I'm a 62 year old female living in northern New England, a college professor and an avid day hiker. Last May I started noticing an odd feeling of weakness in my right leg when walking, though it didn't disable me in any way. I also noticed that my patellar reflex on that side was very brisk, and when pushing with my feet in a particular way my right ankle would start jerking uncontrollably. My PCP recommended I see a neurologist, and I spent the whole time waiting for the appointment being terrified that I was coming down with ALS. When the appointment came, the neurologist quickly reassured me that it wasn't ALS, but also added that I did have abnormally brisk reflexes on the right side and a bit of clonus as well. An MRI of the cervical and thoracic spine was ordered, and in November I was told that I had a small spot of demyelination on my C-spine.
Of course my first thought was, out of the frying pan into the fire! Not ALS, but could be MS. The neuro agreed and ordered a brain MRI, which I had in December and which was negative. So where we're at is "probably not MS" but still not certain, could be transverse myelitis or some other demyelinating disease. I was to come back in May for a followup, and in the meantime call for an earlier appointment if my symptoms worsened.
How to tell if my symptoms worsen? I really wasn't sure. They change constantly. Some days the leg feels weak, some days it feels tight and wooden. But I have noticed since the new semester began that after standing for an hour lecturing to my class, my leg definitely feels stiffer and takes longer to get loosened up. It also tires more easily during long walks, and usually feels like a stick of wood by the time I get back home. This came on pretty suddenly in the last two weeks and has me in something of a panic. Yes, they're getting worse... :(
I called last week for an earlier appointment with my neuro but was told the earliest they could fit me in was mid April, and she is even on vacation until end of February. I made the appointment but am not sure whether I can make it that long before real disability sets in. I didn't say this before but because of the parking situation at my college, I have to walk to campus and back every day. It's only about a mile round trip but it is starting to feel like much longer, especially in the snow and cold.
Anyway that is my story. I thought I would throw it out there... just looking for a little support and hoping someone might have some suggestions for how to see someone sooner than April. I'm also not sure whether this is the right forum for me since I haven't been diagnosed, and it seems at this point that I don't have true MS. If that's the case then just tell me and I'll go away!
Hugs and best wishes to all!
Welcome to our site. You should definitely get a second opinion or third opinion. You should not wait until April. Please try to see another neurologist before April. Please let us know how things turn out. Good luck.
Wow! I thought I had checked a box that said to send me notifications by email when my thread was replied to, so I was surprised to see multiple replies from some very kind and helpful people here! Thank you so much for the warm welcome, everyone.
capitolcarol, I am definitely going to try to see someone before April but it is not easy to find another neurologist here. I live in a very rural area and this neuro is the only one for at least 50 miles around. There are a couple of larger universities both north and south of here with big hospitals but I can't imagine the wait will be any shorter there, especially since I'm a new patient to them. What I would like to do is try to get my PCP to pull some strings with my neuro's office to get me in sooner, since both clinics are in the same hospital system. The problem is that the PCP I had been seeing for over two years, a very good NP, left the area a couple of months ago so I will be seeing someone completely new. The turnover of practitioners at this clinic is very high; my PCP before her, an MD, left after I had only seen her for about 9 months. And because this is a rural area, they are pretty much the only game in town. :(
well fizz, getting an appointment with a neurologist is a wait unless a pcp can get an emergency appointment set up. I had to cancel my apt with the neuro I see and got an apt two months later. They are in demand?? or there are fewer of them???
While you are waiting there are things you can do to improve mobility. Let us assume it is ms. Once it is diagnosed medication may be prescribed, which will bring it's own side effects, whether it is a disease modifying drug or something to control the muscles. With ms, the nerves also play a pivotal role in messing with the system. So it could be a nerve glitch casued by the brain sending repeated messages to the nerves. It can also be a response to muscular stress. When you stand and teach do you keep the muscles in your legs tense? do you relax the muscles, are you tense because you know something is wrong. With ms, imagination plays a significant role in controlling our bodies.
Learning to keep soft muscles all the time is an art we forget, so we stress our muscles even when it is not necessary. So we make matters worse because of habits we take for granted.
Nag nag nag, all I say here all the time relax relax relax, a quiet mind and soft muscles is the only way to play the ms game and win. For more than fifty years I have been living with ms, twenty years ago we, my partner, and I saw how badly I was doing we assumed I was not long for the planet, so we moved to Missouri because it was cheap enough for us to spend some quality time together before I was dead. I began to soak up sunshine and relax and slowly grew stronger.
With ms, if you live long enough the disease progresses, fast forward to four years ago when the disease modifying drug (dmd) was no longer having any effect therefore I was getting worse and diagnosed with secondary progressive ms. I am on no dmd and spend most of my time relaxing all my muscles. The point being, I have had twenty years more than we thought, even though some of them were not fun, or not good either. Finding what works for you is important to the quality of life, it is nothing a doctor can tell you, it is something you 'feel' for yourself. Doctors are good for emergency management, something to hold you over until you figure it out for yourself.
If you read all the posts here, all the way back to 2012 you will find all the answers to all the questions about what happens and how to modify living with ms, and most of it is intuition with education, choosing what suits a lifestyle, a best educated guess mixed in with trial and error.
But, not making matters worse by poor body mechanics, and fantasy of imagination are not our friends. Some people call them 'demons' the haunts that make us tense for no reason other than the stories we make up in our heads.
And, doctors are very good for ruling out, it is not this, it is not that, it is not this, and you will have the opportunity to spend years determining, it is not this it is not that. So do not let you imagination get in your way of problem solving, finding solutions that work for you, and your circumstances.
I find myself being my own problem solver. It's funny how people always ask me "what did the doctor say?" My answer is usually nothing. I have an issue with my legs and them going completely numb when i walk too fast or sit for a long time or even lay down. I told my doctor and he told me to monitor it. Not sure when it will end. Since we have cold weather hopefully it will end when the weather breaks.
Maria1, wow, you have been living with this beast for over 50 years? And you still have such a positive attitude! I really admire your courage and persistence. Thank you for your words of wisdom. I am still just feeling my way here, and really have no idea if this is going to be something chronic that I can live an active life with for many years, or if it will turn out to be the first sign of something that will disable me completely in short order. There are just so many diseases that can cause demyelination! I get what you're saying about the demons that haunt is... I have lots of those and can't keep my mind from imagining all sorts of terrible outcomes. MS is actually the least serious of all the things I've imagined this might be.
As far as DMDs, I can't imagine they will even want to start me on anything until they know what it is, and at this point, it doesn't even look like MS (which is a very scary thought since if it is progressing as it seems to be, nearly everything else it could be is worse).
I really do try to find ways to keep my leg relaxed as it often does feel as if it is tensing up because of anxiety. At other times though, it seems that it has a mind of its own and I have little control over it. The muscles that tighten up are the ones that flex the knee and the ankle. I have wondered if gentle stretching would help and I'm seriously thinking of trying it out, though it isn't easy for me because by muscles, especially my quads, have always been tight and it is very easy for me to pull a muscle if I'm not extremely careful. Do you think this is a good idea, or something I should avoid?
I'm also trying to keep as active as possible, taking frequent walks despite the tightness afterward, but I'm not sure whether that is helpful or whether it is actually making me worse. And since I have no choice but to walk to work at this point, I'm really in a quandary. I feel so lost and overwhelmed.
Welcome to the site. Talk about leg weakness and walking I know all too well. When you get to see the doctor ask questions. Maybe you can look for another Neuro that has an appointment sooner. I found myself calling around town for my second opinion. I have a very long story but I wish you the best of luck. Please let us know when you get some answers.
Hi myabonita, and thank you for the reply and the welcome! I am actually not sure if my leg is truly weak or if it is just that the constant tightness is tiring the muscles out. When I saw the neuro in September, she did not see any weakness but said my leg appeared to be spastic. I'm guessing that my main problem right now is spasticity but I can't really be sure about weakness. Is easy fatiguing a sign of weakness? There really aren't any movements that I could do before that i can't do now, it's just that the leg feels very tight and sluggish, like it takes extra effort to move it and bend the knee, and it gets worse when I use it a lot or try to stand in one position too long.
I wish I could call around town for another opinion, but unfortunately this "town" has only about 6000 people. There is no one else to see here and I don't have an "in" at either of the large university hospitals an hour or more drive away. I'm hoping to get in on an urgent basis with help from a new PCP. I need to call her office today.
fizz & mybonita, instead of stretching try muscle relaxing exercises, tighten the muscle, hold it for five seconds, then relax the muscle. Stretching will tighten an already tense muscle, making it worse. You can do it sitting or standing, all day long and you will get in the habit of doing it all the time, it works. Also deep breathing exercises from the diaphram, inhale for five seconds, hold it for five seconds, take five seconds to expell. Oxygen is wonderful, giggle.
Hi, my situation is a bit different, but we are close in age. I' m 63 and was diagnosed in 1985. I was 30. MS is very unpredictable and symptoms are different for everyone. Your symptoms sound like they could be MS, or maybe a dozen other things. Can you get on a cancellation list with the dr so if someone cancels, you can get in sooner? Whatever you have, I would recommend stretching for the leg stiffness. That has helped me more than anything. I learned a lot of good stretching exercises at Physical Therapy years ago. I bought a stretch-out strap and do them at home regularly. Of anything I've ever done, those stretches make the most difference. I certainly hope you don't have MS, but that you find out soon what's going on so you can deal with it (and I'm sure you will deal with). Also, you might try asking the dr about getting a handicapped placard. Maybe there are closer handicapped parking spots? This site is a great place for advice and support! Best of luck, Linda
Hi Iveglatte, thanks for the advice and support. Yes, I'm going to try to get on a cancellation list if my PCP can't get me in any sooner. I couldn't call her today, I've been busy with meetings and classes from early morning until after 5pm. Tomorrow is my day away from teaching so hopefully I'll have a chance. At this point I think using a handicapped placard would be abusing the privilege, if I could even get one. And it wouldn't help much at work as there are very very few handicapped spots on campus, and none in the lot closest to my building. I might not have been clear, but I walk from home, it's not.a matter of getting closer to my office. There has been mega construction on campus for nearly a year now, the parking lots are full by sunrise and I can't get up an hour earlier just to nab a parking spot, I need that hour of sleep. To be honest, the thought of losing the ability to walk scares me more than anything else. I'm afraid that if I stop walking to work, I'll just lose strength to the point where I can't do it anymore. I want to hold on to walking as long as I can! I hope that makes sense, lol...
You are describing exactly how my MS symptions started. Problems with my right leg and foot. Things progressed after that. Get a cane to help you walk, and ask your neurologist to test you with a spinal tap. That's the way mine was diagnosed. I've had years of MRI's but that doesn't confirm any disease. I have no brain lesions, but have 12 "o" bands in my spinal fluid. They should also test you for NMO, which mimics MS symptions. That's just a blood test. I had to wait 5 years before I was diagnosed because I wasn't able to get to the right doctor. Needless to say, the symptions got a lot worse during that time. You have to fight for yourself and make sure your doctor knows you won't take "I don't think so" for an answer. Your symptions will not just "go away" or get better without treatment. I'm not trying to scare you...I'm just trying to save you from years of pain and worry!
Hi shiloh, and thank you! I think a spinal tap will probably be the next step, but I have to get in to be seen, and that is not going to be easy. I doubt if they are even considering NMO since I've never had optic neuritis - though it is a thought because I do have an APD that was dx'd as secondary to a head injury I suffered two years ago. The neurophthalmologist I saw for that said it was "traumatic optic neuropathy", but I guess that might deserve a second look. About getting a cane, that's actually a scary thought! No, I really don't need a cane at this point, and I hope I never do, but it could come to that if things keep progressing. My hope is that they can find out what is going on and treat it before that happens. The really scary part is that because of my age it probably isn't MS but some other demyelinating disease, and most of those (like NMO) are worse than MS.
You are so welcome on this sight and yes it is the right forum. You have my support. I too work full time and have a long walk to my building. I don't think its a mile but for me it's long. I use a handicap sticker which makes it a little shorter.
If you really like this physician that your seeing you might want to call them back to see if they have another neurologist that is covering that you could see sooner. This is something important. I would say get another opinion but it takes a long time to see a neurologist. Where I go they have same day appointments which would be really awesome for you. You just have to look. Please also remember to try an advocate for your self you need an appointment as soon as possible. You are worried because it's getting worse.
The other thing which I know is expensive but if you get to the point where you can't wait go to the emergency room or even urgent care. I had a ER doctor call the neurologist and get me any earlier once because I was having so much trouble walking.
I know you haven't been diagnosed with MS and you might not have it but the MS society is a great resource. Have a great day and good luck!
Thanks Gabrielle! I called the neurologist's office today and it turns out they do have a cancellation list and I'm now on it. They do not have a second neurologist, though I didn't specifically ask if they have anyone covering for the one they have. I should think they would have given me that information if they did have someone covering for her, but I guess maybe not.
Urgent care is something I've used before for other things and I wouldn't hesitate to use it for this if I thought it would be any use, but the truth is, the care at the local urgent care is fine for injuries and colds or flu, but something like this is way above their level of expertise. You generally see only a PA, not an MD. The ER will not do anything for you if you don't have something immediately life-threatening. Going for a worsening of a chronic disease will just get you... a large bill.
Even if I could get a handicap sticker it wouldn't help - there just aren't any handicap spots close enough to my building for it to make a difference. And I think it would be hard to get one - no one could even suspect by watching me walk that I have a problem. It's all subjective - muscles that get tight or sore mostly. I've had weird tinglings as well and numbness in my feet and toes, but those do not qualify as a disability.
I also have an appointment Thursday with a PCP at the local clinic that I've seen before for hiking injuries. He is very good, an orthopod by specialty but a great generalist too. I am hoping that he can pull some strings for me with the neuro clinic, and in the meantime prescribe something to take the edge off the spasticity. Before I ran out I found that methocarbamol actually helps a lot. He prescribed that for me before for a rotator cuff injury, so I'm hopeful he will again.
I'm glad they put you on the cancel list. I get that the ER won't do much but waste your money and urgent care yeah my thought is someone would call and advocate but if your going to your PCP that good enough. I take baclofen for my spacisity and it helps with my walking!
Also my doctor will write me a note for anything. Maybe they will write you a note that you need a closer spot for safety reasons. I know my concern was in the winter I could fall and trip. You might not live in a winter zone which then I guess you could still fall but no snow or ice to make it easier. I hope you get your answer!
Hi again Gabrielle,
Yeah tripping and falling is a concern of mine too, I live in New England. We have several feet of snow now and more to come this weekend. But as I said, a handicap sticker wouldn't help because there is no closer spot to get, handicapped or no. The reason is that two parking lots are closed because of long term building construction and it is all close to my building, so both of the open lots in my area are getting the overflow. They are completely filled up by 7:30 am. The only lots that aren't affected are as far away from my building as where I live. That is why I walk from home - I'm just not willing to give up even more precious sleep to go in early enough to get a parking space.
I saw my PCP yesterday and got a script for methocarbamol. It helps, but he gave me a limited supply, about 15 days, with no refills. He said he would send a note to the neurologist to try to get me seen earlier, so I'm hoping they will call me sometime in the next week. If not, I don't know what to do. I took a walk today after work and my leg was very stiff and tired afterward. Walking in snow is so tiring now! Just a few weeks ago over Christmas break I had no difficulty at all. I think I'm going downhill fast and not sure where I can find help right away.
Update: I finally got in to see my neurologist today for my symptom progression, on a cancellation. She could not detect any changes on the exam but said that my right leg definitely has increased muscle tone and some spasticity. She wants to redo the C-spine MRI I had in November, but also said that sometimes, even with a stable lesion, there can be increased spasticity over time, and that she suspects that is what is going on with me. The MRI will tell if there has been any disease activity since the last study.
In the meantime she prescribed a starting dose of baclofen, 10 mg/day, which I'm trying now. So far I can't be certain it is having much effect, though within 15 minutes of taking it I noticed a chronic muscle spasm in that leg just disappeared. So I'm hopeful it will help.
Another update... recently I had a followup C-spine MRI to gauge if there has been any progression of the lesion they saw in November, since I have had some increased spasticity in my right leg since then. Though it took a couple of weeks for the neuro to get back to me, and even an impromptu visit to the office, finally she did... and I really don't know what to make of the results. So I'd like to ask the community if this makes any sense.
In a word, the lesion was gone. No sign that it ever was there. The report apparenly said they suspect it was an artifact to begin with (I haven't actually seen it). My neuro thinks it was real because it appeared to be a spot of demyelination and in exactly the right place to account for my symptoms. She said that increased spasticity without any disease progression is quite common, and lesions on the spinal cord due to inflammation are very hard to image on MRI, so it's very possible for something to be there and show up one time and not the next. She said this is a good sign, that it's not a tumor and there has been no apparent progression.
Me? I'm scared to death, now more than ever.
I have no idea at this point whether to trust her. My real fear all along has been not MS but ALS, given my age (now 63), and the only thing that has reassured me so far that it wasn't ALS was the visible lesion, since ALS doesn't cause anything that shows up on MRI and certainly not demyelination in the early stages. Now that's all out the window. She says that this is clearly NOT ALS, that I would have more disability by now if it was ALS, and thst she has seen enough ALS to be sure that it isn't that.
I wish I could be sure.
The neuro has suggested doing a lumbar puncture to look for oligoclonal bands in my CSF, as well as en evoked potentials study, since she still suspects it could be a mild form of MS.
Does any of this make sense? Does it sound like she knows what she is talking about? Should I trust her or look for someone else? Thanks in advance for any replies.