Hi. I'm Julie and I'm going through all the tests to for MS. Would love for people to tell me their initial symptoms that made you talk to the doctor.
Hello: Hi. I'm Julie and I'm going... - My MSAA Community
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KittyLover1971
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Hi Julie! My initial symptoms. ..bottom of my feet were numb, no feeling. Within 2 weeks the feeling spread up my legs, all the way to my rib cage. Everything was numb & I had no feeling. My concentration was lacking. My hips were all off wack so walking was limited. With back pain. I'm sorry if your experiencing any of this. I was sent for brain & spine MRI. Which I had lesions on both. I got 5 days of steriods which helped reduce all my symptoms because it helped reduce the swelling that was within.
Hi Mary. Wow, I hope you are feeling better. I have felt numbness and tingling on various parts from time to time. A lot of dizziness, but could be positional..test for that in 2 weeks. Unsteadiness off and on like feeling knocked off balance. Several times I'm in the middle of talking and i slur briefly. Most unusual are the cool and warm spots that pop up for about 5 seconds then go away. I did have a 102° fever last week from strep throat. My arms and hands were very tingly with numbness and weakness, sort of shaky and felt more unsteady than usual...symptoms dissipated as the fever went down. Does all this sound familiar?
I was diagnosed 2009. So initially those were the symptoms I had. Huge flag to see a doctor. Alot of the symptoms we experience can mirror other things going on. Yes slurred speech, dizziness, ect...we all have different & very similar symptoms. Stay strong & safe, Julie! Sending hugs & prayers to you!
Thank you Mary
I would also like to mention had the Progressive-Relapsing kind and passed away at the age of 50, 8 years after diagnosis.
Sorry for the loss, your statement didn't say who passed away. MS is different for each of us and I hope you try not to worry that will be the same for you. Although I'm a little older than most when I was diagnosed, I am not giving up and Please, try to remain positive through your journey whether it's MS or something else.
Thank you. My father had it...just scared I "inherited" the worst kind.
Very familiar, by late afternoon, my focus, balance are pretty wonky, and symptoms temporarily increase.
My first symptoms were memory loss and tremors....kind of strange symptoms. I didn't even notice the memory loss, my family did.
Also, I hope you find out either way quickly....good luck!
Thank you
I had that too. I also had right side weakness. I had a weird episode in High school after the first hot baseball practice, the left side of my body went numb and painfully tingling. I was 14! Fast forward to 20, I had a back injury on a hot July day lifting heavy tires. I had back surgery at 25 and while lifting weights some days I would be down 50lbs. On bench press! My right arm would give out for no reason. Age 29 lumbar 2 level fusion. Took so long to get I had permanent nerve damage. 2 strains of staph, scar tissue etc.. Took forever to heal. Workers comp sent me to a work hardening program where we stayed at the Motel and were shuttled to the clinic. Some guys there wanted to go hot tubbing, after 10 minutes I was paralyzed from the chest down! The guys pulled me out and helped me to a chair, it was 45°out so I cooled off fast and my neighbor helped me back too my room. The next morning I was weak!! That was 2006. It took until 2009 to get my doctor to think about It! 2012 DX'd!
I had a probable CIS (clinically isolated syndrome) about 20 years ago with migraines and then episodes of aching in my legs for years. I developed pain in my right hip and lower back and numbness and tingling in my left arm. That’s when my primary doctor (aka PCP) ordered the MRI. Though my spinal fluid was negative, MS seemed pretty obvious. Symptoms changed throughout the relapse, but what you describe could fit in with MS. That being said, it certainly doesn’t mean you have MS.
I’ll be praying for a clear diagnosis so you know how to proceed. Please let us know what you find out.
Be sure to check MSAA for more info:
Thank you, I will.
Thank you, I will.
I woke up one morning on October 6, 2015, numb from my hips down to my feet butI was still walking. I went to a neurologist and after a few MRIs I was told it was MS on October 29, 2015. I started to stumble and fall and on November 10, 2015 I was paralyzed. For 2 months. I went to three hospitals and a nursing rehabilitation center and finally home on January 12, 2016. It was an experience that I do not want to do again but it made me stronger.
My gait was off. I walked like I was drunk
I started having carpal tunnel like symptoms in my legs & feet, my left leg was dragging & was having left eye peripheral vision problems. -Kris
Hi KittyLover1971 my symptoms were unsteadiness, dragging my right foot, tingling under my toes and dizziness. Lovely to meet u from the UK 😊😊😊😊😊😊😊 xxxxx
CalfeeChickCommunityAmbassador
Hi KittyLover1971 First of all, a big Welcome to our group. I believe you will enjoy reading along, asking/answering questions. Keep on coming back and let us know how you are doing. My initial symptoms began one evening just after dinner. A burning, itchy feeling on the lower right side of my back. Thought I might be coming down with mild case of shingles. By the next morning, 4:00 AM, I was numb/tingling from my rib cage to my toes. I thought maybe I'd had a stroke. Hubby took me to ER. After hours of test and no conclusions, we went to breakfast, by the time we finished eating, I was numb/tingling on both sides, rib cage to toes. We went to my orthopedic doctor, who saw me immediately. X Rays, lots of tests, MRI the next day of spine, No results. It took 5 weeks to get into local Neuro doc. Again, lots of test and MRI of brain only. He "called" me, said you have MS, gonna start you on Tecfidera (even though I am JCV Positive*). Told me not to get upset, I've had long life. I had just turned 68 at the time. Fortunately, I found a great group of doctors at a MS Clinic, associated with a well known teaching University. I'm almost 70 now and am taking many medications that help reduce the symptoms. This forum has been a "lifesaver" for me. Great people here, but also there is so much information on the MSAA site. Do a little Exploring and you will find many answers and information.
* JCV is John Cunningham Virus, when you test positive, it means somewhere along your life you were exposed to it and your body built up antibodies to it. Being positive and taking Tecfidera and 1 other med can potentially lead to a very serious brain disease
Wow, i just found out i have Epstein-Barr virus antibodies
Hi CalfeeChick it's Tysabri the DMT I'm taking and I'm also JCV positive but very very low and have my bloods done regularly. It is what it is I'm afraid 🤔🤔🤔🤔🍫🤔
Regarding first symptoms, my first was optic neuritis, but I tend to ignore a lot. After a couple bouts with optic neuritis, the neurologist started looking further and telling me those other things I've been ignoring or simply pushing through may be related. Yes I had tingling.... That was MRI time, yep, you got it I was told......Have had it since for decades, almost. Some very wild and strange symptoms exist, beyond the ability to locate bathrooms like a radar. And, I've gone through in those days all the DMT's, those you had to learn to self inject, and for me, have flue like symptoms forever, easing only hours before your next injection. But, now the bright side: I was finally told to stop the DMT's, as they weren't really helping me anyway, and why suffer from them. Years of building up a war chest of drugs, after which I realized were mostly needed because of side effects of other drugs. Now I'm on nothing! Over 5 years without a relapse! Still have battle wounds, but even those are getting better. Not saying don't do drugs (the DMT's), but DO look into nutrition. After coming back from the dead, (I got so bad I felt like I was half comatose). If I ate, it made my comatose state worse. But I needed nutrition, first by essentially only juicing for a couple years, then Vita-mixing for almost a few more. I'm now on healthy real food. No processed foods, nearly all fruits and veggies, with small sized portions of lean meat and fish. Don't forget the seafood! Something really good has got to replace the pizzas and pasta. My treat is seafood! But since the focus on nutrition, I'm making progress, and actually healing some of those items my doctors told me were permanent, such as loss of vision due to optic neuritis 7x.... One can do it! More and more focus is going into nutrition as a cure these days for so many auto-immune diseases.
I was just diagnosed most likely to have prostate cancer based on ever increasing PSA and "velocity" (rate of increase), along with now high levels. Did research...and just came to terms with going for surgery, replacing my fears with peaceful acceptance. All the men in my family have had it, survived it, or died from it. So.... Just got my 4 month PSA retest back, back down to "safe" low levels of over a decade ago. Doesn't mean there still isn't a problem, and I will be retesting again monthly for a bit, but I'll keep up the diet and daily pomegranate juice...everything else I've already been pretty prostate healthy about on my MS diet.
My MS..., I walk with a cane. But I also walk a minimum of 5 miles a day, wearing a fitness tracker. I could barely get out of bed for years, and when I did, I was just like a walker from The Walking Dead. Now I can do 10 miles if I have time, and other than a sore shoulder from the cane, I feel great!
Time to reboot your life starting with eating well. Really well. Not just a little bit, but fully dedicated to the cause. Now, I love to pass on my success story to others, and hear from others doing the same. I sell nothing. Just urge you to look into this.
You're an inspiration! I love that you are walking 5-10 miles a day and that you are making a conscious effort to eat well. Thanks for your post!
MarkUpnorth You are definitely inspiring! I love that you add in some giggles along with your description. Will pray that you continue to get 000 PSA test results. My husband also had the same cancer and will be cancer free 6 years in July, he tests at .o1. And Yes, almost every MS'er knows where every bathroom is along any route we go. Even around town. Myself included. You are doing awesome!
KittyLover1971 My first symptom was the sudden blurred vision for no reason. Saw an ophthalmologist who tried to blame meds I had been on for years. He finally sent me for an MRI of my brain which showed lesions consistent with MS so my family doctor referred me to a Neuro who sent me for all the testing to make sure it was MS.
Jessie
I kept falling. I fell down stairs (twice) and THROUGH a table. Finally fell off a bike. My legs just stopped working! I froze and toppled over. My shoulder, then my head first hit the bumper of a parked truck, then the pavement. I broke my upper arm in 4 places and had a concussion. My family dr. sent me for an MRI after I told him I kept falling. It showed lesions upon which I was sent to a neurologist who did the lumbar puncture and diagnosed MS. My initial feeling was relief because it explained what was happening. A few days later I spent the entire day in bed bawling. Then I got up and kept going. As I look back even before that year, I cannot remember the last time I could run. I was diagnosed 4 1/2 years ago.
Glad you survived the crash. I spent many days in bed feeling sorry for myself, then had a wonderful call with my pastor and we gave it to God. Then started researching on all the ways to help myself. I was a long distance cyclist before I just went numb. Cycled 150-200 miles a week. Even the morning of the evening I went numb rode 40 miles as a fun ride. Will remember that last ride forever as I don't think my balance will ever allow me to ride like that again. I've found other ways to fill my time. Lots of crafts and reading. And this forum has become my family I get to choose!
The MS Society paid for a recumbent trike for me. I can go out with my family and enjoy myself with them again without worrying about falling. Actually I like it better than a bike. They are unique so people talk to you. I have met many people because of my trike. You should look into them!
I knew they did a lot, but didn't know about getting a recumbent bike. May have to check into that. Of my life before MS, I miss my cycling the most. I found a guy that will build an adapter for my road bike, but $3000. is out of my league these days.
Mine is one of the lesser expensive ones, which is fine. I'm not racing so it's fine for me. I can't remember how much it was. They send you a check made out to the bike shop. If you get their tax ID number, you can avoid paying tax on it as a charity is purchasing it!
I think I will look into that.. I hate looking at my road bike collecting Dust.
Let me know how it goes!
My first symptoms were numb legs, I lot the ability to swallow, lost fifty pounds in a month, and progressed with the weight loss to not being able to move my legs or left arm.
Hi Julie, I woke up one morning with almost no sensation from my knees down, just a vague tingling like they had " gone to sleep " except much more intense, and long term, then there was the spasticity, didn't know what it was called then just thought it was weird cramps that wouldn't go away. While this was going on my son was in the ICU at the hospital so did nothing for over a month till he was better, then thought i'd better find out what was going on with me, that's when I saw a neuro. for the first time. ( just the word neurologist scared me) best of luck robert
Hidden I hope your son is much better now and you too. I was a long distance road bike rider right up until the day I went numb. Not quite 2 years ago. How are you doing now?
Thank you my son has fully recovered, That was ten years ago now, I too was a distance road bike rider, ran a road bike club and bike co-op, but am only able to ride marginally now and don't do organized rides anymore. too many balance issues to be safe in groups. modified recumbent so i can keep my foot on the pedals but no where near rider i once was. do you still ride? how are you doing in general?
No, I haven't ridden since the day I went numb. Now because of balance issues, I am afraid of a fall. We've been having beautiful weather and I'm getting itchy to ride. I think I'd better ride some spinning bikes at the gym first. Wow, you must be very knowledgeable about all things Bicycle. I'm still part of my cycling group and often drive as a "sag" driver. I can still change a flat, etc. I was blessed to be able to ride the California coast, Santa Cruz to Malibu many times and went this last year as a support person with our group. We had to change our route because part of Hwy 1 was washed outl I saw a road bike adapted to a 3 wheeler last year and got the information of the builder and took pictures for my bike guy. I'm seriously thinking of having my bike adapted. Gotta find the funds first. As far as dealing with MS, I'm doing okay. Gradually symptoms increasing. I take "symptomatic meds" no DMT meds yet, but thinking about it. I try to stay upbeat most of the time. I keep myself busy. I do have times when my balance is really goofy, my brain is tired and easily distracted. As you can tell, I got all excited talking about bicycling! Hope to chat with you again.
• in reply toCalfeeChick
Love bicycles too, rebuilding a drive wheel for the recumbent this season ( the old one starting to show stress cracks in the hub) of course i have to wait for "good hands" days so that i can feel the liitle spoke nipples and manage the close tolerance work. And yes i fell a lot when first riding ad (after diagnosis) but i eventually found ways to reduce falling. highly dependent on vision intense visual focus, as my inner ear stuff is all out of whack. hope you keep trying the scrapes and bruises heal, not sure about the ego but still trying
Hello and welcome KittyLover1971 from Fancy1959. I am sorry it has taken me so long to reply back to you but my notebook has been on the fritz. But you need to remember is that no two persons fight or disease with this monster, we call MS, is alike. About one year ago I made a post concerning pitfalls that newly diagnosed patients with MS look for. The older people in the group with Ms for years put this together because our doctors and support staff did not mention any of this to us and we fell into these pits with concern and upset because we didn't know they were coming or how to deal with them. Once I finish talking about common symptoms I will go and get the exact title of that post and come back to you and tell you the title to go to and read. and read.
Here is a list of of possible symptoms that some people can experience with MS;
1. Balance issues. Light for some people and totally debilitating with others.
2. Tingling or numbness in some parts of the body. This can be mild for many people and can also be extremely painful for others. For myself I am blessed with no pain but sometimes discomfort from my elbows to my fingertips and lightly on my feet.
3. Lack of fine motor skills in the hands. My hands have been hit very hard and my dexterity is down to about 25% as compared to healthy women my age.
4. Cognitive issues can be mild to severe
5. Speech issues which are directly related to the cognitive issues.
6. Incontinence in both bladder and bowel.
7. Spacidity of your muscles.
8. Eating and swallowing problems for others
The list could go on and on but I'll stop it there. Some people are in pain with their tingling and numbness and muscle spasticity but many of us are relatively pain-free except when this monster knocks us down.
What sent me in to seek a diagnosis was a weakness to my right side in both my arm, hand and foot. My balance started to become more of a challenge. And when it finally popped its ugly head up severely I was laid flat on my back by MS and basically couldn't get out of bed for an entire week. All I wanted to do was sleep. My right hand felt like it was swollen ten times its normal size and it became club like. I couldn't use it at all and if I tried to touch my face with it, all it could manage was to slap myself with my hand. I was started on a large batch of steroids and testing was started. Steroids got me back up on my feet in a few days and helped me to gain some control of my symptoms and I was able to return back to work. Good luck with your testing. Although I would love to welcome you to this chat room I do not wish MS on anybody.
But if we do need to welcome you into the family due to the testing results revealing you have MS, I want you to understand you have found a safe place to come and voice concerns, ask questions, and truly speak to others who understand what you are going through. This chat room is full of some of the most caring, kindness, and compassionate people I have ever met. So please keep us informed and let us know what your testing reveals. Until we speak again take care of yourself. Fancy.
Thank you very much. I'm scared I'll inherit the same type my father had which was Progressive-Relapsing. Do you know anything about that?
Hi KittyLover1971 my first system was when I was shaving my legs and I thought to myself that I really cannot feel that as well as I should. Hope that helps.
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