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Long Haul Is Frustrating.
Hello everyone, I'm new here. I've been reading your forum for a long time now and am more than impressed with what you guys have done/do or contribute to all members. I know you will have heard our story many times and I apologize if it sounds repetitive. I also know you can't diagnose my husband on line but I'm just wanting to share it among people who understand. I'll try to be as brief as I can :)
My husband is 49 years old and isn't very good at the moment. We believe this has been coming for years but it was only in June of this year that things deteriorated very rapidly. He was admitted into hospital on the 15th June and after a week he was sent home with a diagnosis of Guillain-Barre and told it would go away within 6 weeks. He had an MRI on his brain and spine, Lumbar Puncture, ECT test and many many blood tests (no urine tests at all) before he was allowed to come home. About 3 weeks later, he suddenly couldn't breathe and feared a heart attack or respiratory problem so was re-admitted for tests (even though it was the tight belt feeling that had got worse, we had to make sure). He was in hospital over 2 weeks this time and had every test going apart from simple urine tests (as odd as that seems again). He had another MRI on neck and spine, CT scan, even more blood tests, Physio, scans to check blood flows in arteries, etc. Angiogram, EMG, another ECT test and others to try and find out what was wrong. Thankfully I can report he has amazing lungs and a good heart so at least that worry was removed. However he came home with no diagnosis and the limboland was upon us. All the tests were either negative or he was told it was normal for his age.
He came home but was physically getting worse by the week. I kept a diary for 2 months of daily symptoms in the hope it would help the neuro when we saw him..how wrong could I have been. We went to see the neuro about a month later and was shocked at his reaction. He refused to accept it was anything other than functional symptoms (all in hubby's head) and actually got annoyed at me for not being able to tell him anything that would confirm his diagnosis. He upset me a great deal when he tried to blame our 11 year old son's Autism for hubby's condition, words failed me and I just wanted to leave. Repeatedly in hospital my husband had told them all his symptoms, how long he'd had them and how he felt but it made no difference. We felt very despondent but knew we had to keep going. His symptoms are lengthy:
Tight belt feeling for 4 years (very uncomfortable and painful and restricts his breathing), persistent cough for 10 years, constant spasms all over his body, intense burning in both legs, swollen feet and ankles, pins and needles in hands and feet all the time, blotchy hands and red feet, heat intolerance, bowel and bladder difficulties, weak legs (knees have started to give way), stiff neck and other symptoms as well. He now can't drive a manual car and he is a driving instructor so he can't do his job. He's slowly getting worse and now walks with a stick.
Good news is we're going for a second opinion to another hospital in January as our local GP can see that this isn't something that needs a psychologist to cure it. We've had a few knocks over the months especially with the neuro but we're determined to get to the bottom of it. Any ideas on how to keep going without wanting to scream loudly? I've learned a lot from reading this forum and look forward to reading even more. Thanks for getting this far with me.
HH
My husband is 49 years old and isn't very good at the moment. We believe this has been coming for years but it was only in June of this year that things deteriorated very rapidly. He was admitted into hospital on the 15th June and after a week he was sent home with a diagnosis of Guillain-Barre and told it would go away within 6 weeks. He had an MRI on his brain and spine, Lumbar Puncture, ECT test and many many blood tests (no urine tests at all) before he was allowed to come home. About 3 weeks later, he suddenly couldn't breathe and feared a heart attack or respiratory problem so was re-admitted for tests (even though it was the tight belt feeling that had got worse, we had to make sure). He was in hospital over 2 weeks this time and had every test going apart from simple urine tests (as odd as that seems again). He had another MRI on neck and spine, CT scan, even more blood tests, Physio, scans to check blood flows in arteries, etc. Angiogram, EMG, another ECT test and others to try and find out what was wrong. Thankfully I can report he has amazing lungs and a good heart so at least that worry was removed. However he came home with no diagnosis and the limboland was upon us. All the tests were either negative or he was told it was normal for his age.
He came home but was physically getting worse by the week. I kept a diary for 2 months of daily symptoms in the hope it would help the neuro when we saw him..how wrong could I have been. We went to see the neuro about a month later and was shocked at his reaction. He refused to accept it was anything other than functional symptoms (all in hubby's head) and actually got annoyed at me for not being able to tell him anything that would confirm his diagnosis. He upset me a great deal when he tried to blame our 11 year old son's Autism for hubby's condition, words failed me and I just wanted to leave. Repeatedly in hospital my husband had told them all his symptoms, how long he'd had them and how he felt but it made no difference. We felt very despondent but knew we had to keep going. His symptoms are lengthy:
Tight belt feeling for 4 years (very uncomfortable and painful and restricts his breathing), persistent cough for 10 years, constant spasms all over his body, intense burning in both legs, swollen feet and ankles, pins and needles in hands and feet all the time, blotchy hands and red feet, heat intolerance, bowel and bladder difficulties, weak legs (knees have started to give way), stiff neck and other symptoms as well. He now can't drive a manual car and he is a driving instructor so he can't do his job. He's slowly getting worse and now walks with a stick.
Good news is we're going for a second opinion to another hospital in January as our local GP can see that this isn't something that needs a psychologist to cure it. We've had a few knocks over the months especially with the neuro but we're determined to get to the bottom of it. Any ideas on how to keep going without wanting to scream loudly? I've learned a lot from reading this forum and look forward to reading even more. Thanks for getting this far with me.
HH
To HVAC: Yes the psychiatric side of things is something I've noticed wherever someone lives. I'm sorry to hear about your own situation but glad to know that finally you got somewhere. When we went to see the neuro, we were armed with the questions and the diary but he caught us off guard within minutes of seeing him so when we saw our GP, we explained it to him and he willingly read the diary and take it from there.
We are careful what we say, as some doctors don't like a patient to be too knowledgeable but at one point our GP even he asked us what we thought it could be (which was a surprise). Obviously we don't know what it is and just told him that we're not sure what to look for. He did say that the diary reads neurologically and we think that is one reason why he's taking it further.
Many disorders have been ruled out and we're grateful for that but hubby's symptoms do lean towards ones like MS..we don't know and are just trying to help the doctors by being as vigilant and aware as we can so we can report this to them. I know that situations like this can be so difficult to diagnose, your own story proves that. And yes, it seems that when you don't fit the regular pattern, it throws the specialists off and delays any possible answers sometimes.
And no he isn't being treated for his symptoms and that is a huge concern for us. The only medication he has is called Amitryptiline. We discovered that it didn't help with his pain, etc. but it took his cough away so he's back on the tablets daily for that. He's also tried Nortryptiline and Pregabalin but neither have helped. We're very aware of how vital medication can be and how he's deteriorated over the last four months. January 2012 seems so far away at the moment and our GP doesn't know what else to try without a diagnosis but we'll keep going back to see him in the meantime as something helpful may come along. Thank you for your reply Alex.
Hi wendx..I'm sorry to hear about what has happened to you. With my husband he just coped with some of the symptoms for years because they couldn't find an answer and was glad it wasn't anything like cancer. He's a really calm person (unlike me lol) and I've said to him that his tolerance level is high but it's worn him down and it's showed especially recently. 'It's all in your head' is one of the worst things to be told and makes you feel very down. He hasn't had an EEG himself, thanks for mentioning that as it's something to ask about. My husband's waiting is nothing compared to a lot of members here and elsewhere. It's reassuring to know he's not on his own. All the best to you wendx.
We are careful what we say, as some doctors don't like a patient to be too knowledgeable but at one point our GP even he asked us what we thought it could be (which was a surprise). Obviously we don't know what it is and just told him that we're not sure what to look for. He did say that the diary reads neurologically and we think that is one reason why he's taking it further.
Many disorders have been ruled out and we're grateful for that but hubby's symptoms do lean towards ones like MS..we don't know and are just trying to help the doctors by being as vigilant and aware as we can so we can report this to them. I know that situations like this can be so difficult to diagnose, your own story proves that. And yes, it seems that when you don't fit the regular pattern, it throws the specialists off and delays any possible answers sometimes.
And no he isn't being treated for his symptoms and that is a huge concern for us. The only medication he has is called Amitryptiline. We discovered that it didn't help with his pain, etc. but it took his cough away so he's back on the tablets daily for that. He's also tried Nortryptiline and Pregabalin but neither have helped. We're very aware of how vital medication can be and how he's deteriorated over the last four months. January 2012 seems so far away at the moment and our GP doesn't know what else to try without a diagnosis but we'll keep going back to see him in the meantime as something helpful may come along. Thank you for your reply Alex.
Hi wendx..I'm sorry to hear about what has happened to you. With my husband he just coped with some of the symptoms for years because they couldn't find an answer and was glad it wasn't anything like cancer. He's a really calm person (unlike me lol) and I've said to him that his tolerance level is high but it's worn him down and it's showed especially recently. 'It's all in your head' is one of the worst things to be told and makes you feel very down. He hasn't had an EEG himself, thanks for mentioning that as it's something to ask about. My husband's waiting is nothing compared to a lot of members here and elsewhere. It's reassuring to know he's not on his own. All the best to you wendx.
Hi. I'm also new on here. I have suffered for many years with numerous symptoms. I. Have been to see lots of different doc's. I was diagnosed with fibro about 15years ago and just left to get on with i have deteriorated since i also have the feeling of a tight band aroundd the top of my stomach and chest which makes it hard to breath. I have pains in my chest both arms,legs feet. I also wake in morning with numb hands. I can hardly walk anywhere any more. I have also started to have blurred vision and often feel really weak and fatigued . Sometimes i lie awake with shooting pains in arms and chest. I have bowel prob's also. I hate seeing doc as I'm sure they think its all in my head. The neurologist said although i had abnormal eeg the brain scan normal. Some doc's say its in my head. I also live in England . Don't know where to turn. Its ruining my life. I'm always in pain and too tired to do anything with my family. Any one help.
Psychiatric label happens in the U.S. as well. They knew I had something wrong with my brain stem from the age of two and I still ended up under Psychiatric for most of my life. It took a smart GP and Psychiatrist to say there is something terribly wrong here. I have seen way over fifty Specialists and it took over 40 years.
Basically now I have go into Doctors with a big old chip on my shoulder which does not help. My Doctors tell me leave emotion out of it. Go in prepared with things written down, keep it brief, concise, just the fact, no commentary or speculation. If I do speculate I form it as a question.
I let the Doctor go first then I ask my questions I have written down.
I do not comment on other doctors. I bring there notes. Good Doctors can make up there own minds. Here Neurology is a small field and they know each other so I let them sort it out. I have neurologists read other Neurologists notes and think the other Doctors did not do a good job on the case.
There are no absolutes in Medicine. It is not like we are mechanical with schematics or a manual. Doctors are human with their own emotions and thought processes.
There are over 800 Neurological disorders and 0ver 3o non Neurological MS mimics. Diagnosing is ruling out what something is not, especially with MS. There are no tests which rule MS in or out. It is a combination of test results, neurological signs, watching over time, and the Doctors experience.
Most Neurologists even with all my tests results could not easily diagnose me, because I did not fit the usual pattern. They are not used to constant symptoms starting in infancy as being MS. Plus all the other diagnosis over the years confused it.
Are they at least treating his symptoms. That is important.
Alex
Basically now I have go into Doctors with a big old chip on my shoulder which does not help. My Doctors tell me leave emotion out of it. Go in prepared with things written down, keep it brief, concise, just the fact, no commentary or speculation. If I do speculate I form it as a question.
I let the Doctor go first then I ask my questions I have written down.
I do not comment on other doctors. I bring there notes. Good Doctors can make up there own minds. Here Neurology is a small field and they know each other so I let them sort it out. I have neurologists read other Neurologists notes and think the other Doctors did not do a good job on the case.
There are no absolutes in Medicine. It is not like we are mechanical with schematics or a manual. Doctors are human with their own emotions and thought processes.
There are over 800 Neurological disorders and 0ver 3o non Neurological MS mimics. Diagnosing is ruling out what something is not, especially with MS. There are no tests which rule MS in or out. It is a combination of test results, neurological signs, watching over time, and the Doctors experience.
Most Neurologists even with all my tests results could not easily diagnose me, because I did not fit the usual pattern. They are not used to constant symptoms starting in infancy as being MS. Plus all the other diagnosis over the years confused it.
Are they at least treating his symptoms. That is important.
Alex
Thanks for the replies everyone.
To Ojibajo: Sadly too many people are being lumped together into the psychiatric world because the specialists don't know what is wrong with them. My husband has no disturbing past or history any stress/depression that 'functional symptoms' (FS) seems to need overall. The leaflet his neuro gave him (that he thought would make us accept his diagnosis) actually moved hubby further away from a diagnosis of 'functional symptoms'. The best line that came from the neuro was when he said even though he believed it to be FS, he couldn't see the point in sending hubby to a psychotherapist because they wouldn't be able to help him..that just made what he was saying even more ridiculous.
To RedFlame: My husband had tests about four years ago to check the tight belt feeling wasn't a tumour or a cancer anywhere in the intestines, etc. They couldn't find anything bad so hubby's just lived with it all these years. Now though it's unbearable some days. We never thought of MS until recently but it fits. I have some many of your health pages and have found them a very good source of information and help..there are a few though that I haven't read yet. We've learned of a few of the mimics you mentioned, they just don't seem to fit.
One thing I've learned from this forum is that in England we don't get to change things easily and some specialists hate it when a patient wants their tests results. Our GP has the records of what tests were done but we've never been told what results are, just the 'normal' or 'it's right for your age' theory. This forum is where I've learned it should be better than that. We daren't tell our doctor how much research we've done but he knows we've looked a little for ideas on what could be wrong as he can see the situation is worse. We don't know the EMG result, again we barely got any feedback on anything. We thought that was how it was but learning up on these things shows just how shoddily we were treated.
My sister used to take people she cared for to the same neuro several years ago and without me telling her what he was like, she described him perfectly to me. We also discovered that he's a main man in the Functional Symptoms world..no wonder why he said what he did. Our son's Autism isn't a stress for us and I wish we could have recorded the appointment just so people could see how appalling it was.
I will ask about the extensive exam..the info we've had back is so vague that right now I couldn't tell you. We're not just taking things at face value now, we're trying to make sure we know everything we need to know.
To Ku: I've read your story ku and had a few jaw dropping moments while doing so. When I saw the word Prozac I thought 'here we go again..blame it on the mental side of things'. I can fully understand why you've shed the tears..it's enough to break you when you're hitting brick walls all the time and being fobbed off so easily. I love your resolve and how you're keeping going and thank you :) Good luck to you and your son too..no one should have to worry like this especially children. Limboland is a busy place, we're not alone!
To Ojibajo: Sadly too many people are being lumped together into the psychiatric world because the specialists don't know what is wrong with them. My husband has no disturbing past or history any stress/depression that 'functional symptoms' (FS) seems to need overall. The leaflet his neuro gave him (that he thought would make us accept his diagnosis) actually moved hubby further away from a diagnosis of 'functional symptoms'. The best line that came from the neuro was when he said even though he believed it to be FS, he couldn't see the point in sending hubby to a psychotherapist because they wouldn't be able to help him..that just made what he was saying even more ridiculous.
To RedFlame: My husband had tests about four years ago to check the tight belt feeling wasn't a tumour or a cancer anywhere in the intestines, etc. They couldn't find anything bad so hubby's just lived with it all these years. Now though it's unbearable some days. We never thought of MS until recently but it fits. I have some many of your health pages and have found them a very good source of information and help..there are a few though that I haven't read yet. We've learned of a few of the mimics you mentioned, they just don't seem to fit.
One thing I've learned from this forum is that in England we don't get to change things easily and some specialists hate it when a patient wants their tests results. Our GP has the records of what tests were done but we've never been told what results are, just the 'normal' or 'it's right for your age' theory. This forum is where I've learned it should be better than that. We daren't tell our doctor how much research we've done but he knows we've looked a little for ideas on what could be wrong as he can see the situation is worse. We don't know the EMG result, again we barely got any feedback on anything. We thought that was how it was but learning up on these things shows just how shoddily we were treated.
My sister used to take people she cared for to the same neuro several years ago and without me telling her what he was like, she described him perfectly to me. We also discovered that he's a main man in the Functional Symptoms world..no wonder why he said what he did. Our son's Autism isn't a stress for us and I wish we could have recorded the appointment just so people could see how appalling it was.
I will ask about the extensive exam..the info we've had back is so vague that right now I couldn't tell you. We're not just taking things at face value now, we're trying to make sure we know everything we need to know.
To Ku: I've read your story ku and had a few jaw dropping moments while doing so. When I saw the word Prozac I thought 'here we go again..blame it on the mental side of things'. I can fully understand why you've shed the tears..it's enough to break you when you're hitting brick walls all the time and being fobbed off so easily. I love your resolve and how you're keeping going and thank you :) Good luck to you and your son too..no one should have to worry like this especially children. Limboland is a busy place, we're not alone!
I am pretty new here too. Welcome! I have learned a lot and needed to be in a place where people understand and don't look at me with a blank look. My son couldn't walk, talk or urinate in January 2011 and they told us to give him Prozac! How insulting! So, I do understand the frusteration. I have shed many tears. I now tell myself everyday "I may not find out everything or anything today but maybe tomorrow". I read everything about MS in children I could find. They call it "Limboland" here and it's a perfect word. So true. It is so hard to see someone you love change so much and so fast. I think back to last year this time and most everything was fine (except the little things I think back on now). On November 22, 2010, my son changed forever. I wish you the best and encourage you to stay with this group. It really is helping me a lot. Today, I have not found out anything but I have learned from people here. Maybe tomorrow... Goodluck!
There are so many things that could be going on with your husband. The 'banding' that you speak of is a symptom of MS that we call the 'MS hug'. It goes all around your chest and can be quite painful, sometimes (rarely) some type of intervention is needed for adequate breathing.
The severe fatigue or perhaps Guillan-Barre that you speak of could be a symptom of something else too. MS often has severe fatigue and also weakness. But remember that there are many mimics of MS. There is a health page here to help you learn about, things like Lupus etc.
You talk about having all the tests. Do you know what kind of study he had with the MRI? There is a specific protocol that is done for MS, different studies and contrast. Do you know what type of study they did?
What were the results from his EMG?
As far as neuro's go, they can be absolutely horrible, so remember that when you see one. I don't know how the medical system works there, but here we are able to change until we find a good one. Blaming all of this on your son's Autism is ridiculous! Sounds like he just grabbed onto that instead of really working
Did the neuro do an extensive exam?
Red
The severe fatigue or perhaps Guillan-Barre that you speak of could be a symptom of something else too. MS often has severe fatigue and also weakness. But remember that there are many mimics of MS. There is a health page here to help you learn about, things like Lupus etc.
You talk about having all the tests. Do you know what kind of study he had with the MRI? There is a specific protocol that is done for MS, different studies and contrast. Do you know what type of study they did?
What were the results from his EMG?
As far as neuro's go, they can be absolutely horrible, so remember that when you see one. I don't know how the medical system works there, but here we are able to change until we find a good one. Blaming all of this on your son's Autism is ridiculous! Sounds like he just grabbed onto that instead of really working
Did the neuro do an extensive exam?
Red
From the sounds if things I figured that you were in England. Is that just sort of how the medical system works over there...dismiss everyone's complaints as psychiatric or is this a unique situation. Your experiences sound dreadful!
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