Just diagnosed and joined this community. I know nothing about MS. No treatment yet. In a lot of pain, insomnia, etc. Getting worse especially at night. Sometimes in a wheelchair. Just turned 43. At home 95% of the time with my hubby and our 6 year old son and small dog Koda (chi-cocker mix). I feel really alone and confused and sick sometimes. I’ve been dismissed with everything and treated horribly by medical community for decades. I’m scared!!!!
New and terrified: Just diagnosed and... - My MSAA Community
New and terrified
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LogansMamaLlama
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Welcome to the group. I'm sorry to hear what you've been going through. I know it's incredibly scary. But here's the thing: you know what you have, so you can be helped. There are so many treatments for MS now. The first step is to find a neurologist you like. Being an MS specialist isn't required, but it's very good if you can find one. The group has a ton of experience they can share with you, and are sympathetic to all of the ups and downs of living with MS, so you've come to the right place.
I don't know if you saw this link when you found this group:
mymsaa.org/ms-information/n...
I wish you the best.
What is the best way to test for Ms?
I don't know about the best way. For me, it was about a million eye tests and an evoked potential test, along with an MRI, because I had an eye problem called optic neuritis. That was 20 plus years ago, though.Basically you need to see a neurologist. Here's a link you may find helpful.
For me, it was having a neurologist send me for an MRI while I was in the midst of a bad spell. My exacerbations only occur every 3-4 years, so usually I was through them and feeling better before the current doctor would send me for one. I honestly believe that's what made the difference in me finally getting a diagnosis.
I hated the evoked potentials. I had 2 of them and passed both. The doctors told me each time there was nothing wrong with me. I got my diagnosis a few days after the second one, so I don't put much faith in their use.
Thank you!
I had an MRI and a lumbar puncture. (I found the thought of that worse than it was. ) Yes, find yourself a neuro who specializes in MS if at all possible.
carolek572CommunityAmbassador
Welcome to the forum, LogansMamaLlama ! Have you been diagnosed with ‘ms’? I ask because it took almost 10 years for my diagnosis. Multiple sclerosis is not the easiest disease to diagnose. Don’t give up. My PCP finally diagnosed my ‘ms’. Best of luck, and in the meantime, you can go to mymsaa.org for assistance on finding a neurologist in your area, or to find more information on ms.
Not officially but I really think it’s that. I have all the symptoms, had mono at 16, and have a secondary issue that can be caused by Ms. I keep getting misdiagnosed or told I’m fine. I have an alignment coming up and this doctor has really good reviews. I’ve had awful luck with doctors in Washington State. I’m really nervous they’ll say I’m fine again. I sure don’t feel fine!!! Doctors can be so arrogant dismissive and cruel. I’m getting a second opinion if I’m told I’m fine again. I’ve given up on the medical community so many times but I await end up feeling so sick n scared I go back 
Hopefully you will get the answers as to what has been ailing you, LogansMamaLlama , at your next doctors appointment. Let us know how it goes, okay?
Will do. Thank you!
I wish you the best of luck. I went/going through similar and one thing helped me with arrogant doctors/doctresses . One specific marker in my blood was always high. When docs said im anxious/in my head/nothing wrong.. I asked them to point me to a medical journal article that discusses stress causing the marker in my blood to be elevated. They couldnt of course and a few actually rethought their "diagnosis". Others told me to ignore the marker. Maybe something like this can help you. You may not have MS also. Keep that in mind.
Ugh I can totally relate. I’m sorry!!! Thank you for responding!!
I’m from Ny too. Grew up on Long Island.
Love the term doctresses!😁
Welcome! Koda is super cute 🥰 Diagnosis and choosing a treatment is overwhelming, but you are not alone. I hope your neurologist is a good one and will let you know the next steps soon! For specific symptoms you may have, you can search this forum for threads and read how the crew here gets on with their issues. There's a big variety here, and a lot of support. For venting, feel free to, this community is lovely 🥰 To learn more about MS, MSAA has great resources online. We are the same age, and I also have a 6yr old. I hope you find what you need here!
Thank you! He makes me feel so old and tired lol
Our son Logan
Our son Logan
Aww, he's a cute elf!
Logan is very cute! Welcome.. this is a great space to get advice, and share what’s on your mind. I’m sure you were going to build a good team of healthcare professionals who will help you navigate what needs to be done to find the answers that you need. I too had symptoms for years before I actually got my diagnosis… I think I was in my late 30s but have had symptoms since I was a teenager. Just know if it is a MS.,It is not a death sentence. It can be very treatable especially if you are able to get on a disease modifying medication early in the game.
If you've been dealing with this for decades already, you've got it down pat. No worries here on out, because you finally have a diagnosis! Yeah, okay; we all wish it was quite that easy. But seriously, my diagnosis gave me the validation I needed to be sick even when I looked fine. It made a big difference towards my outlook on life.
Find a neurologist. If he won't cooperate or isn't a good fit, try another one. I went through several before I found one who was actually willing to work with me. Even if you choose not to go on a DMT, you'll still be able to get high-dose steroid injections when you have relapses. They're not without side effects, but they do help stop the bad spells in their tracks.
Just take it one day at a time and read everything you can find about MS on legitimate sites like this one. Stay away from Dr. Google. And welcome to the club that none of us wanted to join!
For our new friend, a DMT is a disease modifying therapy. 😊
Thank you! Looking back it’s been going on for a while I just really never considered MS even though it repeatedly came up in search results with my symptoms.
Thank u!!
Are you having doubts about your diagnosis? You don't have to be diagnosed to be here; we are happy to talk to you about our experiences. It doesn't take the place of a doctor, obviously, but it doesn't sound like you have had good experiences with doctors.
Edited to add: Sorry. I missed the earlier part where you said you hadn't been diagnosed yet. As others have said, it took a long time for many of us to be diagnosed. The uncertainty can be really hard to take when you're having scary symptoms! But maybe you don't have MS, which would be good! Have you tried a hospital at a university or maybe a big hospital in a city that you haven't tried yet? I live in the suburbs of a major metropolitan area, but my doctor has sent me to a doctor at a university twice when he wasn't sure about something. Don't give up hope.
I’m sorry you’ve had such a frustrating experience with getting a proper diagnosis. You said you are in Washington state…are you in the Puget Sound area? If you are, there are some very reputable MS clinics where you would have a great chance of getting diagnosed properly. Keep in mind that there are many diseases that share symptoms with MS. This is one of the reasons MS can be so hard to diagnose. Neurologists will follow the McDonald criteria to make a diagnosis of MS.
Yes I’m in Seattle but UW has a “great reputation” for absolutely no reason. Look at all the lawsuits they currently have going on. Took out the wrong organ in one guy almost killing him…excruciating pain…Long recovery ahead. One female doctor randomly tried to instigate a fight with me. Every patient got an email telling us to stop complaining and take our business elsewhere if we weren’t happy with the care. So I did lol!! So glad they are a teaching school training future a-holes. Sorry, it’s a sore spot for me. Worse for others I guess. They’re just huge and own this town. Biggest donator to political campaigns Ugh. I live a block from campus and used to go to their clinics. Just disgusting human beings. I go to Virginia Mason now. Not great but much better so far. Original Medicare gives me fewer options as well.
Thanks for trying to help though. 🙃
Yeah…I’m not a fan of the U.W. either. I was thinking more about Swedish. I’ve heard good things about Virginia Mason also. It really matters whether or not you have a good neuro. I used to live in the Tacoma area. For years I had an awesome M.S. neuro at Multicare Neurology. Not exactly an M.S. clinic but he was really great. Unfortunately, he had to retire because of his own health and his replacement doesn’t come close to filling his shoes. If I had stayed in the area, I would have switched.
Welcome to the group. You've come to the right place for support and information. There are amazing people here all with different experiences. I've learned quite a bit.
Thank you!
I was diagnosed in 2011, I'm 64 years old. What I eventually learned is that this is the 'new' me. The old me isn't dead, but is largely in the past. It took a few years to figure out how to be the new me. Something that helped a lot, was joining an MS support group. Meeting other people with MS helped to calibrate me, and to see how others with the same condition are moving forward.
Thank you! I’d really like to find a virtual one!!
Welcome to the group LogansMamaLlama , sorry for the reason. This is a great group with really great people. Share what's going on, celebrate, vent, and ask questions. I was dxed in 2006 after sudden blurred vision. Saw an Opthamologist who couldn't find anything and tried to say it was my antidepressant I had been on for years. After a little discussion back and forth he sent me for an mri of my brain. There were lessions that looked like MS so my family dr referred me to Neurologist who did more mris, evoked potentials, spinal tap, and bloodwork. The spinal tap is what showed that I had MS.
After going through the options of medication that were available at the time, I had chosen Copaxone and was on that for many years (the daily and then the 3xs a week when that became available). I was tired of needles and was runing out of locations to do injections. I asked to be put on Tecfidera and have been on that for about 5 years now (name brand and now generic). I am doing good on it, and as long as my blood work levels stay where they are I will not have to change medications again.
Again, welcome to this wonderful group!
Thank you! ❤️
When I first heard of a possibility of MS, i saw a neuro who asked me to walk heal to toe, and I couldn't keep my balance. He said he was 95% sure I had MS because of that and other symptoms, but would not diagnose it because that would make it hard for me to get medical insurance. After I was on Medicare, I saw another neuro who sent me for an MRI and formally decalared MS for me.
Welcome to the group that no one wants to be a member of, however we all have a wealth of info and experience to share with you. An MS diagnosis can be scary since it is a debillitating, progressive, but non-fatal disease. There are many meds to treat it and slow progression, and I am hopeful for a solution for myelin repair in my lifetime, and I am 75.
Prayers and best wishes to you.
Thank you for the message. Funny, I read it and told my husband I was worried they won’t diagnose me. I’m like, I can do that no problem…look! Then I tried just a few steps and almost fell down. Oops haha. I guess I’ve gotten a lot worse lately. I used to lift weights, dance, play sports, run around like crazy with my son….last year I got A LOT worse to the point it’s hard to get out of bed or do basic things but I’m in so much pain just lying in bed. Sleep isn’t really a thing anymore. I really miss my brain and body getting a break at night. I’m so exhausted but get very little sleep
Is there any OTC pain killer that helps? I’m taking aspirin every 4 hours because I have this secondary foot issue caused by MS sometimes that aspirin is supposed to help with…doesn’t help much though 😯
I see my PCP on the 18th but it can’t come soon enough.
I'm sorry to hear about your Ms. Since I had Ms for a long time I can advise you that Ms is not a terminal illness ,first thing is you need to eat healthy ,you needct to keep active without making yourself very tired ,avoid stress and check with your neurologist the best available treatment and how to boost your vitamin D.You can check with your neurologist whether or not Stem cell therapy is available for you. Wish you good luck and keep strong .
Funny I was oversupp with vit D because in 2020/2021 I heard it helped with not getting COVID. Maybe I should try again but not so much? Thank you!
Your 'fur baby' is cute. Welcome to your NEW home! We have all questioned our diagnoses , We Are Not Doctors, that being said we have been through the gambit of MS. There are several thousand here from around the world & we believe in helping others thru the ruff times & we like to help celebrate too. God bless & keep you always. Mary
Thank you! 🙏
So sorry about your diagnosis, but you are not alone anymore - you have found us. Every symptom you have, every question you would like to ask, every treatment you are considering - at least one of us has been there.
From my perspective, the most important things in handling this condition are your nutrition and exercise. There are a lot of free Zoom classes for MS in a chair (you have an option to stand), including yoga, tai chi and aerobics. Please let me know if you would like me to send you information. Keep us posted on your progress.
Yes, if you wouldn’t mind sending that. I’m having trouble getting out of bed at the moment so I would love to get some movement in at home. Thank you!
Gladly. Feel free to ask any questions.
1) I think yoga is the most gentle type for what you have. There are several companies. The best, I think, is Yoga Moves MS. You don't need to be a paying member to participate in live classes via Zoom (and I never turn on my camera):
You just need to register. They have 1-2 classes via Zoom daily.
2) Then, MS Foundation has yoga on Mondays, tai chi on Tuesdays (the instructor has MS and is currently unavailable due to flare-up until at least February), and some gentle moves on Thursdays. You need to register here to receive your personal link for yoga:
us06web.zoom.us/meeting/reg...
3) There are a lot of programs in MS Dream Center - yoga, tai chi, aerobics, education, art classes for MS:
You also need to register.
I think that's enough for starters. Please let me know if you need any advice or have questions.
I remember how I was bed-ridden when I was put on some (seemingly harmless) eye drops. Had nothing to do with MS. Think out of the box and figure out what is going on. You are your best doctor. I have been misdiagnosed so many times, it's not even funny.
Good luck, and keep us posted!
Thank you for those links! I’m sorry you were misdiagnosed so much. I can relate…18 years of random diagnoses, awful and unnecessary meds, doctors getting angry that the meds didn’t work…yelling at me, throwing their pen at me, blaming me, personal insults. Never once considered their diagnoses were wrong. It was always my fault. That’s why I’m so scared to get involved with doctors again and have very little hope that I’ll get help even with a proper diagnosis. I’ll just have to wait and see I guess. 🙏
I will private-message you via Chat.
Sounds good
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