Hello, my name is Danny and I’m 44yrs old. About 18m ago I started to noticed when running my left leg started to ache more. More recently after a long walk the toes on my left foot would slap down.
I had an issue exasperation with stiffness in both legs, weakness in my right arm and double vision. I was discharged without steroids after 2 days. That was 6 weeks ago.
Since then the have been recovering well but generally my left leg is the same as it was. I have also developed mild bladder issues and some mild brain fog.
I am not sleeping well and feel stressed so I don’t think that is helping. I have a second MRI in a couple weeks but from reading MS Trust etc I think I know what the probable outcome could be.
Any help / guidance would be much appreciated.
Apologies for the lengthy post. Take care and all the best
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Ramdogg
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Welcome, Ramdogg. A lot of conditions are similar to MS, and it can take a while to be diagnosed. I do hope you don't have MS, but please know that while difficult, it's definitely not the end of the world. There are a lot of treatments now to help slow down progression and prevent relapses. People on this site can basically become your MS family, so you've come to the right place. Lots of venting, but also humor, friendship, and helping each other out with advice and support. Please let us know if you have any specific questions, and we would be happy to answer them.
Yeah I’ve had a LP and awaiting results. Also waiting for second MRI. Nothing is certain as you say. At first when I had my exasperation I just assumed RRMS but now I read you can have relapses even in a Progressive condition.
Like anyone I read about PPMS and just seems apart from Ocrevus there are limited treatments to stop progression. RRMS feels like a wealth of DMT available. You find many stories about ppl succeeding with RRMS but it seems far fewer with PPMS. Maybe due to small population size relative etc or maybe I am wrong.
Are there any info on specific treatments etc to slow progression aside from Ocrevus ??
It seems everyone in this forum are incredibly supportive and that is testament to the strength you all have in the face of adversity.
Rammdog, I'm so sorry but I may not be the best person to answer that. Have you checked out stem cell transplants, or HSCT? I don't know a lot about it, but it's worth learning about. There are Facebook groups that would be helpful. Hopefully others will jump in and answer your medication questions for PPMS. I'm sorry you are going through this, but I'm so glad you found us. I'll be looking forward to hearing about how you're getting along!
Welcome to the forum, Ramdogg ! I have PPms and I am on Ocrevus. It seems to keep everything at bay. You can visit mymsaa.org for ms resources. I look forward to hearing more from you. In the meantime, Keep Smiling
Sorry but whereabouts can I find the info you mention ?
Yeah tbh smiling is something I haven’t managed to do a lot of lately. Anxiety has been taking over. I am aware of it and am trying hard to get the better of it.
Thanks again very much. I guess it could still be a while till I get a diagnosis of any sort even after my second MRI.
I have def had an exasperation which has subsided so I assumed this would be RRMS but was unaware that you can have relapses in a progressive condition.
I have mild bladder issues which makes me believe that when I have an MRI that includes the spinal cord then it should show some activity there.
I am clearly not a medical professional but when you read enough you begin to join dots rightly or wrongly
Hopefully, they will not wait too long for any diagnosis, Ramdogg . Let us know when you receive it and please don’t be a stranger on this forum. Keep Smiling!
Don’t focus on what you don’t have, Ramdogg . It’s not always easy, and I struggle following my own advice, but it can be done. I get a lot of help from my husband and daughters when I need an attitude adjustment. I also have a lot of hobbies that I can still enjoy that put me in a better mood.
Hi Ramdogg my name is Mary & I have been dealing with the MonSter for 30+ yrs. It is not easy but you can survive. Hug your wife & children as they can become your best support, you see you don't have MS in any form by your self they are experiencing MS too. Time to sit down have a family conference as they don't understand what is happening anymore than you do. Get some counseling! Ask your Dr. Do you have a pastor? I am praying for you & your family. May God bless you all!
Hi Ramdogg, and welcome to the group. Sounds like you are dealing with a lot right now which is very understandable. The stress of the unknown can be overwhelming. Unfortunately, a definite M.S. diagnosis can take time. Waiting to get tests scheduled, having the tests, waiting some more for results - it's torture. All you can do is hang in there and try to be patient. Answers will come, although not as quickly as you want them to.
Doctors will always tell you that stress is very bad for M.S. so try to avoid it. I always tell them that it's very stressful trying not to get stressed!!! (I try to have a laugh when I can-it helps)
You did say that some of your symptoms seem to be getting a little better, so maybe, if you were experiencing a bad flare up, it is calming down on its own. Please let us know how you're doing and feel free to ask any questions on your journey to diagnosis. You are not alone.
I hate knowing that stress is bad for MS. Like you said, just knowing that adds to my stress and anxiety. But in certain situations, you wouldn't be human if you weren't scared. Dr. Aaron Boster makes great videos on YouTube and he says stress can exacerbate your symptoms, but he's not convinced it can cause faster progression, which is good to hear.
You should check out Dr. Aaron Boster's videos on YouTube. He is a very compassionate guy with a gift for explaining things in a way that's easy to understand.
Almost 40 years ago a wonderful MS neurologist told me that a relapse can happen when under stress and when under no stress at all, so to let that worry about being so anxious go. The beginning is very, very scary, but once you have a diagnosis and a treatment, the fear will gradually subside. Still, I remember that time like it was yesterday, and I really feel for you Ramdogg .
Don’t want to be a kill joy but you’re probably positive. I have the exact same things you’re describing. It’s not the end of the world just embrace the suck and remember your attitude is everything. I have a lot of crap going on but live a regimented life. Sleep schedule, diet stretching exercise basically just moving. If you’re positive it’s not the end of the world. You’ll be fine and I will definitely keep you in my prayers. Hell yesterday I came to visit my neurologist and while I was here, I made my first skydive at 63 with MS it was the greatest experience I’ve ever had in my life. Unfortunately, our main shoot broke and we had to use our reserve shoot. It was frightening, but we got through it. I know this is a little frightening, but you will get through it.
Sorry mate, I’m in a pretty reactionary state of mind atm. I read about Progressive Relapsing aswell. When you say the “same things” are you RRMS if you don’t mind me asking.
I guess I’m also looking for hope in that there are people that come to terms with it, deal with it and thrive whatever type they have.
My biggest fear is mobility issues and how people deal with these. Sorry is that sounds self-absorbed.
Oh and congrats on the sky-dive!! I’m not ready for that for sure
Not at all brother. There is a difference between being self absorbed and focusing on yourself. When I was diagnosed, it was the same time. My son left home and I went on disability and Life looked pretty. I know religion and politics are two things that people don’t talk about, but I cannot hide, my spiritual relationship with Jesus Christ because we’re not for him I would not be here. I realized after my diagnosis and my son left and everything was going to hell and I am basket that something had to change. Easter Sunday of 2019 I rededicated my life to Christ And haven’t looked back since I live every day as if it were my last. Understand about the mobility because I have foot drop really bad. I have an extremely structured schedule waking up at five stretching being as mobile as possible cutting the grass doing whatever eating right And taking my medicines. You will definitely be in my prayers and I know things will work out for the best for you.
Hi, my name is Pat. I started the same way and through a sports medicine specialist I found it was my spine. I hope you have all MRI/ brain-cervical-thoracic lumber. Spinal fluid tap. It can be hard to have a leg cramp etc.. but underlying/ inflammation can go undiagnosed. Trust a MS SPECIALIST and see if multiple sclerosis foundation can give you tips. I would make a journal from start to present. Be your own advocate and keep us posted. We are all in it together! ☮️
My first MRI showed some a focus of T2 activity in the left poms apparently. I have had a LP and am awaiting results. I will push for the upcoming MRI to include both brain and spine.
When I was first diagnosed with MS, I thought I must have PPMS and my neurologist thought RRMS. He turned out to be right, and although my first bad relapse left me unable to work for three months (could barely walk, had horrible dizziness and pain in my head, had trouble talking/swallowing, etc) my symptoms are now controlled very well with Tysabri. Trust your neurologist, if they are experienced/good.
I just remembered that when during my first two years of having MS, I had to quit my job due to fatigue and weakness. I had a lot of tingling, and had trouble walking very far. My neurologist, who was wonderful, thought I had SPMS or even PPMS. He was giving me pulsed steroids every month. Once I quit my job, got a lot of rest, and tried to avoid overdoing it, my MS settled down and turned out to be RRMS. I'm not saying that you should quit your job, but it illustrates the point that even for professionals, it can be difficult to tell the difference. Twenty two years later, I'm exhausted, feel lousy all the time, and I have pain, but I'm still walking and all my parts still work. I know it's hard to wait for a diagnosis, but there's still a possibility that you won't be diagnosed with PPMS.
Hello Ramdogg and Welcome. Many of the Community Fam as I refer to this wonderful, caring group can attest, a definitive diagnosis involves careful evaluation. There are other issues that should be ruled out! This can be a stressful process and “trust and believe” we (or most) of us wish you didn’t have to ponder the “what if’s.” A thorough doctor should make sure you receive the answers you need, appropriate tests and best course of treatment! Praying for feeling better and everything you need. NeeC
I have to admit that all of you have been so kind with your words. I am worried that even after my next MRI that a diagnosis will still be some way off.
on a diff note how optimistic are you that in the next 5yrs there will be further advances that do manage to stop progression in all forms of MS ?
😊😊😊😊Dearest Ramdogg, When I was first diagnosed I woke up the day after having a heat stroke. My legs wear numb and my balance was nonexistent. It was like being drunk, with no alcohol on board. The neurologist did a complete MRI of my brain, C-spine, thoracic & lumbar spine. There was a large white spot in the thoracic area. He pointed it out and said this is the problem. My husband and I ask "What is IT ?". The Doctor replied it could be a tumor, cancer cells, MS or numerous other things. We need to do more tests. After the test results it turned out to be MS. Of the many possibilities that it could have been, MS was not so bad. You can fight it. I think the worst part is waiting for a diagnosis. Please stay positive and don't do the self diagnosis. I was an EMT and EMT instructor so I know about trying to figure out what my problem was. An EMT does not diagnose in the field. That's the doctor's job. I live in a very remote area of Montana. It is 40 miles to town and 150 miles to a doctor. I really do understand the things that go through your mind before there is definite answer. My way of coping is telling myself that this is the greatest thing that could happen. Sometime God taps you on the shoulder and says you need to slow down and be thankful for the day. You are in my thought and prays. I also apologize for being so long winded.😊
Hi, Ramdogg. Here's a positive - we could have leukemia instead! 😎 Seriously, I sort of "knew" before my doctor told me. I still continued to work full time for 3 years. I taught an elementary Sunday school class, sang in a church choir (until our choir director passed away) , & with the help of a rollator, visited my mother regularly down a looong nursing home hallway. Now days, I find that I appreciate the things we often ignored when healthy. Nature, the changing seasons, farmers planting crops, listening to my 16 pound dog snore like a big dog! Small blessings are everywhere. Find ways to be thankful! Keep us posted. Blessings to you.
I’ve been reading the replies to your initial post. I’m new at all of this myself-I do have a diagnosis of PPMS…. So didn’t feel I had a lot to add. But one thing that has helped me is physical therapy. It’s given me confidence, hope, a bit more strength, and a bit more stability. I’ve also always been active, I started having issues with leg weakness/balance/tingling.
So although I may never be ‘where I was’—I’m relieved to see so far for me-it has slowed- I definitely would encourage physical therapy if that is an option for you. Definitely a positive
I’ve had my first dose of Ocrevus—had a lot of fears and anxieties before hand- and time will tell if it does what we hope…but luckily for me, I’ve had no bad side effects
When we can find some humor in some parts of our new situation, it helps but some days it just isn’t fun or funny and that’s ok
Glad to hear you have that booked! -testing started like October maybe and then end of January I had a confirmed diagnosis. The LP was the longest wait-on getting results and then a confirmed diagnosis as a result. Waiting for me was actually worse than knowing
You would like to hear some more positive stories so I will tell you mine. Diagnosed at 29 in 1985. I had some difficult symptoms to start with. Crippling fatigue, wonky legs, a bit of spasticity, the usual eye problems, a whack of the annoying stuff like the MS hug and tingles in many places. These pretty much went away fairly quickly after I was diagnosed. I have had a very easy time of it. After about 35 years I started feeling a slow progression of vibrations, and some more spasticity, not terrible though. After almost 40 years the worst of it is cognitive stuff. I sometimes “forget to think”! Things that would have automatically occurred to me when deciding something just don't and I make mistakes. To look at me you would not know I have MS. I walk faster than many of my friends because I have kept up exercises. My neurologist believes exercise is why I have done so well. Exercise was not a thing, in fact almost the opposite, but I seemed to need a sense of having some control so I did it anyway. I believe it has been a combination of luck of the draw and healthy living. This could be you too!
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