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Posted 7/3/2007 12:17 PM (GMT 0)
Hi guys. Another bizarre question, but theoretically, could it be possible to experience the MS hug around the throat region or is it limited to the torso? I have been reading up on this phenomenon and wondered if it could explain one of my more annoying symptoms of "strangulation". Does anyone have any feedback/ideas/similarities of symptoms?
Kindest regards,
Annie
Posted 7/3/2007 4:16 PM (GMT 0)

Hi Annie,

 

I’m not sure about the ms hug around the neck, so I will leave that for more experienced people to answer. However, I was wondering if you have ever been tested for esophageal spasms? This condition is common with acid reflux, and is also apparently sometimes misdiagnosed as reflux. As I recall you have problems with reflux?

 

I went through a period of about a week with a really bad migraine, and at the same time I felt like there was something stuck in my throat that I couldn’t swallow, and that someone was strangling me. When I went to the doctor for the migraine and described my strangling sensation, he said that it sounded like I was having esophageal spasms. Luckily, they did go away for me after my migraine was controlled, so I didn’t require testing or treatment. Anyway, I don’t know if that’s what’s going on with you, but I just wanted to bring up my experience due to the similar “strangling” feeling. Below is some info on this condition:

 

http://www.mayoclinic.com/health/esophageal-spasms/DS00763/DSECTION=1

 

Hope you find some relief really soon!

Sunny

Posted 7/4/2007 5:14 AM (GMT 0)
Thanks Sunny, read the link on esophageal spasms and it certainly could account for what is happening to me. No doctors have ever mentioned this condition though, and I find it irritating that I am personally searching for answers to what is happening to me whilst paying big bucks to said professionals. Mind you, we all seem to be in the same position don't we?
Thanks for your response but am still interested in the MS hug angle.
Annie
Posted 7/4/2007 7:18 AM (GMT 0)
Hi Annie,

not any help I don't think....but just wanted to say that I understand your frustration!

I don't get the strangulation feeling, but do have the 'lump in the throat' feeling. The strangulation you talk about must be really horrendous.

Good luck with finding some answers.

KAS
Posted 7/5/2007 12:57 AM (GMT 0)

 Hi All

   For you that are having problems with esophageal spasms you may try a speech therapist or a  speech language pathologist specially trained in problems for MS patients. It has done wonders for me. It has helped me with swallowing and the lumps in the throat (which may also be a symptom associated with clinical depression which many of us deal with on a daily basis). I know that feeling of strangulation and tightness was driving me crazy and causing that "MS voice" that many of us are so prone to. Blah!!!  sad  

  Good night all and I hope the problems resolve sooner than later.   yeah    

  By the way... Happy 4th of July for all my American friends here at Healing Well!! tongue  

  Dale

Posted 7/5/2007 12:57 PM (GMT 0)
Thanks for your responses Kas and Dale.
MS voice? What is it like? Are esophageal spasms a symptom of MS? This problem really is the bane of my existance. As a teacher I use my voice constantly and I have noticed that my voice is weaker with a slightly husky quality which was not previously present. I strain to speak and singing is just not possible (my family would say "thank God"). Please any feedback would be appreciated. I have thoroughly searched the internet regarding this problem and have only found links to GERD (reflux) and no link to MS.
Regards
Annie
Posted 7/8/2007 10:16 PM (GMT 0)
Hi Annie,
Sorry I have not gotten back to sooner than this about esophageal spasms in MS. They often can appear to be associated with ms but can the result of other medical problems as well, but as I am not a doctor, I would not even try to espound on other causes. I will tell you that speech therapy has somewhat helped my esophageal spasms, choking and speech difficulties. Try any of the Google sites, (especiallly those not trying to push drugs or their business sites), that deal with dysarthria in MS. Also sites on speech aphasia in ms may be helpful. The ms encyclopedia in these related subjects may also be helpful. Speaking at certain levels or for prolonged times are also a stress on the throat and larynx. This would definitely affect many in the teaching profession as voice projection is an integral part of the job. A person with dysarthria may experience any or all of the following symptoms according to the multiple sclerosis encyclopedia :

* Slurred Speech
* Speaking softly, barely audible
* slow rate of speech
* rapid rate of mumbling speech
* limited tongue, lip, and jaw movement
* abnormal intonation
* hoarseness
* breathiness
* drooling or poor control of saliva
* chewing or swallowing difficulty
The main course of treatment is likely to be therapy to try to improve the speech quality, possibly involving a speech-language pathologist. Hope this is helpful to you. I also find this helps with the spasms. Not everyone has these problems as there appears to be a correlation between the location of lesions and dysarthria, speech aphasia and esophageal spasms. Good Luck...PS...My family is also relieved that my singing is somewhat limited now...LOL!! I have to take my laughs when I can!! :) Dale
Posted 7/9/2007 11:54 AM (GMT 0)
Thanks Dale for taking the time to search for such indepth information. You are a gem!! i seem to have several of the described symptoms. I suppose it is just a matter of sitting tight until my neuro visit comes up. Our medical system is not as proficient as it used to be (we are in the midst of a "medical crisis" in Queensland, Australia) but eventually I will be seen. Thanks again for your care and support.
Annie
Posted 7/9/2007 9:08 PM (GMT 0)
Hi Annie,

I didn't realise that you were in Australia. I'm in New Zealand....so we're practically neighbours! I think from what I've heard, that your medical system is pretty similar to ours....very different from the others on this forum in the States and UK.

KAS
Posted 7/10/2007 10:17 AM (GMT 0)
You people from Down Under will have to tell me about your health care system. In Canada, ours is going to hell in a hand basket...excuse my bad language but at one time we used to have such a good system...now one is lucky if one can get a family physician. It seems to be that way everywhere. Medicare has been used and abused and now unless one has the dollars for private medicare forget it....of course it depends what area of the country one is living in and Canada is a large country area wise anyhoo. Forget doctor shopping as it is almost impossible to get one as a family physian. Everytime one has to go to a specialist one has to get referred again by your family doctor. Very frustrating and if one has a chronic illness it is not uncommon to be dropped by a doctor as patients like us take up too much time. I am lucky as I have a great family doctor and go to the ms clinic in Halifax. What is happening in your part of the world? Take care...Dale :)
Posted 7/10/2007 12:43 PM (GMT 0)
Gday Kas and Dale and all others!
Here in the land of Oz! the medical system is suffering. The public system is unsatisfactory in that doctors are few, waiting lists are huge, there is a cronic shortage of hospital beds available, elective surgery is nearly nonexistant, costs to see doctors are exhorbitant and often the doctors are foreigners who have difficulty with the language and customs of the regions. The state in which I live has recently had two major scandals involving overseas doctors - one who has fled the country accused of "murdering and maiming" dozens of patients (he was under qualified and could not get a job in the USA or England but our government hired him as a Senior Surgeon!!!), and other foreign doctors who in the last week are accused of being part of the terrorrist network involved in the recent Glasgow airport incident. These are just a few of our many infrastructure problems here at the moment - we are also suffering the worst drought ever and many blame the government for not acting earlier as there were prominent scientists forwarning of the dwindling dam levels. Nothing was done to avert the crisis. People are cranky over many issues. Specialists (ie- the neuro) can take months to see. I have been classified Urgent Level 2 and I have been told it may take 3 months to see the doctor. It has already been 10 weeks since my referal and I still don't even have an appointment time/date. We recently heard that at a close by hospital, a friend who was also Urgent Level 2 took 1 year to see a Urologist! I can choose to pay privately and see this man but the wait would still have been 3 months or so. I am also concerned at the cost of MRI's. Privately they cost many hundreds. They are not as expensive done in a public hospital. So I will wait patiently. In fact, I feel very well at the moment which is an interesting way to feel. It really contrasts with how I was when I was referred to the neuro. Being tingley/burning/numb/L'Hermittes free now simply confirms that something really was wrong before. I still have leg and arm fatigue and my throat is always constricted. The beauty of this board is that I have learnt so much about MS that I may previously have thought "Oh, I'm better. It was just an abberation. I won't keep that neuro appointment." Now I will go as i think it still may be MS and I am in a remission.
I really enjoy your knowledge, thoughts and companionship, despite the kilometres between as all.
Earth really is a global village now isn't it?
Annie
Posted 7/24/2007 12:11 AM (GMT 0)

Ok here is one for the books.  I have been in and out of the hospital emergency room twice now for chest pain, tightness in my chest, pain in my back so bad I was thinking I was having a heart attack, my throat was tight.  After several EKG's, blood tests, chest exrays, thumping and all the questions, they turned up nothing.  I have had a nucleur stress test, a MIBI I believe they call it and found minor heart wall changes and am now scheduled for a cardiac ultrasound to see if that turns up anything. 

Today I spoke to my neurologist and mentioned to her this MS hug and she had no idea what I was talking about.  She has been practicing for over 10 years and NOT heard about it.  I was in shock when I tried to explain the girdling thing to her she got snippy with me and it was like I was coming from mars or something.  She talked to me like I was so stupid and was faking the whole thing to get attention.  I cried as I am in so much pain and have been since April and can't find out what is wrong with me.  Last night at the emergency room the doctor mentioned the possibility of esophogeal spasms and I will talk to my doctor on July 31 about that but I live in Canada and as someone wrote earlier we have to be referred to specialists everytime and so I will have to wait again.  So I have a few Demerol pills to tide me over for a few days until then.  But it helps to know that I am not crazy here and that someone else is having the same symptoms and it can be MS related.  I thought I must be losing my mind and imagining this pain as I have been back and forth to so many different doctors since April and nothing is found.  Why won't they listen and understand?  It is so frustrating when the doctor or neurologist doesn't believe you.

Thanks for listening

Karen

Posted 7/24/2007 11:18 AM (GMT 0)
Sorry you have had a bad time of it Karen. Are you have anything that would stress your system. Have you been dxed with MS as you do not say in your post. Listening is half the battle. Are you in an area where there is an MS clinic/or the neurologists in the area are trained in the area of MS and therefor that is their interest. You need to try to get into that kind of specialist even if it takes a while. Also try the MS Society in your area. They may be able to help and you don't have to be dxed to talk to them or go to one of their meetings. Don't think you are losing your mind. My feelings about doctors are (unless you get the good and compassionate and knowledgable ones) they can be as arrogant as hell. The emphasis being on getting one that is compassionate and knowledgable !!!! I know that in our overworked medical system that can be a challenge. Anyone in any country whether or not they have a private or universal system will tell you it takes the right doctor to care enough to find out what is going on with your body rather than fob you. Please read the thread about whether women are treated well in the the medical system. It is a recent thread started by Marie Claire. Good luck Karen and don't give up...it took years for someone to see that I really wasn't imaginating it all...not until I was in the hospital with total paralysis on my right side. By then anyone can diagnose you as having someting wrong and it is not all in your head and you are not just neurotic. Having said that neurogical diseases can be difficult to pin down but do not give up. We need more doctors and we especially need more nurses and nurse practioners. I am really cranky because of the high humidity so please excuse my rant. the people at this site are amazingly compassionate and knowlegdable. Keep us posted Karen. Dale
Posted 7/24/2007 1:30 PM (GMT 0)

Hi, Dale, yes I was diagnosed in 1999 after a nine year battle of trying to get the doctors to believe that something was wrong.  Finally after 2 MRI, one in February of 1999 and one in October of 1999, both in Winnipeg, I was called in on a Saturday morning in December and told that I had MS.  That was it.  Thank you Maam. 

Then I moved here to New Brunswick in 2000 and was so fatigued and was basically told that I couldn't continue to work as my legs were giving out and having terrible spasms, seizures.  Some other not so nice symptoms as well.  All the usual fun stuff of MS.  I was seeing a neurologist here but I can't remember his name right now but he left to go to Halifax to the MS Clinic there and then the new neurologist came here.  She is really, what I thought was a good doctor, but the last few times I have needed her, I have found her to be very dismissive and short with me.  Almost as though I am faking the symptoms.  Like I said yesterday, she has no idea about the MS hug, like I made up the term and yet I go on line and find all kinds of info on it including the term on the MS Canada web site itself, so it gets me wondering about her capabilities.

And no, we don't have an MS clinic near here.  The nearest one is in Halifax and I can't afford to go there all the time. That is a 4 hour drive and I would have to be referred there and I doubt she would do that.  I just don't know what else to do as there are only 2 neuros in Fredericton that I know of and they both work out of the same very small office.  I guess I just have to grin and bear it.  Just go to her as little as possible and put up with the symptoms and handle them as I see fit.  It's a shame but that is our health care that the rich get the best care and the ones that can't afford to fly to the best care have to accept whatever they can get.  Oh, well.

Karen

Posted 7/24/2007 10:27 PM (GMT 0)
Hi Karen...I am in Saint John NB and wondering if the neuro guy you had was Sandy (Alexander)Macdougall. He was my doctor before he went to Halifax. I really missed him but the clinic I go to in Halifax-Dartmouth has him on staff even though I now see Dr McKelvey in the same clinic. I love them both...they are great and know their stuff when it comes to MS and they are wonderful listeners and don't make one feel like they are stupid or neurotic. Dr. McKelvey was originally practicing as a GP in Hampton until he went on to neurology and then went to Fredericton until he left for Halifax-Dartmouth, but he was a Saint John boy born and bred. I gave up on the neuros in Saint John as their field of expertise is not in MS. Hope we can touch base again.

I was diagnosed in 1997 and have secondary progressive. Wish you could get to the MS clinic in Halifax because once you do they will set you up with an MS nurse you can call anytime you need some advice or whatever the reason. My nurse is Mark Kehoe and he is great. Don't give up and again welcome to the HW board....Dale

Posted 7/24/2007 11:09 PM (GMT 0)

Hi, Dale, yes, the neuro I had before this one was Dr. McKelvey.  He was fantastic and I hated to see him go to Halifax but I understood why.  But he really knows his stuff and we need him where he can do the most good.  How did you get referred to the clinic etc?  How did you go about it?  Maybe I can wangle something?  It does seem like MS isn't my Dr.'s specialty. 

I just live in Burton, NB, just outside of Oromocto.  Not too far from you actually.  Boy I sure notice a difference in the medical system from here to Winnipeg.  I was seen by 2 different neuros in Winnipeg and one was at the MS clinic and you can really tell the difference between them.  When you have a symptom that isn't so common or textbook MS and the neuro isn't used to it, it is like, NO that is not MS, that is something else.  You are dismissed right away and yet all the reading I am doing says there are so many people that are having the same symptoms.

Are you on any of the therapies?  I am not on any of them.  I was on Betaseron for 7 months and got quite ill on it and then Copaxone for 2 1/2 years and started having awful side effects from it also so we (neuro and me) decided not to go on anything else.  So I am just on symptom relief at the moment.

Please keep in touch.  And thanks for your help.

Karen

Posted 7/25/2007 12:44 AM (GMT 0)
Hi Karen,
No, I am not on any drug modifying therapy and don't intend to even try them. I have enough problems without dealing with their side affects. I have no problem with those that have opted for that course but I will not try them myself.
on another note I have a sister that lives in Geary...sorry French Lake... I better get it right or she will come gunning for me. I used to be in the land registry office in Burton quite often. Whats the old saying about 6 degrees of separation?
Dr McKelvey hooked me up with the MS clinic when I went to see him in January. He told me I could contact them anytime without a further referral. Dr McKelvey also supported me soundly in my decision to not go on therapy. (I know I need psychiatric therapy but thats a whole other story...lol...sorry just my warped sense of humour). I believe that the symptoms are so variable from person to person that one can't rightly say what or what isn't a symptom for MS except the general symptoms. Having said that, I believe having a doctor that you can talk with is of paramount importance. For the most part I see my GP about 4 times a years. She is great and also supports me in my decision to not go on therapy. She is quite knowledgable and she was the one that got me into Dr. McKelvey on my daughter's advice (who is a emergency room nurse in the Infirmary in Halifax.) So I get to see my doctor and my daughter at the same time. As a matter of fact she went in with me when I saw Dr McKelvey to take notes as there is so much information that one can't always take it all in. Keep in touch and hope you are feeling better. Spasms can be very painful and when they are in your throat area they can be very scary. Take care and hope all this humidity is not getting to you. Dale
Posted 7/25/2007 1:55 PM (GMT 0)

Now that is funny.  My sister also lives in Geary.  Just down from the Race track actually.  And I live on the main road of Burton about 7 kms from the bridge.  Those people in Geary really do like to differentiate the areas between French Lake and Geary and all the other little areas but to me it is all Geary, ha ha.  I grew up on the Waterville Road in that area so to me it has always been Geary.

No, the humidity so far is not getting to me, the air conditioner is doing its job so far.  I don't go outside to often when it is hot.  I love being warm as I mind the cold so much so so far not too bad.

I agree with you about the disease modifying drugs, I don't like them either, I was uneducated about them when I first went on them and was scared.  Once I started researching things it was like Holy crap, what am I doing to myself.  And then the side effects started happening and I paniced and that was it.  Now after the copaxone I have big gouges in my upper thighes that are called lipoatrophy from the breakdown of the fat in my legs that the injections have caused that will never come back.  So wearing shorts is horrible.  Its like a really back case of cottage cheese thighs.  Really pretty.  I found out that Betaseron is made with the same thing as Ecoli bacteria, so that is really nice.  No wonder I had the flu for the whole seven months.

I will just treat the symptoms I have with as little medication as I can handle and that is it.  I am being seen at the Stan Cassidy Centre here in Fredericton as well so that is a good thing too.  I see a doctor there as well so maybe with his help and my GP every thing will be fine.  I don't see my neuro until December so I guess I am not doing too bad all told.  Take care and stay cool.  Keep in touch

Karen

Posted 6/9/2014 5:33 PM (GMT 0)
Hi Everyone,

I'm so glad I have found this sight.  I was recently diagnosed with MS and the bizarre symptoms are making me crazy.  I too have this muscle tightness feeling around my neck and the feeling of something caught in my throat.  I have managed to convince myself that there is nothing caught in my throat, simply by the symptoms coming and going.  The people around me can't begin to understand these bizarre sensations.

Posted 6/10/2014 1:33 PM (GMT 0)
Hi emmasmom,

Welcome to the board. You've posted on a very old (7 years) thread. I'd like to invite you to start your own. Introduce yourself and let is get to know you!

I've heard it said many times, "No one gets MS until they get MS." It is a frustrating disease. They THINK they get it! "Oh had that numbness in my foot for a week........oh everyone gets tired..........I forget words too!"

Are you on any disease modifying meds?
Posted 6/10/2014 1:55 PM (GMT 0)
Thank you Gretchen,

I realized after I posted that the thread was quite old.

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