Very scared and appreciate advice

[Nikki J]

Barrow is excellent from all I have heard. Totally agree with an academic medical center being your next opinion. If your location is accurate there are centers in Texas too though

as an anecdote I will offer this story. A healthy woman in her 50s got covid here ( before vaccines). Wasn’t hospitalized but after “ recovering” she became so weak her spouse had to provide care for basic things like dressing ,toileting and such. The good part is she eventually recovered. Even mild covid can do horrible things. there are definitely a lot of other cases reported if you look for long covid.

as another anecdote. No matter how well a person feels they are describing something it may not be what it sounds like. I had a symptom that I described carefully (and factually when I did a , b happened) to an ALS specialist. They said oh you clearly have x When they eventually saw it it turned out to be y. Ultimately the only way to answers is tests and exams as you know.

No one here can tell you what is wrong . if you have questions about another center you are considering please ask

 

[GracyL]

Thank you so much and I agree and appreciate this. Can you recommend excellent academic centers in Texas? That is where I live actually. Thank you so very much. Covid has done very scary things for sure.

 

[Nikki J]

A number of our members have gotten answers at Houston Methodist I know. There are certainly other places in Texas that are also very good. As you can see I don’t live anywhere near there so hopefully you get some more feedback. Generally speaking though what you need is a neurologist in an academic medical center who can , if need be, refer you laterally in or out of neurology . Another anecdote a person I know was having what seemed to be neurological issues ( not ALS like) and was seeing a neurologist locally with no answers When they finally saw a neurologist at Mass General they were referred to a rheumatologist and that was their answer

 

[rmt]

Gracy, please do not panic because of Tippi's posts. Tippi's case is a very rare presentation of an extremely rare type of MND. And I mean EXTREMELY rare.

As they say, when you hear hoofbeats, think horses, not zebras.

In your case, the much more likely cause of your issues is covid. If you Google "covid muscle weakness" or "covid muscle twitching", you will see MANY articles of people experiencing your EXACT symptoms.

You should absolutely follow up with a second neurologist, and seek out medical advice from actual doctors (and not those of us who got our medical degree from Google Medical School). But try to look at it from the perspective that there is a very reasonable explanation for your symptoms (covid) that is much more likely than an extremely rare presentation of very rare MND.

Try to stay calm and enjoy the holidays. No matter what, you won't get this time back, so do your best to not waste it worrying about zebras!

 

[lgelb]

Here is a map showing clinics in Texas and elsewhere. In addition to Houston Methodist, Baylor has a Houston clinic. But closer to you are UTSA's clinic, and Scott & White's clinic in Round Rock. All would be well-equipped to investigate further if things are not clear after your second opinion.