guillain barre or als?

[wspringer]

I was wondering if I could get some feedback on my mother's situation. We are very confused as to whether what she has is guillain barre, ALS, or something else.

Back in February she was absolutely healthy and fine; no health problems whatsoever (she is 64 years old). Towards the end of February she had a bad case of bronchitis for which she was given penicillin. She has had a previous allergic reaction to penicillin which the doctors were apparently unaware of.

Anyway, she did get over her bronchitis and did not seem to suffer any immediate ill effects from the penicillin. However, in March (about 3 weeks post her bout with the bronchitis) she started having slurred speech, her throat and tongue muscles started becoming paralyzed, and she started having extremely excessive saliva, such that she had to carry paper towels under her mouth constantly.

Now here in August, she has not had any weakening of any of her extremities, it only seems to be her neck muscles and mouth. She says that her arms are sometimes feeling weak, but I wonder if that is more because she is becoming quite malnourished. She cannot eat solids hardly and can barely drink water. The doctors don't have her on tube feeding yet, but are trying to get Ensure's and other liquid nutrition in her.

Here is our frustration though. She had a thorough work up with a neurologist in Seattle who did a spinal tap and ran her through just about every test imaginable. The neurologist felt that she had a variation of Guillian Barre. My father is extremely frightened that she has ALS, however, and had her go to a second doctor, an ALS specialist, and he didn't run any tests, just looked over her charts for 10 minutes and told her that, yes, she does have ALS because this is how it can present and she looks like she probably has a fast-moving form of it.

So, now she and my father are terrified that she has ALS. I don't know what to think. She has stayed pretty stable from mid March to now in that her symptoms are all in her throat and mouth and so far just affect her speaking, eating, and chewing. The only difference actually is that now she does not seem to be drooling quite as much, down to only using a paper towel to dab excess saliva instead of needing to hold something under her at all times. She has been gardening, moving about, walking just fine except for the mild weakness in her arms that I mentioned.

Sorry this is so long, but could any of you give me some thoughts as to whether or not this sounds like ALS?

Thanks in advance...

 

[olly]

hi wspringer.
i am sorry for what your mum is going through,i know it must be so hard for you all to deal with.
no one can tell you for sure here on the forum if its either condition.
i have to say with just bulbar symptoms to me it does not sound like gullian barres.
i think you need a third opinion from a good als specialist,i am in the uk but many in the usa talk about mayo or hopkins? as the best places to go.
i really hope they find some other cause than als.

 

[laurel]

Hi Wspringer,

It does sound like your mother could use a third opinion. That second opinion doesn't sound adequate in the least. With Guillain-Barre, this has been described "The hallmark of this polyneuritis is ascending muscle weakness that typically starts in the legs and extends to the arms and face within 24 to 72 hours. Facial diplegia and dysphagia set the stage for scant to copious drooling, which is accompanied by dysarthria, nasal voice tone, and a diminished or absent corneal reflex. Other signs and symptoms include paresthesia, signs of respiratory distress, and signs of sympathetic dysfunction, such as orthostatic hypotension, loss of bowel and bladder control, diaphoresis, and tachycardia." So the dyshagia and drooling fit. But also some of those symptoms occur with Myasthenia Gravis as well. It sure seems to be some disorder of neuromuscular transmission but which one is the question? It could be GBS, MG, or ALS but she needs another good second opinion that would include blood work testing for MG, EMG, nerve conduction testing, lumbar puncture. How about contacting someone at the ALS Association locally and get a name of a good neurologist specializing in neuromuscular disorders? Good luck.
Laurel

 

[wspringer]

Thank you Caroline and Laurel for your thoughts.

I don't know if she can be talked into getting a 3rd opinion; she was pretty disgusted with the last doctor's bluntness and "no hope" message. (He is supposedly a quite well-thought of ALS specialist in this area). She was no big fan of doctors to begin with and her take on it now is to go home and if it gets worse so be it and if she improves, better yet.

So, I don't really know what to tell her to do since I know that if she does have Guillian Barre, ALS, or MG, none of these are really treatable in that they either get better on their own, or if it is ALS there are no ways to truly treat it. In other words, would it be harmful for her to not seek further opinions since these diseases will do what they do regardless?

I do find it unusual that her symptoms came on so suddenly, especially after her bronchitis. I always understood ALS to start off rather slowly. Then again this is all very new to me and I'm just starting to learn what it's all about so I'm not quite sure how much I should push her...

 

[crystalkk]

Guillian Barre and MG are treatable. I did reply to your thread but must have gotten lost. Do you know how here reflexes are?
What were the results of her EMG?

 

[homerunbetty]

I am so sorry for what you are going through! Your family are in my prayers.

My maternal great-grandmother was diagnosed with ALS many years ago. My mother was diagnosed with "either" Guillain Barre or Transverse Myelitis; however, after reading more on this forum I am beginning to wonder if she had ALS.

I know how terrifying your family must feel right now. We have been there. Again, you are in my prayers.