Back

Patients Multiple sclerosis

Not doing so good..

232 views
4 times supported
23 comments

Emma2190

07/02/2019 at 4:39 PM

Good advisor

Emma2190

Last activity on 07/04/2022 at 1:29 PM

Joined in 2018

94 comments posted | 70 in the Multiple sclerosis Forum

1 of their responses was helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend
Newsfeeder

View profileView Add a friendAdd Write

So hi members, I decided to write here after talking with @Lee__R‍ . I am currently not doing good, even dealing with new pains and new symptoms like; joint pains in my wrists and fingers, even pain all through my arms and neck at times. Headaches have returned, still trying to deal with those and a new symptom...nausea?

Not sure if anyone else deals with nausea from any type of motion, wrther it be in a car..pool swimming or anything, but now I am on a medicine called Banophen which is prescribed to me by my neurologist and it makes it so I can tolerate motion but causes me to have crashing fatigue shortly after taking it.

The other problem is I have been dealing with fatigue anyways and also having frequent bathroom visits where I can't seem to empty my bladder each time?? Anyone else going through all this?..

Anyway, I have an appointment on July 24th so will let everyone know then what my Neuro says since he thinks I might have progressed past rrms and I hope not, but the self Rebif injections seem to have stopped working too.

So tired of this..:(

-Emma

All comments

Go to the last comment

Emma2190

07/16/2019 at 4:04 PM

Good advisor

Emma2190

Last activity on 07/04/2022 at 1:29 PM

Joined in 2018

94 comments posted | 70 in the Multiple sclerosis Forum

1 of their responses was helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend
Newsfeeder

View profileView Add a friendAdd Write

@Lee__R‍ @TheMSDad‍ @LynndMS‍ So another update, despite my Daith piercing I am now having pain in my head every day, in my right arm and fingers, had another fall, pain in my neck, a lot of pains I have not dealt with before besides the migraines. Neuro is thinking PSMS no longer RRMS..im in so much pain lately and I hate this. Trying to hold on and will let everyone know about my results when I find out.

See the signature

Just trying to get by..

Not doing so good.. https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/not-doing-so-good-1159 2019-07-16 16:04:54

Lee__R

Community manager

07/17/2019 at 3:23 AM

Good advisor

Lee__R

Community manager

Last activity on 04/03/2020 at 5:04 PM

Joined in 2018

1,338 comments posted | 84 in the Multiple sclerosis Forum

2 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend
Top chef

View profileView Add a friendAdd Write

@Emma2190‍ So sorry to hear that the pain and discomfort is continuing. Have you had any tests done recently for your appointment on the 24th? Does anything... rub, tens machine, ... ease the pain in the arms?

Not doing so good.. https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/not-doing-so-good-1159 2019-07-17 03:23:05

Emma2190

07/17/2019 at 11:53 AM

Good advisor

Emma2190

Last activity on 07/04/2022 at 1:29 PM

Joined in 2018

94 comments posted | 70 in the Multiple sclerosis Forum

1 of their responses was helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend
Newsfeeder

View profileView Add a friendAdd Write

@Lee__R‍ No tests yet, and I don't know what tens machine is but no nothing has been helping the pain in my arms so far.

See the signature

Just trying to get by..

Not doing so good.. https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/not-doing-so-good-1159 2019-07-17 11:53:14

Lee__R

Community manager

07/23/2019 at 5:47 AM

Good advisor

Lee__R

Community manager

Last activity on 04/03/2020 at 5:04 PM

Joined in 2018

1,338 comments posted | 84 in the Multiple sclerosis Forum

2 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend
Top chef

View profileView Add a friendAdd Write

@Emma2190 so sorry to hear that. Hopefully you find out some news to put you at least in the right direction Thursday. Wishing you the best!

Not doing so good.. https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/not-doing-so-good-1159 2019-07-23 05:47:17

Emma2190

Edited on 07/23/2019 at 7:51 PM

Good advisor

Emma2190

Last activity on 07/04/2022 at 1:29 PM

Joined in 2018

94 comments posted | 70 in the Multiple sclerosis Forum

1 of their responses was helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend
Newsfeeder

View profileView Add a friendAdd Write

@Lee__R‍ Thank you and the appt is tomorrow.

See the signature

Just trying to get by..

Not doing so good.. https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/not-doing-so-good-1159 2019-07-23 19:50:45

Lee__R

Community manager

07/28/2019 at 6:33 PM

Good advisor

Lee__R

Community manager

Last activity on 04/03/2020 at 5:04 PM

Joined in 2018

1,338 comments posted | 84 in the Multiple sclerosis Forum

2 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend
Top chef

View profileView Add a friendAdd Write

@Emma2190 How did the appointment go? Do you care to share? If not, completely understandable and reach out whenever. Hope all is well.

Not doing so good.. https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/not-doing-so-good-1159 2019-07-28 18:33:46

Emma2190

07/28/2019 at 7:50 PM

Good advisor

Emma2190

Last activity on 07/04/2022 at 1:29 PM

Joined in 2018

94 comments posted | 70 in the Multiple sclerosis Forum

1 of their responses was helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend
Newsfeeder

View profileView Add a friendAdd Write

@Lee__R‍ I don't mind, just a little dizzy today with a weighed down in my head feeling.

The appointment went like it usually does except being scheduled for another MRI soon since my last was in 2016, so a bit overdo. My neuro is also having me try a medicine called Lyrica and I only take 1 a week then the next week 2, and etc for the remaining weeks. It's supposed to help out with my spasticity and spasms which he thinks are nerve related and causing my bladder problems as well. The other thing it is supposed help is migraines, so three major problems helped..if it works. Never been on it before so we'll see and he put me on a low dose of Lyrica due to my bad time with the Gabpentin.

I start it tomorrow, so when I can I will keep you and everyone updated on it.

Lastly, we discussed the Rebif and how it is no longer working which is a very big sign that progression has occured over time. (Something I will not find out until my MRI) and he gave me information on a med called Gileyna.

If anyone has info about this, please send me a message or comment here. This med slightly scares me since it can slow your heartrate and you have to be monitored for 6 hours??

See the signature

Just trying to get by..

Not doing so good.. https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/not-doing-so-good-1159 2019-07-28 19:50:06

MS_283

07/30/2019 at 2:05 AM

Good advisor

MS_283

Last activity on 11/23/2022 at 9:27 AM

Joined in 2018

57 comments posted | 36 in the Multiple sclerosis Forum

Rewards

Good Advisor
Contributor
Messenger
Explorer

View profileView Add a friendAdd Write

@Emma2190 Good to hear back from you. I wish I had information on the medications you mentioned, but I do not. It at least sounds to me like your doctor is cognizant of the interactions the medications can have with others, so that is positive. I hope Lyrica helps with the intense nerve pain you have been experiencing lately.

Not doing so good.. https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/not-doing-so-good-1159 2019-07-30 02:05:54

Emma2190

07/30/2019 at 5:15 PM

Good advisor

Emma2190

Last activity on 07/04/2022 at 1:29 PM

Joined in 2018

94 comments posted | 70 in the Multiple sclerosis Forum

1 of their responses was helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend
Newsfeeder

View profileView Add a friendAdd Write

@TheMSDad‍ I completely forgot you were on Gileyna until I read back on page 1 of this discussion of mine. If you have any further comments or warnings etc for the Gileyna since that is my neuro's next med offer, please feel free to post here or send me a message and yes being more at risk for viral infections is not something I want to experience either with two kiddos and I'm already knocked down pretty hard when I get sick as it is.

See the signature

Just trying to get by..

Not doing so good.. https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/not-doing-so-good-1159 2019-07-30 17:15:52

Emma2190

Edited on 07/30/2019 at 5:19 PM

Good advisor

Emma2190

Last activity on 07/04/2022 at 1:29 PM

Joined in 2018

94 comments posted | 70 in the Multiple sclerosis Forum

1 of their responses was helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend
Newsfeeder

View profileView Add a friendAdd Write

@MS_283 Yes he is a pretty good and thorough Neuroligist and I will keep you updated on the Lyrica as time goes by since this is a slow week by week increase dosage med.

Week 1 : 1 tablet a day

Week 2: 2 tablets a day

Then after both weeks I go onto the actual dose which is 3 daily and thats 75mgs.

See the signature

Just trying to get by..

Not doing so good.. https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/not-doing-so-good-1159 2019-07-30 17:18:40

Members are also commenting on...

Articles to discover...

10/04/2024 | Advice

Multiple sclerosis (MS) and sexual dysfunction: everything there is to know!

05/30/2024 | News

What are the benefits of herbal medicine for multiple sclerosis?

04/24/2024 | Testimonial

Multiple Sclerosis: “I am a warrior, and I will overcome this illness with love and positivity.”

02/02/2024 | News

Everything there is to know about Ponesimod (Ponvory®) and Fingolimod (Gilenya®)

02/01/2019 | Advice

Brain fog: Causes and how to cope

11/26/2018 | Testimonial

Multiple Sclerosis And The Success And Side-Effects With Various Treatments

08/17/2018 | Testimonial

No One Knows What Being Diagnosed with Multiple Sclerosis Is Like, So Maintain A Can-Do Attitude

05/10/2019 | Testimonial

Nicolas' story: Pursuing athletic dreams despite MS

Not doing so good..

All comments

Give your opinion

What do you think about the Carenity Forum and community?

What are your expectations from Carenity and what would you like to see in the future?

How were you diagnosed?

Members are also commenting on...

Articles to discover...

Medication fact sheets - patient opinions...