Okay. I see my neurologist yesterday and have no answers. She says my MRI I'd "very good" but offers no idea on what else she's looking for. She's scheduling s carotid ultrasound and I go back in a month. she upped my neurontin to twice s day. She hasn't ruled anything out but now I'm really wondering what's going on. It's my fault I didn't get more information. I should have asked her if the MRI results ruled anything out besides s brain tumor. I made the mistake of taking my husband along. He has a lot to learn about what's helpful and what harmful.
Does a "good" MRI rule out MS? Because my balance hasn't gotten any better or anything else. .I have an appointment Monday with an ophthalmologist on Monday. I still have a headache and eye pain so we'll see if anything odd shows up. I know my close up vision has declined rapidly.
There has been pain relief with the neurontin so I'm actually able to be more active but it's a struggle to actually get past the lethargy to do it. But I'm forcing myself as much as I can.
I'm frustrated as I know everyone has dealt with symptoms for years before getting a diagnosis. My muscles stay rigid in my neck and shoulders which gets worse when I'm using my walking stick when I'm out and about. And im getting frustrated. If it could be lyme disease or something that can be confirmed by a blood test why wait? O had really hoped she would have said well it looks like xyx but we need to delve into it deeper. I never put all the symptoms together until I was looking through a fall risk assessment and rated in the top range so I wouldn't think it's psychosomatic. I hope the next office visit is more informative. Illness sure yo have my questions written down as well as any changes in physical symptoms. enough venting. I hope everyone is having good days and staying warm and dry. The world out there is not welcoming today.
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Sassysmom
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Good morning and Happy Valentine's Day. I am new on this site and new with all my body is going through. I just felt compelled to write to you (like others have to me on this site).....
HANG IN THERE! Try to stay positive and hopeful. You know your body better then anyone else does. I know for me, what I felt like four months ago to now, is alarming.
There has to be answers and help out there! So prayers and positive energy sent to you.
Thank you. This has been a stressful 6 months. I know this can be a bumpy road to a diagnosis but I really had my Hope's up that she could completely rule it out or at least say it's a possibility. But I'm taking care of myself and hoping for answers. This really is a great group of people.
Was the MRI only of the head? Has there been no cerebrospinal fluid analysis via a lumbar puncture? What did the nerve conduction tests show?
Don't be afraid to ask for a second opinion if at all possible. Diagnosing MS can be a bit of a process, since we have to rule out other problems, too, and most doctors want to be very thorough before making that diagnosis. I'm surprised that after this much testing, you still have so suggestions about what is going on.
Please keep us posted on what is going on with you and what you find out. We understand the frustration, so vent as much as you like.
The MRI was only the head. Next is the carotid ultrasound. While she really isn't as free with her opinions as I'd like I was kind of in shock to realize there were no answers yet.
As for the nerve conduction test. Well, she had to increase the intensity on one leg to get the responses she needed. Like 10 clicks to get the response. Right leg I could feel the charge from my leg through my foot to my toes. Left leg, which is the one she had to increase the intensity on. I felt the response to the ankle with no feeling on top of my foot and then felt it in my toes. She did both the nerve conduction test as well as the velocity test. Neither were pleasant but I thought my husband paid her to electrocute me.🤔
I honestly thought she would say well it might be MS or it is clearly ruled out. I see the ophthalmologist Monday for an in depth eye exam. Maybe there's something there that might be a factor.
I am assuming that she's trying to do noninvasive tests hoping she won't have to do a lumbar puncture.
Dr B is very highly respected in this area and I really do like her. But as soon as I walked out of her office I realized I need to ask the questions about what the tests did or did not show. I'm really not used to being the patient. And I'm realizing I'm not a very good one.
Thank you for your support and advice. This journey is like walking on uneven ground and trying to bend over and pick things up without my walking stick. I'm trying not to fall while stumbling around.
Sometimes it takes a little while for you to process everything you were and were not told at each visit. Just write down your questions and take them with you to the next visit.
Thanks, I'm definitely slow at processing everything. I feel like I'm a blind person driving a bumper car. Everything just feels like one more bump and you have to sense where to go.
When I was sent to the neuro for the numbness in my feet to have the nerve conduction test he first did a complete neuro exam and asked about all of my symptoms. I also would get foot drop on the right if I exercised for more than 45 minutes but had just stopped exercising for more than 30 minutes so it wouldn't happen (good old denial).
After the neuro exam he knew that it was a central nervous system problem and not a peripheral nerve problem because of how abnormal my reflexes were. He didn't bother with the nerve conduction test. I had a MRI 6 days later that showed MS lesions then on to lumbar puncture and visual evoked potential the following week.
Maybe it is a good sign that she is doing other testing. If your carotid arteries are clogged they can fix that.
I was very overwhelmed due to knowing how abnormal things were on the exam (I am a nurse) and frightened when he said it was a central nervous system problem. I didn't even ask what all the potentials could be. I think it was good because it put me in the mindset that MS is the best possibility of everything it could be.
I thought the carotid was strange until I did some research on it. I've put the link below. It's actually too technical for me to understand all of it but it does help to understand why the carotid ultrasound might help. My last cholesterol test was excellent but I can't say that for past tests. I'm a retired LPN but I've lost the comprehension I used to have. The brain fog is a bummer. But it has made me a more empathetic person. I now advocate everywhere I go online for nurses to be kind to themselves and to keep a log of odd things that happen. I wish I had a list now with dates on it. It would have made it so much easier to see when it began although if my memory is correct the first symptoms were in 1998. But I blew everything off as happening because I was tired or the floor uneven. Denial is not just a river in Egypt.
I hear you a ton. So many questions we all have I’m trying to take the high road and try to be positive and proactive,after to hearing others on this site.
This group makes it so much easier to navigate the journey. There's quicksand and wild boars and flying monkeys that scare the crap out of us and hearing that someone else has been there, done that an come through it definitely eases the stress. Thank you.
yes it is very stressful not to know and don't blame self for not asking more questions ..we all have been there and it is so maddening to not get the answers we expect from the doctor but again you do want the correct one ...so try to be relax and for being so stressed doesn't help either and can make you feel a lot worse for making more systems ...thinking there are ....take care and keep thinking of things to ask or even go on the doctors web page for the patience to ask or leave a message about how stressed you are for not getting more answers ....take care and don't stress so much ...enjoy life and ha Happy Valentines Day ....just enjoy the day ....love and much happiness....
Thank you twooldcrows. I went in to the appointment really expecting her to say it is or it isn't MS. If the MRI was good I assumed that meant no lesions so no signs of MS. I understand the carotid ultrasound is to check the blood flow to the brain but I had one done 18-24 months ago and it was clean. And my cholesterol levels are great now. I just received 3 books on MS I ordered so I'm looking through them to see if there's anything useful there. And I have a book on living with chronic illness that I need to pull out and reread. I'm like so many people that a diagnosis is better than the unknown. I'm really grateful that there was no signs of a stroke or brain tumor. And I don't want a chronic illness. But denying there's a real problem isn't going to help me so I don't even go there. I'll keep the updates going. I'm still learning to navigate this site.
Hi Sassymom! Seems i cannot stop thinking about you and your situation. I too went through "limbo" knowing something was wrong, but not presenting in test/exam results as clearly offering a diagnosis. I had a renown MS neuro too. At least his PA knew something neurological was going on. But after 4 years of MRI showing no MS lesions, but plenty of other lesions, my Neuro said, NO you don't have MS. I was devastated.
I too had horrible balance issues, tingling, numbness in face, cognitive issues, eye pain and others i cannot remember now, and nothing.
Left his practice and started having other diagnoses. Eventually was having seizure like signs which brought me to another Neuro who wanted to put MS back in a working diagnosis. FINALLY the MS, oval shaped lesions appeared and was sent for a 2nd opinion. Said I had a few MS lesions and many many other type lesions.
Neuros really depend on those MRIs to clench their diagnosis. It is important to Rule OUt other mimics.
BTW ask your neuro to consider giving you Baclofen for your tight muscles. Be ready to learn that it can take awhile to properly diagnose you. My balance still is not good but improved. I use a cane for balance issues. AND my 'other' disorders confuse and interfere with my MS so yes, it gets confusing to these providers.
Brent are you sure you're not my doctors in disguise? I'm still trying to wrap my head around a plant based diet. I mean seriously, I buy second hand clothing and it's still good as new. If an animal eats a plant based diet doesn't his meat count as plant based? Seriously though I've cut way down on meat. I never eat steak or pork chops which I dearly love. And I use 1/2# of ground beef when I make vegetable soup and chili. I'm low on phosphorus so the renal doc recommended yogurts and cheeses. I stay away from sweeteners most of the time and since I only have 2 cups of coffee a day I use raw sugar at 5gm of carbs. J really am having a tough time with the plant based diet when diabetes calls not to eat something st the same time ckd says to eat it. I feel like the ping ball at a world championship game. Thank you for the advice. I'm making a list of tips.
We can only do the best we can Sassy🙂. I think you are doing great to me because of all the things that hit you. Denial is never your friend sweety. Stand up tall and hit it square in the face. I say this so everyone can see it. If you wouldn't have put it off you may have slowed the symptoms down....maybe??
Anyhow I was wondering where you live and what Doctor's you go to?? Your Neurologist mainly. I live in Oregon and am not having much luck at all. I have been to 7 Neuro's from the Mayo Clinic to U of Washington and Oregon. So I have a good PCP and Oncologist but need a Neurologist. My Endocrinologist is a mess but I don't have any choices there either. Salem, Oregon has terrible Doctors as a whole.😢 It takes 4 months to see the ones in Portland. I just went to OHSU Neuro #8 I waited 6 months.
If you are close to a nearby university with a good neurology department, you might want to self refer. That's what I did after trying to get my PCP to listen.
When I went in for consultation they ordered blood tests for all the tick borne diseases and vitamin deficiencies, MRIs and a spinal tap (LP) as well as looking at my spine and watching me walk. Though at first the neuro thought my symptoms were caused by spina bifida occulta (spina bifida that was closed rather than open), within a month the confirmed diagnosis from MRIs and LP was MS.
I'd had Optic Neuritis as my first symptom 20 years previously but a patchwork of doctors never mentioned MS, even when I began stumbling, tripping, falling and experiencing continued vision problems, numbness, and on. Since then I have also discovered a great variability in the competence of neurologists: some are great, some are good, and others are mediocre.
I thought about University hospital but both my nephrologist and neurologist have privileges there so I really don't have concerns about that. I just had a very thorough optical exam and there's no sign of optical neuritis. Which I'm very grateful for.
I'm dedicating a notebook for questions and answers for my doctors. I don't see my family doctor until April so I'm making notes on what to ask him. This has been 3 life changing diagnosis in just the past 6 months and I know I haven't processed any of them yet. Thanks for your input. It helps.
When I first had seizures 11 years ago my MRI didn't have lesions. At the time I had no idea what they were looking for. Then over 5 years ago when I fell alot, bingo! MS.
I fell a couple of months ago and that was about the same time I started wondering what was going on. I've had probably a dozen falls over the past 14-15 years but no balance issues. I'd be walking and wind up flat on my face. The symptoms have been snow balling over the past couple of months. I just chalked it up to being older. I want that magic wand that shows it a positive yes or no. Thank you for sharing your journey. I don't feel like I'm crazy.
I am new here & just read your post. I know how scared & frustrated you must be feeling. But, you never mentioned seeing your PC. Sounds like your husband is concerned about you and probably not sure what questions to ask either. Maybe the two of you need to get together, prior your next doctors appointment, and discuss the questions you want answered.
And, if you feel more comfortable without
Hubby with you just tell him. But, Don’t let your imagination run away with you, like you’re doing. You can only control so much.
You might Google the Serenity Prayer. I’m not an Alcoholic (Nor drink) but I wholeheartedly believe it & try to follow it.
Hi. I went to my PC in January for a new patient visit and within 5 minutes he referred me to a neurologist. As for hubby I haven't figured out if it's denial or just a sceptical attitude. He's the kind that questions everything and pretty much believes nothing. I ordered 3 books on MS and left them out and told him if he wanted to understand what's going on to look through them. I also explained that their is no one test that shows its yes or no. I don't know if it will help or not but we'll see. I have found a support group but dont feel comfortable going without a diagnosis in hand. This waiting a month between appointments is not fun.
My brain MRI showed no lesions but when they finally did the MRI on my neck and thoracic then they found the lesions. That's when he finally did the spinal tap. It took a number of years to finally get an MS diagnosis. Don't give up.
Thanks. I've wondered about that. I've had spasticity in both upper and lower extremities. The lower ones have eased but my shoulders and neck are still tight. I use a walking stick instead a cane and I feel so awkward with those muscles no matter what I do. I guess the next test after this ultra sound will be the spinal tap. I hope they find a test for MS so ay least it wouldnt take so many years to diagnose it.
Try not to be afraid of the spinal tap/lumbar puncture. They numb the area and then you feel pressure. The numbing was the worst and that's over quickly! When all is done keep your posture perfect! Stick straight!! Go home and lay flat for several days. The dr will tell you how many. I only got up to use the bathroom and again...perfect posture! This all is to avoid a horrible headache that can happen. I've had 2 LPs and did the above both times and did fine.
That is so true. They didn't explain it well enough to me and I got up moving to soon. I thought sitting in a recliner was good enough but it wasn't. I had to go back and have a blood patch done. If I ever have to have another one I will lay in bed flat and drink a lot of water.
Hi Sassysmom, be encouraged and don't give up....Please don't! Advocate for you, and let everyone know, only you Know you! I was misdiagnosed, overdiagnosed, multiple diagnosed and finally found my Neurologist (after seeing several) who listened, looked closely at my MRI, did lumbar etc and my lesions are on my Brain MS RR was the diagnosis. Keep us updated. Praying
Thank you. I was really hoping the MRI would clearly show yes or no about it. I had a thorough vision check yesterday so I know my vision is okay. I stick have the hurting in my eyes but it's not anything serious. I'm scheduled for the carotid ultrasound on Thursday and then it's 3 weeks until I see her again. So it's still a wait and see game.
Good very very early morning! *Unfortunately other things cause lesions on the brain 🧠, such as smoking 🚬! I didn’t know this either. On my spinal tap - nothing! That was in 2015. I just had a repeat of my MRI: no change.
But, lesions found on my lower spine at S-2 thru L-5 or something like that. I have DDD (Degenerative Disk Disease) but this is the 1st time anything was said about lesions there. But, I have taken on the attitude that “I just don’t care”. I have absolutely no control over this wonderful” disease! Am angry that I have MS? I really don’t know. Sure, I wish I didn’t but it is as it is. I know could have it so much worse than I do. I use a cane mainly so I don’t fall. I have a motorized wheelchair 🦼 (Thanks to the VA.) because I can’t walk too far/much. And, don’t worry about tomorrow! You’ll only waste today!🥰
I use a walking stick to ry to maintain my balance. But sometimes I stagger like I'm drunk which is a pain. I've seriously thought about buying a shirt that says I'm not drunk I have MS. I also have DDD and even on the neurontin I can feel the burning feeling around my sacrum and above that is a band of burning and pain. The neurontin has definitely improved my quality of life. My biggest concern is about whether to have a ramp put in since I fell on the steps coming in the house. I have to coordinate it with my sons free time and have the lumber here. He lives about 12 hours away do I need to be ready. I can't really say whether or not I "worry" about tomorrow. I don't dread it but I also know that planning ahead is necessary. I'm not as accepting of not knowing what's causing this. I do know it does not present as ALS which is a relief. My dad died of it which is one reason I can handle it if it's MS. It's the not knowing that is frustrating. Thank you for your support.
I think a ramp would be a great idea. And anything else that would make your life easier. Have you thought of having what I call a “threat assessment” done in your home? You may want to discuss it with your doctor. Basically it’s having someone come in and seeing what you need, such as railings - something to hold on to - so you won’t fall in your home. And, I love the shirt 👚 idea! Why not have it made up? It’s humorous! 😚
Since my home is pretty small I always have something close by to touch when I need it. I've taken all my throw rugs up. I'm wanting to put down just a 6x8' rug that can be tacked down well. I'm a little worried about that because my 2 year old poodle doesn't alert us when she has to potty until her bladder is full. She still has accidents and I know it means replacing the rug. It may have something from her spay but no one knows. My kitchen is narrow enough that I can touch both sides of the counters. I need to find a new shower chair and add grab bars for the shower. Right now they aren't critical but it's on my list of upgrades. I'm also looking to upgrade my chair which is fairly low and difficult to get out of. It's a work in progress,
I wish we could get tests without the wait; I don't like waiting, but we do what we have to do! The most important factor is get "you feeling better" and on the proper course of treatment. Sunshine your way and praying always.
I'm actually doing a little better getting around in the house but not so good out. I still do a lot of light touch at times but not always. And I'm really happy with how well the neurontin is working. I can wear shoes without feeling smothered. There's very little of the burning on my feet. I cancelled my carotid ultra sound today because of the snow and possible ice. Not getting out on the mountain roads no matter if they are paved or not. So I'll reschedule that. I'm still not energetic but I'm hoping that diminshes as well. Thanks for your ideas.
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