what is this? Update - post 107/Completely Healed!

[breezy1077]

We went to his new neurologist today. This guy is much better in that he did not dismiss any of DH's symptoms as unrelated. The other 2 doctors dismissed immediately the numbness in left arm and burning sensation in head.

Anyway, he kept asking if the siezures occur just at rest or all times and he asked twice if they occur while he's walking (they do). I thought that was curious. He also asked if there was any pain in the neck area between the head and the arm that's numb (there's not) . At the end of the apt. I asked if he had any inclination about what we might be dealing with and he said DH has the symptoms of many things, but with all of them together - he doesn't fit neatly into any diagnosis.

He said more testing was needed to see if we were "dealing with something benign or sinister". (DH and I had a little laugh at the wording - sinister sounds so sinister )

He ordered another MRI, a sleep deprived EEG?, an EMG, and more bloodwork.

Ah well, I guess I'll update y'all when the tests come back. I just wish we could have come away today with at least a hint of what it might be. In the meantime, I'll consider no news as good news, but quite honestly - right now no news is just frustrating.

Thanks to everyone who "nudged" me into making DH go for more tests. And for all your concern and suggestions (I was relieved to hear the Dr. order a nerve conduction test after a few PP's suggested it - I never would have known what that was otherwise. It made me think maybe we finally have the right Dr. ) Thank you all!!!

 

[SeansMom]

Sending you postive thoughts. Sure sounds like the 2nd neuro. is much better than the 1st >

Also...a thought...does your DH drink or eat foods with Aspartame? I knew somebody who had really severe reactions similiar to what you're describing after prolonged use. Just a thought.

 

[breezy1077]

Sending you postive thoughts. Sure sounds like the 2nd neuro. is much better than the 1st >

Also...a thought...does your DH drink or eat foods with Aspartame? I knew somebody who had really severe reactions similiar to what you're describing after prolonged use. Just a thought.

He used to drink about 12 cans of diet dew - a day . He stopped drinking pop and switched to unsweetened iced tea I believe the beginning to middle of last year.

 

[dee47]

What a relief to hear you have the right Dr now! That's great!

Keeping my fingers crossed for good outcome. At least you know you'll have some answers soon. I know waiting seems like the worst part!

 

[breezy1077]

Blood tests came back fine - nothing showing there. Although I'm having dh call back and see if they tested for Huntington's. He gets to stay up all night for his sleep deprived EEG tomorrow, and the ins. co. finally approved the MRI. Just thought I'd keep y'all posted.

 

[breezy1077]

Update: EEG came back normal. EMG is scheduled for the 28th.

BTW, what are they looking for with the EMG and can anyone tell me what DH can expect. He's a bit apprehensive about this test.

Also, if all this comes back showing us nothing - what might the next step be? His choking is getting worse and so is his shortness of breath. He made a couple trips up and down the stairs today and he had to sit down for about 5 min. because he was having a hard time catching his breath.

Could this all be due to a pinched nerve? wishful thinking I know, but is it possible?

 

[dee47]

You know, whatever is going on is getting worst fast. Did you let the movement disorders guy know it's getting so much worse? If it were me, I'd almost rather be admitted to the hospital for testing at this point, get it done fast and figure out where to go from there.

Did they test for HD? (They can actually do a DNA test for the gene.) What did the MRI show?

An EMG looks at electrical conduction in the muscles. It may be done at the same time as nerve conduction studies (which your DH should have as well, BTW). Abnormal results can mean anything from a pinched nerve (highly improbable given his varied symptoms, sorry!) to ALS or MD. The test involves insertion of needles into muscles but these aren't the sharp needles you think of that are used in syringes. Theoretically, they should hurt a lot less than injections. Of course, experiences vary by the individual's threshold for pain and the technician's competence. I never had one done, so I can't say for sure how uncomfortable they really are...

Do you know what blood tests they did?

I'm keeping you in my thoughts...You're all going through a really scary time, and I feel for you. I wish I had something more to offer you. At least you're with a doc who's paying attention now.

 

[Mackey Mouse]

Hugs. I am watching this too.. Please let us know how he is doing. I hate when the tests come out with nothing and he is still having symptoms..

Keep pushing.. until all tests are back..

 

[breezy1077]

You know, whatever is going on is getting worst fast. Did you let the movement disorders guy know it's getting so much worse? If it were me, I'd almost rather be admitted to the hospital for testing at this point, get it done fast and figure out where to go from there.

Did they test for HD? (They can actually do a DNA test for the gene.) What did the MRI show?

An EMG looks at electrical conduction in the muscles. It may be done at the same time as nerve conduction studies (which your DH should have as well, BTW). Abnormal results can mean anything from a pinched nerve (highly improbable given his varied symptoms, sorry!) to ALS or MD. The test involves insertion of needles into muscles but these aren't the sharp needles you think of that are used in syringes. Theoretically, they should hurt a lot less than injections. Of course, experiences vary by the individual's threshold for pain and the technician's competence. I never had one done, so I can't say for sure how uncomfortable they really are...

Do you know what blood tests they did?

I'm keeping you in my thoughts...You're all going through a really scary time, and I feel for you. I wish I had something more to offer you. At least you're with a doc who's paying attention now.

Thanks to everyone for all your advice, help, and just being there with me through this process.

They did not test for HD, I think they were just testing for cancers again. When they took his bloodwork he didn't even do a fasting, which is probably fine just mentioned to explain why I think they only tested for cancer and other levels in blood. I've been thinking HD for awhile now. Seems to fit all the symptoms, but he has no family history (that we know of). I'm going to have DH call and make sure they test for HD too. Other than ALS, HD is next on my list of what I don't want this to be. Honestly, and for those suffering from MS - this is not meant to diminish what you're going through, at this point I'm hoping for MS. Sounds funny, but I get more scared as the tests come back normal, mainly because the more sinister stuff seems to be the most elusive to dx from the research I've done.

I'll pass on to him what to expect with the EMG. Thank you.

I'll talk to him about the hospital, but I already know what his answer will be.

Thanks again to everyone - I'll keep you posted.

 

[breezy1077]

Forgot to answer about the MRI - Normal, but they just did one of his head - should we be looking lower - like spine area? (I've been thinking spinal tumor too, benign, but growing?)

 

[dee47]

Fasting for blood tests is usually only needed for glucose and cholesterol, so no fasting doesn't mean they didn't test for things other than cancer. They just didn't test for diabetes

I would at least ask the doc why they only did a head MRI. I'm guessing all his symptoms point more to a brain problem, but it's worth asking just to make sure they didn't skip a test for insurance reasons (it's happened before...)

HD was not always recognized for what it is in past generations. Also, some patients have HD with no family history. Not that I'm trying to spread panic, but you've obviously already thought about it. Have him tested, hopefully for peace of mind. If the test is negative, you can breathe easier. If not, there are clinical trials you can enroll in.

You know, I can totally understand when you start rating diseases on a scale of "which is the lesser evil to have." I think not knowing, and imagining worst-case scenarios, is the worst place to be in. I hope this gets resolved soon. How are your kids doing through all of this? I imagine it's tough being scared and trying to function normally as parents...You are all constantly in my thoughts.

 

[breezy1077]

Thanks Dee! My youngest is probably too young to realize - although she does make the grunting sound DH does when he seizes - we're all able to laugh at her mimicing my husband. DS has PDD-NOS, so I'm not sure how much he's picked up on what's happening and we don't want to sit down and tt them until we know something. I think he does pick up on the stress though because he's had some recent set-backs in behavior at school lately.
who knows though. I think the Dr. only had the head sched., but we did run into some resistence to the MRI, the ins. co. would only approve it after talking directly to the Dr..

I just really appreciate the support. Thank you!!!

 

[breezy1077]

DH just told me last night that he has something new happening.

He said it feels like there's a buzzing inside his thigh on the leg that always gives out.

He said it feels like there's a cell phone inside his thigh vibrating? It's off and on and has been going on since the weekend. Does this new symptom shed any light to anyone on what this might be?

 

[dee47]

Can he see his muscles twitching when it's going on? This could be fasciculation (muscle twitching). It is a symptom of ALS, MS, or nothing at all, depending. It is most commonly associated with ALS, though few people know there is a syndrome called Benign Fasciculation Syndrome (BFS). It's annoying, but harmless. An EMG is one test to show if the symptom is part of BFS or something else. Make sure your DH tells his doc about this. Stress and anxiety can worsen BFS, BTW. And surely your DH is not stressed at all at the moment

I'm sorry your DS is having stress-related setbacks. Kids really do pick up on stress, and sometimes bad behavior is the only way they can express their own anxiety -- my DS was almost impossible in the months before my ex and I separated. The tension at home was so bad and he just...let us know it was getting to him. In the only way he could.

PM me if you need to vent off list. I'm sending more hugs and good thoughts your way...

 

[breezy1077]

Thanks dee, I might take you up on that PM later. He called the Dr. today to let them know. I'll keep you posted. Again, it means so much that you're helping me right now. Thank you!!!

 

[Mackey Mouse]

I hope you find out what this is Breezy, the not-knowing is so difficult.. Keep us in the loop..

Thanks to all who are trying to help here..

 

[dee47]

Keep your chin up, Breezy. We're all thinking of you and you family!

 

[disneyloveNY]

The choking is very worrisome. That symptom needs to be looked at more closely. A swallow study (video fluoroscopy) should be done. It takes about ten minutes, no pain. Simply swallowing different textured foods mixed with dye while the radiologist takes video x-rays. Choking can lead to aspiration even in small amounts which can lead to infection. I would insist on this being looked at.

 

[breezy1077]

Well, DH is going for the EMG tomorrow (wednesday). I'm going with him, so I'll make sure he mentions the leg twitches too. Does anyone know how soon the results come in? If they can't figure out what's wrong after this, I think I'll scream. I mean - what will they do next for tests? Bloodwork/neg, MRI/neg, EEG/neg.. Ugh. DH is frustrated too, and I can see that he's really sick of all the seizures.

The choking thing is on my top list of priorities for the doctor tomorrow. He's not just choking on saliva anymore. Now he chokes on food all the time. Ugh.

I'll keep y'all posted...


Ugh.

 

[dee47]

Breezy, if no one does or says anything definitive about the choking tomorrow you need to physically grab someone and DEMAND answers. Or else he might die of aspiration pneumonia before they take it seriously. This symptom should have set off red alerts a LONG time ago, IMHO (I think I said that before).

I can understand your frustration! Agh!

Good luck tomorrow.