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Board: Multiple Sclerosis 06-01-2013, 07:35 PM
Replies: 6
Views: 1,001
Posted By anxiousme
Re: Is it now SPMS???

Muscle twitching scared me for along time. I've accepted that it is part of my MS and I no longer fear ALS. My mother had ALS...her twitches were very distinct. She experience muscle loss and...
Board: Multiple Sclerosis 05-27-2013, 05:49 PM
Replies: 6
Views: 1,001
Posted By anxiousme
Is it now SPMS???

Pretty bummed...I just got results from my latest MRI. New activity, in fact one area of enhancement is still enhancing since Nov 2012 (6 mos). I thought enhanced lesions only were supposed to show...
Board: Multiple Sclerosis 10-12-2012, 06:45 PM
Replies: 9
Views: 1,772
Posted By anxiousme
Re: Need Advice Doc Wants Me to Start Tysabri

I have had 7 tysabri infusions. No side effects...occasional headache within the first days after infusion. I have to take Benadryl the day of infusion because it causes a histamine release and...
Board: Multiple Sclerosis 08-20-2012, 08:57 PM
Replies: 3
Views: 1,489
Posted By anxiousme
Re: Trigeminal Neuralgia and Exacerbation

I had TN in my lower right jaw....worst pain I have ever had!:eek: brought me to tears in an instant. Rx of tegritol....worked great however I had an allergic reaction to it and was covered in...
Board: Multiple Sclerosis 07-07-2012, 09:42 PM
Replies: 14
Views: 2,168
Posted By anxiousme
Re: Tysabri experiences

I'm currently taking Tysabri (infusion #4) yesterday. I was on Avonex for 4 years and Rebif about 1 1/2 years. I had a few new lesions on interferon so doc wanted me to switch to Gilenya. I didn't...
Board: Multiple Sclerosis 07-03-2012, 08:10 PM
Replies: 8
Views: 2,879
Posted By anxiousme
Re: Help! Double vision sucks

When I had double vision it lasted about 6-8 weeks...it is also the symptom I had that led to my diagnosis....back in 2006. I didn't use any meds to try to resolve. I just let the flare resolve and...
Board: Amyotrophic Lateral Sclerosis (ALS) 11-15-2011, 08:00 PM
Replies: 6
Views: 10,379
Posted By anxiousme
Re: Bulbar ALS... scared i may have it.

Doctors typically test the tongue/neck too. I'm not an expert so I can't answer that, but still having a negative EMG is good. Keep asking question...go for a second opinion...preferrably to an ALS...
Board: Amyotrophic Lateral Sclerosis (ALS) 11-11-2011, 07:29 PM
Replies: 6
Views: 10,379
Posted By anxiousme
Re: Bulbar ALS... scared i may have it.

The fact that your EMG came back normal is great news! Muscle twitches with ALS don't come and go. My mothers were more like fasciculations than twitches, meaning we could see creepy crawlers under...
Board: Multiple Sclerosis 10-21-2011, 10:26 AM
Replies: 21
Views: 6,019
Posted By anxiousme
Re: Here we go... Gilenya :/ ????

Well, I'm feeling better about the choice to start Gilenya. Of course I've been all over the web looking for information, what I have found in the world of blog spots and social networking has been...
Board: Amyotrophic Lateral Sclerosis (ALS) 10-20-2011, 12:02 PM
Replies: 16
Views: 24,181
Posted By anxiousme
Re: Recently Diagnosed with A.L.S but praying...

I'm really sorry to hear that you received this diagnosis. I do hope for you. I hope this situation plays out the best it can for you and your family. Times will be difficult but in caring for my...
Board: Multiple Sclerosis 10-19-2011, 05:04 PM
Replies: 21
Views: 6,019
Posted By anxiousme
Re: Here we go....Gilenya :/ ????

Well, I've done most of the pre-test. I'm waiting to have my vision test. My MS specialist told me to continue Rebif. Do you have to be off of it for 30 days before starting Gilenya?

Also, I...
Board: Amyotrophic Lateral Sclerosis (ALS) 10-19-2011, 04:55 PM
Replies: 16
Views: 24,181
Posted By anxiousme
Re: Recently Diagnosed with A.L.S but praying...

I've been thinking of you....Did you get any results from your test? No matter what happens, stay strong!!!!!
Board: Amyotrophic Lateral Sclerosis (ALS) 10-16-2011, 05:29 PM
Replies: 16
Views: 24,181
Posted By anxiousme
Re: Recently Diagnosed with A.L.S but praying...

I'm not a doctor so I can't answer your questions about other things your symptoms could be from. I just know the symptoms you have described do happen with ALS. The muscle conductivity test will...
Board: Amyotrophic Lateral Sclerosis (ALS) 10-15-2011, 04:06 PM
Replies: 16
Views: 24,181
Posted By anxiousme
Re: Recently Diagnosed with A.L.S but praying...

My prayers are with you. I know how scary it is...faith! An EMG will help the diagnosis. Have you had one? Also, did he mention your reflexes were over active. Your symptoms do sound as if ALS...
Board: Multiple Sclerosis 10-11-2011, 06:54 PM
Replies: 21
Views: 6,019
Posted By anxiousme
Re: Here we go....Gilenya :/ ????

Thanks Michelle...Good luck. Keep me posted. I've decided to go for it. So I'm waiting to be contacted by the company reps. Also, I have to go to my local doctor to set up all the pre-screen...
Board: Multiple Sclerosis 10-10-2011, 07:15 PM
Replies: 21
Views: 6,019
Posted By anxiousme
Re: Here we go....Gilenya :/ ????

Thanks Nikki! I know I'm scared...I just feel icky on Rebif (almost toxic sometimes) plus the new lesion. I've been on Rebif for 1 year. When you mention how much better you feel off the...
Board: Multiple Sclerosis 10-10-2011, 06:26 PM
Replies: 21
Views: 6,019
Posted By anxiousme
Here we go... Gilenya :/ ????

Well, I knew this was going to happen today. My MS Specialist at UCSF is recommending I switch to Gilenya from Rebif. I had 1 new lesion last summer (Avonex) and 1 new on this summer on Rebif. He...
Board: Amyotrophic Lateral Sclerosis (ALS) 09-21-2011, 05:12 PM
Replies: 3
Views: 11,703
Posted By anxiousme
Re: is this als ?

I would recommend getting a definite diagnosis before treating your condition. You are right about antibiotics possible making it worse. A lot of people insisted I had Lyme and suggested I start...
Board: Multiple Sclerosis 09-19-2011, 06:17 PM
Replies: 8
Views: 3,774
Posted By anxiousme
Re: MS, Rebif, Nicotine Patch, etc, etc

Congrats on your decision to quit!!!! You can do it.

I quit 13 months ago. I'm not going to lie...it's hard...I still want a smoke ;) I love it, I enjoy it, but my dad died a 44 from lung...
Board: Amyotrophic Lateral Sclerosis (ALS) 09-04-2011, 07:09 PM
Replies: 1
Views: 3,472
Posted By anxiousme
Re: My brother has ALS

Sorry, for your brother and family. It is so difficult to with your loved ones at the end of life....although reassurring that their suffering will soon be over. They will be free from their body. ...
Board: Amyotrophic Lateral Sclerosis (ALS) 09-01-2011, 05:17 AM
Replies: 9
Views: 11,469
Posted By anxiousme
Re: I'm back. progressed a bit. Need some advice

He was dx with ALS but received treatment for LYME. Now he has improved significantly. It appears that your LYME test must come from certain labs.

Lyme is possible. I have a friend who insisted...
Board: Amyotrophic Lateral Sclerosis (ALS) 09-01-2011, 05:06 AM
Replies: 4
Views: 3,113
Posted By anxiousme
Re: At my wits end!

I'm glad I could help...Please don't get discouraged about no one posting a response. Just ask it again at another time. For some reason this thread doesn't get a lot of dialog going. I have a...
Board: Amyotrophic Lateral Sclerosis (ALS) 08-31-2011, 06:38 PM
Replies: 4
Views: 3,113
Posted By anxiousme
Re: At my wits end!

So sorry you and your husband are going through this. It is definitely a difficult disease to handle. I really can't advise you which way to go but I think you need to know what your husband is...
Board: Amyotrophic Lateral Sclerosis (ALS) 08-17-2011, 08:20 PM
Replies: 1
Views: 16,131
Posted By anxiousme
Re: Twitches/pulses on the top of foot...???

Twitching in ALS doesn't come and go. It is constant and usually comes later in the disease meaning it typically isn't the first symptom. You would have loss of muscle and function in your foot...
Board: Amyotrophic Lateral Sclerosis (ALS) 08-17-2011, 08:13 PM
Replies: 1
Views: 2,925
Posted By anxiousme
Re: Slightly worried about ALS. What's going on?

What's going on...Does NOT sound like ALS! Relax....journal your symptoms. Then you will have documented when something comes and goes....it will help determine if you have triggers, etc. Shaking,...
Board: Amyotrophic Lateral Sclerosis (ALS) 08-09-2011, 09:46 PM
Replies: 2
Views: 4,075
Posted By anxiousme
Re: ALS symptoms?

This doesn't sound like ALS...It maybe neurological but not ALS. Keep a journal of your symptoms, when they start...end...do they come and go...Do you see patterns, etc...It will help you when and...
Board: Multiple Sclerosis 08-03-2011, 08:46 PM
Replies: 20
Views: 6,765
Posted By anxiousme
Re: Eleveated liver enzymes, on Rebif...

You will be fine:) Enjoy your vacation to the fullest. Lucky!
Board: Multiple Sclerosis 08-03-2011, 07:47 PM
Replies: 20
Views: 6,765
Posted By anxiousme
Re: Eleveated liver enzymes, on Rebif...

I just went through this. My enzymes shot way up....I don't recall, but higher than yours. My GP ran the test for me. He was alarmed and so was I. I thought I was going to have to quit Rebif...
Board: Amyotrophic Lateral Sclerosis (ALS) 08-03-2011, 05:31 PM
Replies: 1
Views: 3,344
Posted By anxiousme
Re: New here ALS?

Your doctors sound like they are on the right track. What did the emg point to in your leg. ALS results are characterized by denervation present. Some other signs of ALS are rapid weight loss,...
Board: Amyotrophic Lateral Sclerosis (ALS) 06-28-2011, 05:10 PM
Replies: 9
Views: 11,469
Posted By anxiousme
Re: I'm back. progressed a bit. Need some advice

ALS has weakness involved. Symptoms don't come and go. USUALLY...the twitching starts after major muscle loss. Weight loss is markable. Yes this sounds neurological but doesn't scream ALS...
Board: Amyotrophic Lateral Sclerosis (ALS) 06-19-2011, 07:59 PM
Replies: 2
Views: 5,463
Posted By anxiousme
Re: Are symptoms similar to ALS

I might suggest asking about MS. If you are heat sensitive, have tingling and numbness, eye issues and twitching, it could be MS. A good MS doctor could tell you if your brain lesions are from...
Board: Multiple Sclerosis 06-15-2011, 07:11 PM
Replies: 16
Views: 8,832
Posted By anxiousme
Re: I did it! First shot of Rebif today!!

Congratulations!!!! Getting through the first shot is a big deal...so happy for you. I was on Avonex for 4 years. I switched to Rebif last October. I still have flu like symptoms, but not bad. ...
Board: Amyotrophic Lateral Sclerosis (ALS) 06-15-2011, 04:00 PM
Replies: 1
Views: 3,305
Posted By anxiousme
Re: ALS like symptoms

I just wanted to wish you and your family luck. If you haven't got a definite diagnosis, I would continue to seek different opinions. The fact that her decline has leveled off is good news. ...
Board: Amyotrophic Lateral Sclerosis (ALS) 05-15-2011, 08:02 PM
Replies: 5
Views: 9,659
Posted By anxiousme
Re: My spine.

I'm not sure why you think this is ALS. I had difficulty understanding what your test results revealed, but it sounds like curvature of the spine. I imagine your symptoms could be related that. ...
Board: Amyotrophic Lateral Sclerosis (ALS) 04-24-2011, 05:17 PM
Replies: 9
Views: 13,906
Posted By anxiousme
Re: I Need some advice. pls help me

Yes, yes and yes....I do have vibrating feelings just like a cell phone is next to you. Yes there is something call the "MS hug". I feels like a tightening of the chest (a hug). That's why I...
Board: Amyotrophic Lateral Sclerosis (ALS) 04-23-2011, 04:09 PM
Replies: 9
Views: 13,906
Posted By anxiousme
Re: I Need some advice. pls help me

Relax....anxiety and worry make things MUCH worse. You're doing a good job of recording your symptoms. Continue to do this. Record how long each thing last. ALS symtoms don't come and go. ...
Board: Amyotrophic Lateral Sclerosis (ALS) 04-15-2011, 08:38 PM
Replies: 1
Views: 5,067
Posted By anxiousme
Re: Ongoing fear of als, please help, anybody

I'm sure what you are feeling can be scary, but try not to let anxiety take control. From my little experience with ALS (my mom), this doesn't scream ALS. From my experience, ALS symptoms don't...
Board: Amyotrophic Lateral Sclerosis (ALS) 03-23-2011, 07:25 PM
Replies: 6
Views: 51,388
Posted By anxiousme
Re: Twitching for over two months

No I don't take anything for muscle twitching. Visit the MS board. It is a much more active site. There are several folks on that board that have a lot of helpful advice :) You are right about...
Board: Amyotrophic Lateral Sclerosis (ALS) 03-22-2011, 05:37 PM
Replies: 6
Views: 51,388
Posted By anxiousme
Re: Twitching for over two months

Remember ALS does not come and go, even at rest. You're muscle twitching doesn't sound like ALS related muscle twitching. My moms twitching looked like little creepy crawlies under her skin AND she...
Board: Amyotrophic Lateral Sclerosis (ALS) 03-21-2011, 08:45 PM
Replies: 3
Views: 3,641
Posted By anxiousme
Re: Curious about Symptoms

Yeah....don't worry to much. ALS is a rare disease ;)
Board: Amyotrophic Lateral Sclerosis (ALS) 03-21-2011, 05:33 PM
Replies: 3
Views: 3,641
Posted By anxiousme
Re: Curious about Symptoms

weakness in one hand was how my mothers began. It then spread to the other hand and arm. She first had problems buttoning shirts, undoing the gas cap on her car, etc.... At least you know what you...
Board: Amyotrophic Lateral Sclerosis (ALS) 03-21-2011, 05:27 PM
Replies: 3
Views: 8,016
Posted By anxiousme
Re: Rapid heart rate

You're right...It is nice to know someone else is out there that is going through a similar horrible thing. You are also right about the shallow breathing causing a rapid heart rate. I forgot to...
Board: Amyotrophic Lateral Sclerosis (ALS) 03-19-2011, 07:23 PM
Replies: 3
Views: 8,016
Posted By anxiousme
Re: Rapid heart rate

I don't have an answer for you. I just wanted to say I'm sorry that your husband and you are going through this. My mom's ALS progressed fast, too. I'm actually thankful for that...I hated seeing...
Board: Amyotrophic Lateral Sclerosis (ALS) 02-16-2011, 06:14 PM
Replies: 4
Views: 4,300
Posted By anxiousme
Re: new ALS patient

My prayers are with you. The disease progresses differently and at a different rate for everyone. I imagine the doctors would want a brain and/or cervical MRI. This would be to look for diseases...
Board: Amyotrophic Lateral Sclerosis (ALS) 01-30-2011, 07:39 PM
Replies: 2
Views: 15,235
Posted By anxiousme
Re: Twitching, Possibly Atrophy - Please Help

First, I just want to let you know I'm hoping for great results and wishing you the best.

Second, in MY opinion this doesn't sound like the onset of ALS. Anything is possible and not the same for...
Board: Multiple Sclerosis 01-15-2011, 02:41 AM
Replies: 10
Views: 5,219
Posted By anxiousme
Re: Refib

Have you had your liver enzymes checked since you started? I've been on Rebif since October...just had my liver checked...it was 2x what the normal range is. However, doctors said to continue...
Board: Multiple Sclerosis 01-15-2011, 02:32 AM
Replies: 8
Views: 14,965
Posted By anxiousme
Re: disappearing brain lesions

I just recently watched the National MS Society Webcast...the panel of doctors tried to answer this question. (In fact the webcast should be on their website) One of the experts explain that it is...
Board: Amyotrophic Lateral Sclerosis (ALS) 01-11-2011, 05:09 PM
Replies: 2
Views: 3,943
Posted By anxiousme
Re: my mom died

Wow Keem...I'm sorry for your loss. Oh, it's so hard to say goodbye. You are so happy the suffering has ended, but realize how much pain you are left with. You are in my prayers...I send you hugs....
Board: Amyotrophic Lateral Sclerosis (ALS) 12-03-2010, 05:56 PM
Replies: 2
Views: 8,317
Posted By anxiousme
Re: Twitching has me beat me up terribly...

Muscle twitching does not come and go with ALS. It is constant. I have MS, just this year (June) I went to my neurologist for muscle twitching in my calf AND my toes are moving side to side. The...
Board: Amyotrophic Lateral Sclerosis (ALS) 12-01-2010, 08:56 PM
Replies: 4
Views: 4,671
Posted By anxiousme
Re: Im angry Im sad Im confused

Rant away!!! It really helps. As I said, I still hurt. My mom was my best friend. I'm very fortunate to of had such a close relationship with her! I can't lie, it's harder now for me then when I...
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