duchenne have stomach problems of some kind or other.

    for the last year I have had real problems with bloating after meals. it’s got to the point where I can no longer sit upright at my desk and must instead recline my wheelchair and use a laptray instead. as long as I don’t sit forward ( which kind of presses on my stomach) I am okay, but it’s quite frustrating as I used to be able to do more for myself when in that position. So it’s definitely postural.

    I’m not sure why I suddenly started to have this problem, my current theory is that my increasing breathing difficulties was causing me to swallow air at mealtimes, thus leading to bloating.

    jonhastie
    Participant
    Posts: 7
    Joined: 03/01/2011
    #77144
    Re: Weird Symptom

    @wingedwarrior wrote:

    ….I do think there is some correlation between forms of IBS and forms of Muscular Dystrophy. I have had the same sort of discussions on many other forums and people always seem to have stomach problems. WW

    Lot of good logic in what you say. Lots of people on the
    USA forums report similar problems. I feel they are still on
    a learning curve here and still a way to go.
    One dietician thought muscle disease is affecting the
    peristalsis and slowing the digestive transit and retainging
    food in the stomach which is then continuable redigested
    causing bloating and resulting in food of wrong consistency
    for bowel muscles to deal with in the normal way.
    I was investigated for Crohn’s early on but they moved on.
    Lte’s hope they get there soon.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #77145
    Re: Weird Symptom

    @jonhastie wrote:

    I have Duchenne, and I have struggled with an irritable bowel for about 15 years. it actually seems to have got better over time, although that may be because I know what foods I should avoid now. but many of the people I’ve talked to with Duchenne have stomach problems of some kind or other.

    for the last year I have had real problems with bloating after meals. it’s got to the point where I can no longer sit upright at my desk and must instead recline my wheelchair and use a laptray instead. as long as I don’t sit forward ( which kind of presses on my stomach) I am okay, but it’s quite frustrating as I used to be able to do more for myself when in that position. So it’s definitely postural.

    I’m not sure why I suddenly started to have this problem, my current theory is that my increasing breathing difficulties was causing me to swallow air at mealtimes, thus leading to bloating.

    Sorry you are having such problems John.

    You are spot on about selecting the right foods to eat. My
    diet has changed completely and some richer foods just cannot
    even be considered. It is a constant struggle to get enough
    calories per day, very often by fortifying foods and drinks
    with milk powder or food supplements.
    You are right there are postural elements and I feel we have
    to work out a lot or workable methods. frustrating is the word.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #77146
    Re: Weird Symptom

    real problems with bloating after meals. it’s got to the point where I can no longer sit upright at my desk and must instead recline my wheelch

    more and more I am having to stand when or shortly after eating or drinking or I have problems breathing. If I stay sitting, ie if I am forced to eat out, I find I end up, what I call crashing when I come home. I basically have to lie down and use vent and sleep it off but its not a real sleep. food has a booze like reaction to me now

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #77147
    Re: Weird Symptom

    Hi

    I think that if they got a bunch of interested Neuro MD specialists,gastro specialists and all the people who are experiencing these problems they would progress into better understanding or management.

    Here we all are, trying to figure it out, sharing experiences and the obvious similarities. However, my Neurologist for MD (and 3 before that since my diagnosis many years ago when I lived in different areas) have NEVER discussed digestive system difficulties and how to manage these. Either as:

    a) A ‘side problem’ caused by say scoliosis or made worse by an MD symptom
    b) Something linked to the MD gene [keeping it simple] itself e.g. particular muscle weakness targeting those of the digestive system.
    c) Part of another medical condition where typical symptoms are hidden or heightened by the fact someone has MD.
    e.g. I have a friend with MD where she had the symptoms we are describing and they were from Ovarian Cancer.

    Either way, just as we see a neurologist, should we not also be seeing gastroenterologists routinely?

    Like many people here I have had gall stones (that were missed by my hospital and GP for several years where I was treated for excess stomach acid). After removal of my gall bladder all the pain went – after all those years of agony and pain killer injections. I get all the same bloat as people describe and after eating I go really hot and on fire, which is odd, for about 20 mins. I nibble lunch over a few hours and I can’t drink no more than a few mouthfuls of anything in one go. I feel totally full up on half a glass of water when I am at my most thirstiest. Hydration for me is just sipping all the time. I think it is all down to muscle control over sphincters and stomach emptying etc. I also have no bowel control and basically have to use laxatives all the time which means uncontrolled dashes to the loo alas. My specialist said it’s a combo of loss of muscle strength and probably a slow and unresponsive bowel in general. They could do tests but he says they are too risky and the outcome for that confirmed diagnosis about the nerves and muscle activity would not alter the treatment of laxatives.

    My neuro keeps saying my type doesn’t effect smooth muscle and that people with very weak muscles can still go with good diet but my gastro says weakened striated muscle around the abdomen can cause people to be unable to go and diet changes won’t help – so neither of them agree !! I’m sticking with what I feel it is – my scoliosis and my abdomen muscle weakness theory.

    Trouble is, if I was admitted to hospital I don’t think they would understand the fine balance between what I have to do with balancing the right type of food v. the right amount of laxative as doses vary all the time, the drinking and bloating changing as many times as the weather and to the uneducated they would think I had IBS.

    However, I do feel hungry most times and my weight loss has stopped at 53kg. My waist is still the same but just far shifted because of scoliosis which makes some clothes feel tight but that is because of the unusual tugs my body makes on them around the waist.

    criptic
    Participant
    Posts: 307
    Joined: 15/03/2011
    #77148
    Re: Weird Symptom

    @criptic wrote:

    Something linked to the MD gene [keeping it simple] itself e.g. particular muscle weakness targeting those of the digestive system.
    c) Part of another medical condition where typical symptoms are hidden or heightened by the fact someone has MD.
    Either way, just as we see a neurologist, should we not also be seeing gastroenterologists routinely?

    …………after eating I go really hot and on fire, which is odd, for about 20 mins. I nibble lunch over a few hours and I can’t drink no more than a few mouthfuls of anything in one go. I feel totally full up on half a glass of water when I am at my most thirstiest. Hydration for me is just sipping all the time.

    I think it is all down to muscle control over sphincters and stomach emptying etc.

    a combo of loss of muscle strength and probably a slow and unresponsive bowel in general.

    .

    So much sense here. Right on the point.
    I wish criptic was my specialist.

    Total agreement with points on sphincters and stomach emptying.

    Diet and drink problem identical, but can never get across totality
    of situation to the one specialist in front of me at any one time.
    @criptic wrote:

    “Food is aided through not only by internal muscles but abdominal muscles, diaphragm and other muscles and when the body is moved about during activity

    Just copied, the above quote from “weakened bowel muscles” thread. Again
    so, on the point. Why is it not obvious to some or most specialists or
    doctors that there must links between our different body systems
    and their funtions.
    We will get there though.
    Thanks so much the input. Likewise to catatude and others, together
    we are advancing our knowledge.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #77149
    Re: Weird Symptom

    @taungfox wrote:

    Diet and drink problem identical, but can never get across totality
    of situation to the one specialist in front of me at any one time.

    Agree, as the concept goes, we are experts at understanding our own bodies and then in a similar way, other people with similar conditions. We see the whole picture – but as you say what we really want is more collaborative, informed working between medical professionals of the varying types. I am quite sure that my 5 key medical professionals in 5 different places do not know what the other is thinking or treating me for.

    It reminds me of that story of a group of blind men who comes across a new animal for the first time. It was an elephant and each touches and examines a part of the animal coming to a completely different conclusion about what it might be. It is not until they chat together that they realise all the strange parts make up one big animal which they now fully understand and can recognise from it’s parts.

    Our specialists are not seeing the elephant lol.

    criptic
    Participant
    Posts: 307
    Joined: 15/03/2011
    #181024
    Reply To: Weird Symptom

    Thankyou so much All of you hi I’m Eva have MD And AS I used too naturally be 6st.7lb-7st I’m only 5ft and was a dancer b4 this really took a good. I am told my waist is there,and stomach looks so big apparently? Due to a hiatus hernia and a different hernia a 4st+ hernia I look full term pregnant? I have been promised this,that nothing ever happens its almost like you are complex accept it. But im STILL ME 💙🍬⚽️not a Tory heart Everton 1😉👍🏼 I have finally at long last got out of the pardon how i describe it💩hole,into a beautiful bungalow that ticks every box, I have spoken to social services about I know I’m entitled to housing benefit, but they only deal with,an assessment, trying to get through to housing benefit is 🙈 I don’t know if you do it online, but I’m crap with all that, I have an occupational therapist.physios,a bed and bath lift.Who couldn’t treat me in my last place as is wasn’t fit for any1 disabled or not,I found this bungalow I was just about to give up searching as,I found this private Landladys by an error,and she chose me? I am worried sick about getting keys suddenly, not being able to speak to a human being about housing benefit & Council tax? Everything all of you are saying is spot on Thankyou so much love to you all Eva Liverpool Xxx

    Bunky 9
    Participant
    Posts: 0
    Joined: 12/09/2019
    #181147
    Reply To: Weird Symptom

    Hi Eva and welcome to forum

    Lots of councils have housing benefits and council tax reduction forms online. Your local Citizens advice can help completing them.

    https://liverpool.gov.uk/benefits/housing-benefits/housing-benefit/

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
Viewing 13 posts - 21 through 33 (of 33 total)

You must be logged in to reply to this topic.

Keep in touch