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Darn this MS Diagnosis

Oct 25, 2009 - 6 comments

I saw the neruomuscular doctor after the EMG/NCS last Thursday and am very disappointed with the evaluation.  They were behind schedule and I wasx the last patinet, not getting out of there until after 6 pm and hope that fact didn't have anything  to do with his hurried evaluation.

I was referred to this doctor by my pulmonologist who was concerned that there was a neuromuscular component to my breathing problems and significantly decreased lung functions over the past few years.  We also talked about how my legs would get this extreme burning pain and weakness when I climb stair, hills, or otherwise exert myself more than just the normal walking, which I still have pain but to a much lesser degree.  

So, he did a couple of tests looking for myethenia gravis and sojournes syndrome and guess what?  They were negative.  So, since they were negative and my emg was ok, borderline, but on the nomal side, then he was done.   He said he thought these symptoms caused by MS. That was the only conclusion he could come up with.  My MS neuro looked at my lung function results just 2 days earlier and was certain this wasn't caused by MS. I didn't bother to mention that to this doctor.  I did tell him tell him that I asked other MS patients if they have the sudden burning pain in their legs and no one else was having that symptoms so how could he say this was MS related.  His response was to suggest I take neurontin.  I told him I was on neurontin.  He forgot that we'd had that conversation already a week earlier.

I think this guy could have done more to try to help me, but for whatever reason he chose not to.  I hate to think that once he heard about the MS diagnosis that he stopped there and hung his hat on that.  I have no answers and throwing more drugs at the problem while not fully knowing the underlying cause to me seems unacceptable.  It is too bad this guy took the lazy way out and I feel I am the one who will pay for it in the end.

It is always hard to walk away without answers.  I know these symptoms are not due to MS and my MS neuro agrees.   I'll go back to the lung doctor and see what she wants to do to figure this out since her neuromuscular referral didn't pan out.  As far as the leg symtpoms, I guess I just have to learn to live with it like everything else.  

However, despite this experience, I am hopeful that eventually figure this out somehow some way because I am not a person to give up easliy.

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572651 tn?1530999357
by Lulu54, Oct 25, 2009
good for you to keep at this, Julie.  If you believe its not MS related, then it most probably isn't.  You're much too smart about your body to be sidelined with the easy dx of *its your MS*.   - L

648910 tn?1290663083
by saveone, Oct 25, 2009
Julie, this is one of those info things you find on the web.  This came from the National Society of MS.  It is good info and maybe something to discuss with your neuro.  I hope you get it figured out, no knowing what causes something is a b**&^h.  

Enjoy your weekend.   terry

Respiration or breathing is primarily under the control of the autonomic or “automatic” nervous system—the part of the central nervous system that controls vital functions such as heartbeat and respiration without conscious thought. It is unusual for MS to affect the autonomic nervous system, and therefore uncommon for breathing problems to occur in MS as a direct result of loss of autonomic control. If breathing problems occur suddenly, it is imperative to see the health care provider immediately or go to the emergency room since this may indicate infection or some other problem.Weakness of the ventilatory muscles can begin early in the disease

In MS, the most common cause of respiratory problems is loss of muscle strength and endurance. Just as a person can experience muscle weakness in the arms or legs, weakness can occur in the ventilatory muscles of the chest and abdomen that are involved in breathing. And like weakness in the other parts of the body, weakness of the ventilatory muscles can begin to occur early in the disease course and gradually worsen over time.

Certain medications may also contribute to respiratory problems

Some medications, such as tranquilizers, muscle relaxants, and opioid analgesics, can depress breathing. The use of these medications should be carefully monitored in anyone with a history of respiratory distress or swallowing problems.
Respiratory changes can contribute to other problems

People with weakened ventilatory muscles have to work harder to inhale and exhale. This extra effort can be quite tiring, particularly for people who already experience a significant amount of MS fatigue. Respiratory problems can also interfere with the process of speech and voice production—making it much more difficult and tiring for people to carry on a conversation or speak loudly enough to be heard. The speech/language pathologist can recommend exercises and tools to enhance speech and communication.
A baseline evaluation of respiratory function is useful

Because weakness of the ventilatory muscles can occur at any time, many MS specialists recommend a baseline evaluation at the time of diagnosis, followed by periodic evaluations (every 1-3 years) thereafter. These evaluations are most often done by a physical therapist or nurse with special training in this area. In the event that respiratory function becomes affected, a therapy program can be recommended to strengthen ventilatory muscles and enhance respiration.

559187 tn?1330782856
by Sarahsmom46, Oct 25, 2009
Thanks Laura and Terry.  I read the information you sent and it looks like there's not much that can be done for it other than monitoring.  Maybe that's why the doctor's aren't all gung-ho about it. It is what it is.  But the scary thing for me is if I were to get in a crisis and we don't know why I am having the breathing problems and that not knowing the doctors can put me in a worse situation.

For example, last June when I was in the hospital, they gave me a pain medication.  An hour later I was having shallow rapid breathing and was so weak I couldn't even pick my arm up and reach behind me for the nurse call button.  When the nurse came in to do her rounds (it was at night), Itold her I needed help. She checked my oxygen level and it was way, way too low and ther put me on oxygen.  It is things like that that scare me - the not knowing.  

I will talk to everyone about this, the lung doctor and even will put a call into my MS neuro letting him know this other neuros opinion that it was MS and see what they think.  Even if there is no real treatment for it, then at the very least there is some testing they can do to pin down if the respiratory muscles are weak and document it.    I was hoping for a quick answer and a quick cure, but sometimes there are no answers and no cures.  We just have to deal with these things.  It could always be worse I suppose.  

Thanks again you guys.

739070 tn?1338603402
by rendean, Oct 25, 2009
Dear Julie,

So sorry to hear of your disappointing appointment! I know firsthand about disappointing appointments yielding no answers or having the doc  fall back onto the "easy" dx, like my non-exsistent Sjogren's.

I hope that your pulmonologist and MS neuro can come up with a treatment plan and evaluation to at least have a starting point if indeed you do have another crisis (let's hope NOT).

No need for me to tell you to hang tough and figure this out because I know you are tough and you will see it through!

Keeping you in my thoughts,

867787 tn?1318936230
by Tammy826, Oct 25, 2009
Hi Julie! Sorry for your dissppointing Drs. visit. It becomes tiring to be treated like your on an assembly line! It would be great if these Drs. would take 2 min. of their precious time to communicate with each other! we are paying them way too much money to be treated this way. Mabey if we started treating them like any other paid employee & firing them for laziness & failure to do what we pay them good money to do they would get the hint! Hang in there & don't give up, you know your body! You will remain in my prayers!! Love ya! Sending big ((((hugs)))) your way!

            Love, Tammy

559187 tn?1330782856
by Sarahsmom46, Oct 25, 2009
Ren and Tammy, you botha are awesome friends.  Thanks, that was what I needed to hear right now.  Hugs to both of you.

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