Atrophy Diagnosed by Physiatrist?

[LisaQ.]

Hi Kate,
How odd that a physiatrist thought he saw atrophy. Has anyone concurred with his assessment, or was it just a fluke?

Otherwise, you certainly could be one of us. It is hard for us to say, but sensory symptoms, twitching, tremors, and perceived weakness are all commonly reported amongst those of us with bfs.

You can always read horror stories on other boards, and, since I haven't read them myself, I can't comment on them, but we pretty much make it a rule to stay off of those things here. I'm doubtful that much of the stuff you read there is even true, or at best, it is gross exaggeration by people who are understandably overwrought.

I do know that we've had plenty of neuros tell us, (speaking as the collective, 'we' here,) that they have NEVER diagnosed a case of **S in which there was measurable clinical weakness and a negative emg. We've been assured, time and time again that the emg would always show something.

There is, of course, some room for error in interpretation, but considering how progressive **S generally is, it would be extremely rare for the emg findings to be negative for long.

It surprises me that a specialist in Manhattan wouldn't have suggested bfs as a possibility? Where did you go?

I'm not sure if this helps you or not. I wanted to answer you as best as I could.

Blessings,
Sue

 

[timsuprelax]

Hey Kate
SLOW down & take a deep breath- you are at the point where most of us thought we were all gonna go by ALS or MS- step back and calm yourself- take a hot bath have a drink and chill- you are way over stressing and anxiety is at its max -Its the anxiety that will catch up to you and that will create the other symptoms as you fixate on each and every symptom- Read the BFS in a nutshell if you have not yet- my father passed away from ALS- i know what your going through at one point i thought it would be better to have a MS diagnosis rather than a ALS diagnosis- now that may be the case but still as a male MS is a devesating disease- so you can see where my head was at- PM LisaLM shell talk some sense into ya and give you the info you need- Alot of people here have had alot of what you are going through- be strong and confident in the drs diagnosis- your fine- its just BFS or something along that line- WE all have our days as far as i can tell - like i said- pm some of the people you feel comfortable e-mailing and i mean that in a way as to say those who have been through what your symptoms are or those who have and are always on the board -all good people with good inspirational info- You dont have ALS- Welcome to the BFS GANG
Best Regards
David S

 

[timsuprelax]

I was just talking about you and ya beat me by 2 minutes great minds think alikeLOL
see ya
David S

 

[LisaQ.]

OK Kate, now that you've heard from some of the boardies, let's review what has been shared here.

First of all, ONE physiatrist thought he observed some sort of "atrophy" in your hand.

There was a gal named Val2 on this board who was also told she had atrophy, except by a rheumie I think. (I've posted the link below) When she was finally seen by a neuro, (after totally freaking out,) he basically laughed and said no atrophy.



If an **S specialist examined you, he/she did all the appropriate testing and can often practically diagnose you based on clinical exam alone. In other words, they can identify **S the moment "it" walks in the door.

Because of that, and the emg testing you have passed already, you can be reassured that you don't have **S.

As others have said, there is often asymmetry from right to left and vice versa, and it would be common for a bfs'er to report feeling achy while holding a cup. I sometimes get achy when I blow-dry my hair, climb stairs, talk on the phone, etc. Any prolonged activity can often create fatigue in us.

My husband, who also has bfs, has the same problem.

Tripping over the carpet and dropping things isn't even a real concern, unless it is happening repeatedly, over time. And, quite frankly, I've had those days where all I did was think about tripping, and I stumbled, repeatedly. The more we ruminate about this stuff, the more likely it is that our bodies will receive our subliminal cues, and will follow our unconscious commands.

In "bfs in a nutshell," it specifically mentions "perceived weakness" vs "clinical weakness." Trust me, as weak as you may feel, your neuro knows the difference.

I would have SWORN back in the day that I had clinical weakness, and did all the self-testing, etc that so many of us do, and yet not ONE neuro (and I saw about 6 of them,) found me to have measurable weakness. I thought I couldn't even walk because I felt so shaky. I spent my days on the sofa, resigned to die. Now I feel completely normal. (Whatever THAT is, LOL.)

BFS creates strange sensations, twitching, numbness, tingling, rubber-bandy feelings, and it can all be misinterpreted as being something sinister. It isn't, however the anxiety which accompanies the fear of **S or MS is what makes the symptoms seem so much worse.

It's like this. If you develop headaches, do you automatically conclude that you have a brain tumor? Probably not, yet headaches ARE one symptom of a brain tumor. It's the same thing here. Twitching can be a symptom of **S, and tingling can be a symptom of MS, but the symptoms aren't exclusive to those maladies.

So, just allow yourself to believe that you are okay, and your body will start to feel better. It may take a few weeks for it to calm down to baseline, but you can and will feel better if you get a grip on the anxiety. The symptoms may not ever completely go away, but often times they will diminish and significantly improve.

Hope this helps.

Blessings,
Sue

 

[ho.katiemccann]

Thanks for your message Suzi.
After all your suggestions not to google and not to visit the als boards, what did I do but google numbness/tingling and ended up straight into a forum discussing the first symtoms of ALS. Two of these women said their first symptom was a numb kind of feeling. On the upside, most of them said that they had no pain early on and that I definitely get. So who knows. I am so up and down. It is all so frightening.

 

[LisaQ.]

Aww Luis, I'm sure Mexico is quite beautiful.

Don't take things too personally that you read. We love to kid around on this forum, and it takes a while to get used to our senses of humor.

We US fasciulators like to pick on the Canadians, and the English too. JK.

Actually, I would LOVE to go to Mexico sometime in the near future. I adore the food. I would just have to make sure it isn't too hot. With my bfs, I don't tolerate heat too well.

Blessings, and again, welcome to the forum.

Sue