1 month in since Diagnosis - this is the most baffling diease; doesn't help that DR's do not seem to have any answers that are worthwhile.

[Juliew19673]

I have had Ocrevus, IV steroids; Modafinil and Baclofen for PPMS. None of these have helped, I'm still exhausted, have dropped 15 pounds (I didn't have to begin w/to lose). I take B12, D3, Niacin, C and Lecithin. Eat every vegetable and fruit I can work into my day in every possible form. I'm frustrated!!

[Tinker-Belle]

Welcome to this group. Of course, we would all prefer not to have cause to be in it. I hope you are able to find a neurologist who can help better guide your journey. Unfortunately, there aren't a whole lot of answers with MS. We are all, even when classified with the same type, so very different. What works for some doesn't work for others, etc. I was in the same boat as you with too much weight loss at one point. Like you, I didn't have it to lose. The doctor called it Cachexia, I believe. Ultimately, I stopped taking Topamax and was able to get back to a healthier weight. I'm not sure if any of the medications you are on have that side effect or not. Be proactive, though, and surround yourself with a good care team. Easier said than done, I know. Best wishes.

[Iona60 in reply to Tinker-Belle]

Hi Tinkerbell

[Tinker-Belle in reply to Iona60]

Hi, lona60. It's been a while. I hope you are doing well!

[Jesmcd2 CommunityAmbassador]

Hi Juliew19673 Welcome to the wonderful roller coaster ride of MS. I'm sorry that your going thru all this. And I'd like to say it gets easier, but it does get more what's the word? Manageable? I don't know.🙄

Just hang on! 😟🤣 As everyday is a new one!

Are you still taking the modinifil? That should help with your energy.☺

Feel free to ask,vent, share away here! It's what we are all here for!

J🤗💕🌠

[Juliew19673 in reply to Jesmcd2]

I have yet to see any "Energy" from Modafinil; it feels to me that it helps take away the "Brain fog." I expected it to be more like steroids - that is a truer feeling of a energy boost.

[Jesmcd2 CommunityAmbassador in reply to Juliew19673]

Julie, I'm sorry that the modnifili isn't working for you. Maybe you need the name brand Provigil?

We arnt your Drs. And we can't dx you. Just a suggestion.

But this isn't like a super speed. By any means. It's to help you get through your day.☺️

I know it took me about 2wks for it to kick in. There are other meds that can help you.☺️

Make sure it's not depression also!🤗💕

J🌠

[Juliew19673 in reply to Jesmcd2]

I started taking Zoloft the week after DX. Which has helped. I wonder if Provigil would be better and will see if I can get it. Thanks.

[Jesmcd2 CommunityAmbassador in reply to Juliew19673]

Talk to your health care team! And be your own advocate! Juliew19673 🤗💕

Feel any better today?

J🌠

[Juliew19673 in reply to Jesmcd2]

This week I took off - vacation to just focus only on me and to figure out the proper way to take Baclofen, which does help w/Spaticity, but the drugged side affect is to much to take everyday. I'm trying taking just 5mg at bedtime. Woke up today feeling druggey. My Neurologist said I need to build up a tolerance to the drug, so I'm going to keep playing with the timing. Fingers crossed!

[Lilith08 in reply to Juliew19673]

It took I think a couple of months before I stopped feeling sleepy from the Baclofen. At first I took 10 mg in the morning and 10 before bed.

How long have you been on it?

[Fancy1959]

Juliew19673, it's Fancy1959. First things first since I don't believe I've spoken to you before I would like to walk him you to this awesome chat room. We promise to give you a safe place to come and ask questions, voice your concerns, and simply speak to others who truly understand what you are going through. All this is done by some of the most compassionate, caring, and kindest people I have ever had the pleasure of working with.

Next I would ask you to take a deep breath and know things will level out for you. As far as starting ocrevus your neurologist is on top of things if he's already got you on this DMT. You are right about Ms being baffling. It is without a doubt one of the most unique and intricate diseases that affects each and every person slightly differently. We all travel down the path that Ms leads us down but each and every person's path has slightly different bumps in it, detours around things, roadblocks that it creates, and rough and rocky spot scattered throughout it.

You have to understand that it's only been 1 month since your diagnosis and I know how scared you are right now because I too was in the same position that you are. Your neurologist has put you on quickly one of the newest and best DMTs out there. Realize that ocrevus is a drug that works using only a long-term commitment. The best results that the clinical trials and the 4 year usage of it worldwide with over 40,000 people now being on it happens some one and a half to two and a half years into the medications usage. It sounds like you're eating some of the best possible food groups that will help this disease but you need to eat enough to keep your weight up. Once the shock wears off of being diagnosed with this disease that none of us expected would ever touch our lives hopefully your appetite will come back and you will have less issues keeping your weight up.

We have a broad shoulder and you can contact myself and many others in this chat room to simply vent your frustrations and concerns anytime you wish. Listening is often what we do best in is often what helps individuals the most when they are stressed out and dealing with the many intricacies that go along with MS. Until we speak again please take care of yourself. Remember that together we are stronger!

[Juleigh21]

Give your body some time to respond to all the meds and try not to stress; as stress is an MS killer. Good luck and please keep in touch.

[Kenu]

Welcome to our crazy 😜 group of MSers. I was diagnosed twenty three years ago and have been on seven different DMT’s thru the years. As one quit working and newer better ones came out I changed. I am currently on Aubagio and doing great 👍. The main thing is staying on a DMT to slow down progression of MS. We are all different and each drug reacts differently to all of us. Stay strong and positive it will improve 🙏. I have an afo for foot drop and a walking stick as needed. I can still drive and been on SSDI for last two and half years. This is a great place to vent and find out lots of information on MS. We are not doctors but we have experience and care for each other 👍. 🐾😉. Ken

[Artgirl15]

Julie, I was diagnosed over 20 years ago with RRMS and I know others can speak better to PPMS, but it is scary for all of us at first!

When I was diagnosed, I had all kinds of crazy symptoms. MS was all I could think about and I challenged myself to go just one day without thinking about it. After awhile, my symptoms settled down a lot and I have been able to think about it less.

I have heard other people say the same.

My best advice is to remain positive and know you are doing a great job learning about and treating MS. Make sure your neurologist is an MS specialist who will listen and address your concerns.

MS is something we have but it doesn’t define us. You are so much more than MS!

Stay away from people who bring you down.

I hope we hear from you soon that things are better.

❤️

Eloise

[Jazzyinco]

Julie, Yes welcome, welcome to this most supportive group& compssionate people battling the MonSter disease together daily, i too have my up's & down's w/PPMS & my body totally rejects the RX drugs, u might want to ask ur Neuro whom specialises in MS to test u for the JCvirus, that too can mess us upw/PPMS. I too am trying to manage mine all natural, & i weigh about 96lbs. Soakin wet, i neither cannot gain weight either, u have to go to the girl's side to get clothing or boy's, So, i totally understand ur frustration, as i'm & my hub/caregiver are so embarassed when people look @ me saddened i am there & how dar n skinny i am.😱 but i just take a deep breath & keep on truckin on, We may have M.S. but never let it have us! We R here for u always.🌈😻🐾🌹🌷🌸💐🌺🌻💪Stay Strong, Many Prayers for U & Blessings---Jazzyinco

[greaterexp]

I so wish you didn't have to go through this, but since you share this diagnosis, you are in a great group. These folks helped me so much after my diagnosis, and they still encourage me every day.

Is it possible to get to an MS center where the neurologists and support staff understand MS better than most? I know that isn't always possible, but it may be worth looking into.

Please come back often. We all try to answer questions the best we can according to our experiences. You may vent safely here, too. I hope we become an extension of family for you as you go through this.

[Juliew19673 in reply to greaterexp]

I'm going to look for an MS center. Living in Los Angeles I would think there should be some and I think that would be very helpful. Thanks.

[Iona60]

Hi and welcome. It takes a while for ms to calm down and for your body to adjust to all the meds. Hoping that you will feel better soon.

[StefShu]

Hi there Julie! Have you thought of Gluten Allergy aka Celiac? KR Stefie

[Juliew19673]

Yes in the beginning I cut out wheat and dairy. I then began the astonishing weight loss. I added everything back, and am begining to gain. 2 pounds, but it's a start. I'm happy to eat cheese again.