Changes with fascics/spasms

[stilljennifer]

This is all I was going to post but I got on a roll: Has anyone had fascics that turned into spasms (no longer little annoying twitches)?

Tuesday is my second appointment with the Neuromuscular Department. I am assuming I will have another EMG. My neuro has been checking my tongue each time . He's told me three tmes in three different ways that he thinks I have PLS. But I'm still afraid of ALS, particularly since I continue to have fascics (slowed down for a while but back with a vengeance now).

My fascics have turned from quick like twitches here and there to a muscle that actually has spasms for a little while and my twitches (quick ones) are now usually in my face or hands.. particularly my chin, lips and eyes (one lasted over a week in my eye and my neuro said my eyeball was actually shaking a bit, too)....

Now I am dealing with depression and debating whether or not to take an antidepressant. I hate the side effects of medications! I HATE taking so many! I HATE that I cannot have an orgasm. I HATE that people want me to be positive and cheerful all of the time. I TRY! NOBODY wants to talk about this anymore.

I HATE falling into things and having bruises. I am tired of laughing at myself. I am tired of wondering. It's been almost two years.

They've ruled out everything but HPS and PLS and my neuro always says, "well, I still think you have PLS but we can do another MRI if you want." HA. I AM MAD. I am HURTING.

Please forgive me for venting like this. I know so many of you are dealing with so much more. I just remarried and he is the most amazing man (and doctor but not my neuro ) and he is trying hard to help me stay positive but sometimes I just really, really need to vent but I feel so guilty when I do.

 

[stilljennifer]

Wanted to add that although I know MS is no walk in the park, I had HOPE that at least there was some sort of treatment to slow down progression or even lengthen "episodes". I had myself SOOOO convinced of this! I think that i why I am so down right now.

 

[Al]

We do allow occasional venting and pity parties. Hopefully you'll find out what's wrong and then deal with it.

AL.

 

[Northern Dancer]

Jennifer,

MS is certainly no'walk in the park'. In my career I have see many MS patients who have been totally disabled and their progress was quick. And many were in their early 20's.

As my neuro pointed out PLS is the least of the 3 diagnoses if you had the ability to choose.

From what I have read on this forum from the PALS ( they are truly the only experts on here ) fasciculations are not an outstanding symptom to look for in diagnosing ALS. Many people without neurological problems have fasciculations that they never are aware off. I have seen them on my husband's arms and hands and he is totally unaware. Perhaps, the only difference is the threshold at which we feel them.

Hoping that all well be OK,

ND

 

[olly]

hey jeniffer,its been 11yrs but i can still laugh at myself....................if you dont laugh you'll cry,thats what i always say.
oh its been no walk in the park and i suffer from depression time to time(been depressed lately) but there are worse things.

i was evaluated for over 7yrs for ms,repeated mri's but in the end my neuro said thats it.......enough testing.
i too was 100% convinced i had ms and could not take in my pls diagnosed.
also i began with twitching several months after my first symptoms right upto this day.

honestly jennifer the best thing you can do to help yourself is to try and live each day to the full and enjoy life to the best of your capability.
oh it may sound so cliche and we can say i'm in pain or i can't do this and that..........but its these attitudes that hold us back and make things ten times harder for us.

i had an aunt and uncle visit the other evening,not seen them for some time.
my aunt asked how i was feeling and coping..........i replied i'm ok,just plodding along even though i was crippled in pain and not doing well.
my aunt said .......you never complain and just get on with it but i suppose thats what you have to do.
if i felt depressed,complained or did nothing because of pain ect i may as well not be here.

yesterday i tried putting up a small flat pack cd/dvd book case,i used to be the queen of flat packs.
took 5hrs and a lot of swearing but i did it.
totally stiff and crippled from being on the floor but it was worth it,i smile everytime i look at it with my cd/dvd's in.
another day........another triumph.

suitable intrests and hobbies are great,many pals have these and it gives them a sense of achievement that they are doing something.
take up painting,sewing . or get a pet,pets are great therapists.

yes its s**t what has happened to us but we can not change it,we have to live withit or it will kill us sooner than we wish.
you know you can talk to anyone of us if you feel too low.

take care.
caroline

 

[hopingforcure]

Great advice from Olly, it really was how I feel, it resonated with me completely. I had tears reading it, for I felt so much the same. Great advice from a wonderful lady, as always. I am thankful for posts like this.

 

[Moonmark]

Hi Jennifer- I just wanted to add that there are some antidepressants that have fewer sexual side effects, i.e. Wellbutrin and Serzone. There are also some even newer drugs out there that you can ask your doctor about-- not sure of their names. there are also techniques for reducing sexual side effects, such as not taking medication on the weekend, taking it at night, reducing the dosage, or adding another med that can counteract the loss of sexual function to some degree.

I also just heard an interesting report about the beneficial effects of regular daily exercise on depression. not sure if you are able to exercise at all, but there was a large study done recently showing that regular vigorous exercise can equal the effects of antidepressants, without all the nasty side effects.

take care--

Sandra