Hoping for Initial input

[John J]

Hi - This is my first post and I was hoping to get input on some recent changes my wife is going through and where we are at from doctor visits and tests. In early February my wife suffered an episode that seem to be visually triggered that put her down and bed ridden for 3 days. It appeared to be more of flu like symptoms. After our PCP was seen and several blood tests, eye/ear specialist, and neurologist was seen. An MRI & MRA appeared negative. Since the 1st episode several new symptoms have happen to date including 2 more similar episodes. I would like to list the new neurologist and get some opinions. This is getting very frustrating to us because the only thing we have been told is that this could be an autoimmune thing and the first Neurologist said inner ear and gave her valium. Our PCP has set us up with a new Neurologist. Thanks for any input.

- Lump on shoulder/neck area (non-pain), disappear in an hour, new bruises noticed in groin area
- Hard fixed lumps behind ears
- Extreme fatigue & weakness at times
- Uncontrolled tremors, some difficulty breathing
- Pain in wrist, feet, stomach, chest
- Slow & stiffness walking
- Leg tremor 24/7 unless pressure applied
- Slurred speech type problems tung feels thick and also feels like she can't work it
- Rash on scalp
- Tender stomach (especially after meals)
- Posture change while sitting – 1)folds hands over & wedges in waist 2) crosses top & bottom of feet over
- Shuffle type walk – mainly in morning and at night

Thank you again for any input. JJ

 

[patricia1]

This sound very conplicated you need to see a als clinic Some of the syptoms sound like mine and I have als but some sound like parkinsons or ms so I am not a md But rule out the worst which is als and if its not that then go on from there. Has your wife had a flu shot or any shot in Feb,when it started or do you live in a lymes area because it starts out with being sick for three days .Your in for a long haul as we all were So hang it there My prays to your wife.

 

[John J]

Thank You

Thank you Patricia for your response. She did not get a flu shot nor do we live in a Lyme area. From research I have seen that this is going to be a long drawn out process. It seems we are in some type of narrowing down stage. My frustration has come from not being able to find any information on frequency of some ALS symptoms such as do some of them come and go where as some are really 24/7. I also haven't found anything on timelines. seems that a whole lot of bad systems have happen in the last two months. I did forget to mention that in the last week she has developed some severe jaw pain and I have noticed some memory problems. Once again thank you so much for responding. JJ

 

[CindyM]

Hi John. Sorry to hear about your wife's symptoms. Amost sounded like an Aunt of mine who years ago came down with a strange infection that took weeks to diagnosed. this was back in the '70's so hopefully the medical community has more testing at their disposal today. Auntie's infection turned out to be an obscure variety that came on after she had strep throat. So anything is possible-hopefully even curable! It is frustrating, though, to wait for tests and then wait for the results. Keep us informed, OK? Cindy

 

[Jamiet]

John,

My first reaction is NO ALS, but, it's one of two things: 1) MS, 2) Infection

Most of us here have been thru waht you are going thru, mabye not as fast, but the drs. visits, frustrations and just plain not knowing are horrible and enough to make you crazy.

What i would suggest, is that you get a referral, to a major acedemic center. I would day Mayo Clinic, but it's 3 months. I think this is where you need to be.

I don't know what part of the country you are from, but, i go to Houston Methodist and they have an entire Neurology dept., a specailtist for each type (stroke, neuromusclar, etc etc). If this does not suffice, they have an ifections disease specalist and a specalist for about anything you need and it's a teaching facility, which is where you need to be. I wouldn't waste alot of time with the local neuros where you are at, that's my personal opinion.

You can go to the MDA website and find the MDA approved facilities around the US, there are about 10 of them. If you call with her symptoms, you should get in 4 - 6 weeks wait, which is not bad.

i would schedule all the appointments i can now, with every facility you can think of, then, you cancel the ones you don't need, but if you do need it, it wont be a whole new wait.

Good luck, we're here to answer questions for you any time you need.

Rgds,

Jamie