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MS diagnosis

Hi guys

Just been diagnosed with MS today at 47, still in shock although kind of expected. One episode of what I now know was optic neuritis,9 lesions on MRI, some tingly sensations in extremities & tinnitus, but nothing else major! Only found out by accident after having a seizure last year & an routine MRI as part of that follow up. So also had a diagnosis of Epilepsy ...phew it’s a lot to get your head around. Will be great to hear from others who have been there & got the t shirt ;) Lynn

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Peetzil, I'm so sorry to hear about your diagnosis! I haven't been diagnosed but the last 6 years of my life has been living hell. I have an appointment to see a new Neurologist at the beginning of March. The other 2 Docs thought I had Giant Cell Arteritis (GCA) but after a trip to Cleveland Clinic, the Rheumatologist diagnosed it as "Neuralgia" or "Trigeminal Neuralgia." For years, I suffered with some really strange seizures which were non-convulsive and only happened when I was eating the largest meal of the day. If you feel up to it, can you explain what eye symptoms you were having? The pain behind my eyes is off and on everyday and when it is "on" it is extremely unpleasant. I know it is a lot to digest. Please know we are all here to support you! Take care!

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Hi @micheleinnaples sorry to hear that😕 yeah my eye just felt heavy, and my colour vision was faded in that eye. It was on and off for a few months this strange feeling, I went to opticians and eye was fine they didn’t have much to say about it, that was prob Feb last year then beg May I had a grand mal seizure in the supermarket! I have had another seizure but that was 22yrs ago & all investigations were ok then. No medication etc. I didn’t even go to my GP about the eye as it was more annoying than anything else, and I didn’t think it was significant. My neuro referred me for a Visual Evoked potentials year and this showed slowed nerve responses in both eyes, so he said that indicates an episode of optic neuritis. Hope that helps? It’s all settled down now, not had that feeling again since about Aug last year. Best wishes to you in your search for a diagnosis xx

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Hello Lynn sorry to hear about diagnosis but don’t let the news get you down too much. There are worst things out here and more dangerous. You’ll get nothing but support here.

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Thank you Royjr 😀thankfully I am feeling well at the moment & absolutely agree, many worse things!

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I just read that you found out you have MS so sorry for that the first year in shock end it lingers for a while just listen to your neurologist. Do your reading on the disease so that you will know what your neurologist is talking about. When you go to your neurologist have a list of questions you will have even if you think it’s something small it isn’t it’s better to know what is coming at you because you will get the correct information from your doctor

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Thankyou, I’ve started my research already😉

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We always hate hearing that MS has affected yet another person, but are so glad you found us. Though we are all different in how MS affects us, we are able to share with one another and give lots of support and information.

mymsaa.org/ has numerous helpful articles for you to investigate, and I highly recommend going to the site and taking advantage of it. There is so much to learn, and it may seem like drinking out of a fire hose, so having a reliable source of information and lots of support really helps.

We look forward to getting to know you better.

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Hi thankyou I will definitely check the site! Seems like a lovely supportive group here😊

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Welcome! You've come to the right place. I've also had the same symptoms (plus some). Has treatment been discussed?

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Hi thankyou kdali! No not yet. My regular neurologist has referred me to a specialist in MS but don’t see him until 20th of March. 2 more MRI’s with/without contrast, before then too, so he can see if any difference since Nov.

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Oic! Let us know how it turns out. Hopefully no new lesions.

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Cheers ! Will do 😊

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When I was first diagnosed I was fine then everything I had read from the good to the bad would just surround me all at once. If that happens to you please just pick one solid thing in your life , focus on it and BREATHE. You couldn't have joined the club at a better time. Amazing things are happening pretty quick these days@!!! Xxoo

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Yeah I feel a bit like that, it comes in waves of reality shocck😬but I’m a very positive person so taking every day as it comes & grateful for what I’ve got 😊

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Welcome to the home of the crazy MS community 😜 What a great place to vent and receive great information about the monster👍 I have had rrms for twenty three years and still upright 😉 I went to bed one night and woke up blind in my right 👁. I owned a Autobody shop at the time and thought I got a metal sliver in it. Went to my eye doctor and could not find anything 🤷🏼‍♂️ My uncle called his buddy of his that was a specialist and he took one look and said I had MS lesions in the back of my eye 👁. Scheduled me the next morning at Moran Eye Center at University of Utah and they confirmed and set up spinal tap next day. It was positive also😢. So welcome to the group 👍😉🐾🐩🐶🙏Ken

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Hi 👋 thanks Kenu oh what a shock diagnosis for you back then! Cheers for the welcome, it’s lovely to connect with others & has made me feel a bit less isolated already😊

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Good evening Peetzil and welcome to our extended family from Fancy1959. You have found a safe place to come and ask questions, voiced concerns, or simply speak to others who truly understand. This chat room is full of very compassionate, caring, and kind individuals who will share everything they know about their Ms and the journey it's taken each of us.

When I was still working full-time and under immense stress from the position I held, I showed signs of having some pre seizure activity by fainting and being disoriented and wobbly at times out of the blue. The day that I got the diagnosis of possibly starting seizures is the day before I quit work. I simply wasn't going to let work kill me. Seizure activity created a whole new level of disability that wasn't prepared to let roll over top of me if I could help.

If you need anything we are only a post away. So please keep in touch and let us know what you are currently fighting and where your diagnosis late until we speak again please take care of yourself and remember together we are stronger!

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Hi Fancy1959👋thankyou, it feels comforting to know people are there in similar situations & that so many have taken the time all ready to reach out & say hi😊it’s really helped and I look forward to learning from you all in the time ahead.

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Welcome to this wonderful group Peetzil Sorry for the diagnosis but y ou have found a great group of people that are caring and supportive. I was diagnosed in 2006 after my vision suddenly went blurry from stress of trying to buy my house. After testing I was diagnosed quickly but it was the scariest time in my life because my Neuro never told me possibilities just flat out told me my diagnosis and gave me litature on meds available to choose from by my next appt. Things today have come so far with med choices/advances. Please keep us updated!

Jessie

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Thankyou for the welcome helloJessie, I will keep you all updated😀

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Peetzil , I am sorry to hear about the diagnosis but glad that you found this group.

Take it slow, give yourself time to adjust and remember not everyone has the same symptoms or the same severity. Do not believe everything that you see online. Please check out the MSAA and the MSSA websites (I hope that I got those right) they can give you the most updated information. Other reputable web site are out there, like the Mayo Clinic and the US Government Health. Ask here also because even though we are not doctors we have lived with MS. There are people who have recently been diagnosed and those who have been living with it for many, many years.

I hope that you have a good day!👋

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Thank you morllyn. 😊

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Hi and welcome! I was 44 when i got diagnosed. Three years ago. It was a total shock but my neuro was awesome and has helped me immensely. I know how u feel wen u first get the news and the roller coaster that is ahead. Most of my lesions effect my eyes and it can relate to the color blindness and eye pain. I also get vertigo and dizzy spells

Best thing u can do when weird stuff starts to happen is reach out here to others that understand and have been thru what u r going thru. They may not have all the answers but the support is priceless. I still consider myself a “newbie” and find myself coming here a lot for advice and support. Its awesome

😁😁💜💜

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Thankyou @midgey_midge06 I’m sure I will do that too, you are right about the emotional roller coaster😆

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Its hard. At first you are grateful to have a name to go with your symptoms. And grateful its not something worse.

I wont jinx you by telling u abot the rollercoaster that came for me after that. But if u need someone to talk to when it does hit u - u can always message me and i will be there for u

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Thankyou😘

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Peetzil: Welcome to the group. As you probably already know MS comes in many shapes and sizes. Keep doing what you can. God's Peace and strength 🙏.

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Thankyou💓

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Oh, Peetzil. I'm so sorry to hear about your diagnosis. I guess it's a good news/bad news situation, huh? Good news is you have a name for what's been going on, but the bad news is that it's MS. I completely understand it being a lot to wrap your head around. You'll find a lot of support from the people on this site. For me they've been a God send. Wishing you all the best.

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Thank you Ynggal, it has already made a difference. I looking forward to getting to know everyone 😀

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Hi Peetzil , you came to a great Website. I like to read and I suggest that everyone reads MS Maddess by Yvonne deSousa. It is a good read and it has a little humor in it. I related to it and passed it on to family and friends so they can understand what I am going through at times. Hope you are getting the information and medical help to make your journey acceptable. Welcome 😊

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Hi @Babslover, thanks for the book recommendation it sounds good! Because I look fine I think my F & F think there’s nothing major wrong! But I guess it’s good in a way as no obvious disability at the moment. One good thing the MS diagnosis has made me almost forget about the Epilepsy one which came a few months before!!! Got to smile😄thank for the welcome x

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Hi Peetzil...I'll echo what someone else said about being diagnosed with MS...sorry to hear that... but there are worse things. I was diagnosed with RRMS in 2001 @ age 52. Optic neuritis sealed that dx!! Weirdest thing I'd ever experienced!! In retrospect, there were 'signs/symptoms' for years, probably. I just 'adjusted.' I'm sort of a 'well, here we go' kind of person... which is exactly what I said to myself. I took Copaxone up until I transitioned to SPMS some time in 2011-12...I don't really know, exactly. A move & finding/seeing a new neurologist validated the 'change.' I'm relatively new to this 'group'... finding it is another way of knowing I'm 'not the only one' that experiences some of the craziness of MS. Welcome to another day!

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Hi @suznj325, thanks for your reply it made me smile. I am that kind of person too I’d say. Just starting out on the journey & most times am fine, sometimes not so much. Physically I’m good, so I’m grateful for that & will take each day as it comes😉

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Peetzil hello, I was just reading back on older posts and saw yours. How are you feeling after your diagnosis and it's been a while? It's been a little over 2 years since I first went numb. I was DX in Dec. of 2016. I still have times of denial and others of slowly acceptance that my life will never be the same.. Have you started any MS drugs? I take what's called "symptomatic" drugs to treat the symptoms of numbness, tingling and muscle spasms in my legs and even in my toes! That's quite an experience.. Charley Horses in your Toes!! Hope you are doing well, we are here for you to try to help answer questions or direct you to many of the services or information MSAA has to offer. Lynn aka CalffeChick

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Hi CalfeeChick yes I am well. My specialist Neuro who I saw a month after the diagnosis of MS changed it to Radiological isolated syndrome, as even although my VEP was abnormal in both eyes, he didn’t think this was ‘significant ‘ enough! I still have the constant tinnitus & some odd sensory symptoms that come & go and are more annoying than anything else, but again as they typically last less than 24 hrs, he brushes them off. They are buzzing in my leg, tingling on a patch of skin, twitch in my ribs etc! My MRI thankfully 6 months after the first showed no new lesions and none in my spine.😀I am still running regularly atm & trying to make the best of things. I have also just got my driving licence back after 14 months, following the Epilepsy diagnosis!!! It’s like getting your wings back. Thankyou for taking the time to check in with me, I’ve put the MS to the back of my mind I guess, my way of dealing with it. Hope you are well 😊peetzil xx

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Thank you for your response. Even though you are dealing with allot, it sounds like you've a great attitude toward everything. Best to you! And yes, I'm doing as well as I can. Blessed everyday when I wake up! 😊

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