Advice appreciated

[capabilitybrown]

Hello, I have just found this forum and I am hoping for some advice based on all the experience out there. Apologies for the lengthy post....

My husband, who is 45, fit and well and, by the way not a worrier about health issues, has had mild swallowing problems for just about a year and which have got a little worse in the past 3 weeks or so - some food will stick at most meals (with occasional choking) but if he takes smaller bites, avoids really dry foods or tough meats, does multiple swallows and has a glass of water he is fine.

He was referred by a GP (family doctor, but not our own who was away- and it was a phone consultation) to a gastroentorologist at first (about 2 months ago) who did an endoscopy and gave the all clear but suggested a barium swallow.

This showed some problem at the beginning of the swallow so he was sent to an eminent radiologist and speech therapy team for a videofluoroscopy. They said that they were very suspicious that it was early MND and a neurology review was recommended.

So he went back to the gastro where he was told this news (don't know who was more shocked, the dr or us!) who then sent him to a mutual acquaintance who is a neurologist as he wasn't familiar with any others (this neurologist is a brain cancer specialist).

The neuro really didnt seem to interested in the whole thing and after taking a good time to follow anything up discovered that the video of the first swallow had not actually saved on the recording machine - so after reviewing my husband and only finding brisk reflexes and a 'slightly active left side of tongue' this neuro ordered another swallow at his hospital plus a brain stem MRI, blood tests and an EMG to rule out myasthenia gravis. (these were all negative). This swallow too showed similar findings (weak base of tonge movement, reduced laryngeal elevation, residue in the valleculae) but now with some penetration of fluids into the laryngeal vestibule (of which my husband is unaware). in the past month he has also mentioned that he is getting saliva bubbling through his top teeth while talking. (Also, but perhaps unrelated he has been waking with numb hands for around 3 months).

After waiting for a couple of weeks for the neuro to get back to us we finally got hold of our family doctor who hadnt been involved yet and she said that he should never have been sent to this neuro for various reasons.

She sent him to an experienced ENT dr to rule out any nasties in that area, which he did, and he apparently rang the GP straight after the consultation and reviewing all the results to say that he was sure MND was the problem.

The GP has been great - we thought something was perhaps very wrong when she gave us her mobile phone number to use at any time (unusual in the UK).

They have said that he can either go straight to an MND specialist or if we can bear a longer wait, to a very bright neuro who will look at this from all angles first. We have chosen to do this first in case there is something genetic that has been missed and could affect our children.

Apparently the first EMG was also not good enough as the areas around the mouth and neck weren't tested, so he will have to repeat this unpleasant test.

Meanwhile the GP has spoken to my husband about making a will, life insurance and basically making some plans.
By the way I trained as a speech therapist and I am a medical doctor but this is all out of my league...
Any thoughts would be appreciated- he doesnt see the neuro till mid April so we are in limbo till then.
Thanks

 

[seaside]

Here is my advice. When telling a fantastic tale avoid the impulse to add just one more thing. It ruined your credibility.

 

[HelenL]

I can't really comment on all what you and hubby have been going through, as my onset was in my legs... perhaps someone with a bulbar onset could help you out a bit. But I do know that typically bulbar issues are not in swallowing chewed food, but more in swallowing water, thin liquids, etc., that's why many PALS have to have thickeners added to the liquid.

Good luck in getting answers to your questions, until your appt in April, try to keep your sanity by just going on with your life.

 

[capabilitybrown]

Is there not a moderator on the forum who can remove rude or nasty comments? It is both unpleasant and unhelpful, but I'm afraid you have won because help was what I was looking for surprisingly, and I'll stay away.

 

[Al]

I don't see any real need to remove the comments. He's just making the observation that possibly someone is trying to pull some ones leg. I am sure there are others who will give you answers or opinions that may be more to your liking so there's no need to leave.

AL

 

[trfogey]

Don't know what your husband has, but swallowing solid food is one of the later symptoms in bulbar onset. Bulbar onset patients typically start with slurred speech and problems moving food around in their mouths with their tongues. Obviously, you -- being an MD and trained in speech therapy -- would have noticed that, so if this is some type of MND, it's very atypical. Even more atypical is losing the ability to swallow solids before losing the ability to swallow liquids. Most of our "bulbarians" report serious choking incidents with liquids -- even their own saliva very early on.

It's a good thing that you only have to wait a couple of weeks to see the MND specialist. It's also a good thing that the EMG of his limbs was clean.

Good luck to you both.

 

[Anja]

I am very sorry you are going through this and i hope the mnd specialist will do a good exam so you know it is als or something else. It is hard to wait and asks a lot of patience. Meanwhile stay strong, there is still a good chance this is not ALS so don't lose hope. I hope for the both of you it will be something else. Take care wishing you both good luck!

Anja

 

[old dog]

Although my earliest symptom (that I was aware of) was stiffness of the right leg, my early swallowing problems were very similar to those you describe. My first barium swallow test showed no problem at all, even though I was having a problem with slurred speech when fatigued. The second swallow test, about a year later, still showed no major problem--just slowness at the beginning of the swallowing process. I now am unable to speak clearly at any time but am still able to eat whatever I want if I take my time and keep liquid (milk, water or coffee) within reach. In about the last three months, my saliva glands have become overactive resulting in spitting, drooling, and choking--disgusting! MND seems to affect everyone differently. In my case, areas of my body that either have been injured or where I have had some previous problem seem to be the most impaired.