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When it gets me (rarely) it feels like someone has caught my diaphram and is pushing it into my chest. it is painfull but does not cause any difficulty in breathing.
It is caused by a by a lesion that effects a cluster of nerves in the chest or adominal area and the then give you the feeling that everything is tight and pulling in . Some say it is more like someone is pushing out .
The lesion is located in the brain stem or top of the cervical spine but like most things in MS, it effects different parts of the body and all of us in different ways.
Mine is generally well controlled by a combination of baclofen and gabapentin but again that does not work for everyone.
I hate to say this but some neuros say it is not really a symptom of MS , well I for one disagree.
Hope this helps.
RoryView Thread

If either of you are on one of the interfuro treatments you need to discuss this with your neuro as soon as possible .
The depression associated with these therapies is serious and a change in treatment plan is usually called for.
If this is not the case for either of you, both of you still need to talk to your doctors about meds to treat thios symptom of MS.
Luckily for me I have never had top deal with this so I will not make recomendations but there are several meds available if you have not allready tried them.
RoryView Thread

One possibity is Devic's syndrome . For a long time it was diagnosed as MS and then as a Sub-set or particular type of MS.
In the last couple of years neuro's have come to see it as a seperate disease with a different course from MS .
The reason I thought of it , is that it can present as liasons on the spine with balance promblems as a symptom . Typically liasons do not present in other parts of the Central Nervous System (CNS). The other main symptom is optic neurosis or (ON).
It does not respond well to the diease modifying therapies (DMT's) that are available for MS so treatment is mostly for symptoms if the present . Like MS a patient can go long periods between flairs .
I am not a doctor and am in no way trying to diagnse you but it something for you to dicuss with your neuro at your next visit assuming it has not being ruled out all ready. If that is the case ignore this and sorry to have wasted your time.
RoryView Thread

The reaction of your family is not uncommon and the best way to change it is through education.
If a diagnosis is confirmed and you start on a disease modifying therapy (DMT) you will need to explain how the work as well as how the effect the course of the disease.
As to your employment situation, I do not know how it works in Canada but here we have the Americans with disabilities act(ADA) which would make having that conversation illegal. You should check if Canada has a similar law.
As for the Menieres disease my brother has it and it was uncontrolled until eighteen months ago when he started taking valium and (touch wood ) he has not had an event since. Of course you may be on it allready for depression but if not it may be worth a little research before your next doctors visit.
You sure have a lot going on but remember that you have to be your own best advocate as doctors often say well it's not this so, go home and try some other specialist. In which case you have to start all over again so do not let them give up until you have an answer and treatment plan that you believe is right for you.
Above all do not let anyone tell you It's all in your head or think you are doctor shopping ,this is another common reaction among if the cann't explain your symptoms.
Sorry this is so long but I hope it helps
Rory
P.S. could you break up your posts a bit as I have devoloped a promblem reading large blocks of type.View Thread

First a negative spinal tap does not rule out MS , mine was negative and I was still diagnosed.
I was also diagnosed with simple partial epilepsy last year so it is possible to have both MS and a seizure condition . I am not qualified to say you have either but I am worried by your symptoms.
Is your care been co-ordinated at one central point or are you going to various neuro's at different centers. If the latter is the case I feel that should try to get it all under one roof as the expression goes.
Preferably this would be at a teaching hospital or one neuro's office where different doctors can diagnose and then treat your conditons with a plan tailored to you.
As to this not affecting your whole life ,I can tell from one post that it is and maybe you need to make that clear to your neuro.
One other thing Dr. Lava usually check in on Friday so you may want to start a new post with his name in the subject line on wed or thurs and give him a concise explanation of whats going on with you.
Sorry so long but I hope it helps.
RoryView Thread

I was diagnosed in 2003 after MRI's and neurological exams, negative on the spinaI.
I have worked constuction all my life and at various times have been diagnosed with stenosis , scolliosis , bulged discs and other back promblems. My sister was diagnosed with MS by an ortho who she was seeing about degenerative disc disease which she definately has.
The reason I tell you all this is that you proably have both but the trick is to figure out which promblem is causing which symptom.
You will have to make sure your records are co-ordinated between both your neuor's and the have a plan to watch (treat) both your conditions.
Rory.
P.S. a pshyio or one of those specialist's who help patients adapt to limited mobility (sorry cann't think of the word) might be able to help with adjusting to the back pain. Ergonomics is the basic word for what the do, tried it myself and it helped.View Thread

One of the major side effects of all the interfurons is depression. You obviousbly feel that this is true for you . That been the case you have to talk to your neuro about other options for Disease modifying therapies (DMT's).
Copaxane is the only injectible open to you as all the other are interfurons of some sort . There is tysabri as well as some of the newer oral meds to consider as well.
Talk to your neuro and come up with a new plan that suits you as depression caused by meds is something you do not have to live with.
RoryView Thread

First I have to start this with an apology and a thank you I should have done this on veterans day so a belated thank you for your service.
Now about that service, you have previously posted that you served in Gulf War One and Desert Shield but I see no mention of Gulf War Syndrome in your posts.
If the VA have not tested for this I would assume the are either afraid of the results or just trying to cover it up .
From what I read about it one in four of those who served have some symptoms which include neurological damage to the central nervous system.
I could be completely wrong and most likely am but it occured to me and I wanted to post anyway so it may be worth checking out if you have not done so allready .
Once again thank you for your service.
Rory.View Thread

My first impression is that you need a second opinion . I am not saying you do not have MS but the way this neuro has gone about the diagnosis process make's me wonder if she has much experience with MS.
Now about Avonex I have been on it since my diagnosis ten years ago. It is not designed to treat symptoms caused by MS rather it is meant to treat MS by reducing the frequency of flares .
You talk about depression, one of the major side effects of Avonex is depression so if there is apossibillity that it is related you should talk to your doctor about changing meds.
Treatment of MS has to be seen in two seperate categrories one are the disease modifying therapies such as Avonex. The other is symptom management such as muscle relaxers for spascity, meds such as neurontin for neuropathic , anti depressents,meds for frequent urination , all of which I think you need to talk about with your doctor.
I would also talk to someone about the possibility of a seizure condition .I have simple partial epilepsy and have come round on the floor a few times with no idea how I got there .(well I figure it out)
For now see about a second opinion and let us know how you are doing ,do not worry about the rambling we all do it now and again.
RoryView Thread

RoryView Thread
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