This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi to everyone. Have not posted for awhile but thought some of you may have responses to my questions. Had latest MRI in Oct. after none for 3 years. Had some 11 + lesions plus two more. Report said could be MS but not to rule out other things. Apparently not enough since the last one. Neuro would not say MS. Did say if 29 years old would dx MS but 60 so could still be age related. Have increased symptoms re burning around back and to front, back of arms, arm pits off and on, fatigue, react more now to people coming up to me and I do not see, I can drop. Especially if they touch my back. My two brothers now like to tease me by grabbing me and holding me up as my body tries to fall and has some spastic reactions. I laugh and this makes it worse because I cannot get control of my body. Good to laugh about but is happening more often and easier. Apt. with primary Dr. after MRI result, she was walking with me down the hall and touch my back, I started to drop, she grabbed me and I put my hand out for the wall. She was worried and asked if this is happening more, also thought MRI should dx MS. My husband Michael wanted to do the touching of my back without me seeing him when with the Neuro, so he could see what we talk about. He didn't though. Think Neuro understands what happens. Sees the increase when checking reflexes and muscle strength. My legs, arms move all over. Hard to explain but maybe some of you have had. Has ordered an EEG to check messages from brain and looking for problems in the gray matter. Could be something he can help with a drug. Not sure I'm interested in a drug but will have to see. Have on Mon. Anyone have an EEG? If so, what was the result? Not sure what to look for. Neuro did say two ailments he is looking at but both Michael and I did not remember when we left his office and cannot look up. Have tried searches but have not recognized any of the info from what he said. Anyways, there it is. Will close now and hope to hear from someone. Linda

Hi Linda

So nice to hear from you again but sorry your symptoms seem to be multiplying.

I think it's good that your neuro is doing additional testing. It's definitely my understanding we "oldie but goodies" have an increased likelihood of lesions from things other than MS so that it's important to rule everything else out. I never had an EEG though so can't comment on that.

Now, I do have an exaggerated startle reflex that sounds similar to some of the reactions you mentioned--although I don't drop when people, loud noises, etc. surprise me, I do jump. When it happens I tell people I have a hole in my startle reflex and to knock it off. It is definitely good to laugh about it. Actually I really don't know if I have "hole" in my startle reflex, but I definitely know there's something wrong with it.

I hope your appointment goes well. I've no idea what the neuro may be looking for at this point since you've had lots of prior testing.

Take care and keep us posted. Hopefully some others will weigh in too.

Sharon

Hi Sharon. Thanks for the reply. Saw my family Dr. today re EEG results. They did not show seizures happening, this was what they were looking for. Neuro is away till Jan. 25th. Family Dr. talked about having a second opinion arranged by the Neuro I have now. Been over 5 years and last MRI said suggestive of MS so time to have someone else look at too. Did mention a year ago and he was not very interested in doing. Will push for this time. I'm not looking for a dx of MS but maybe someone else working with the neuro I have now would help to see what I do have. My family Dr. feels it is MS because of my symptoms and last MRI. Have had a lot of things ruled out already. Also talked to her re driving because of problems with movement when surprised etc. and she said I need to think about. Said it might be a good idea not to drive. My husband feels it is when I'm overtired and/or been driving for more than 2 hours. Have already cut down my driving so will be more aware when I drive and not be overtired or in rush hour traffic.
Will be accessing. Enough of all this for now. Need to enjoy Christmas, family, friends etc. MERRY CHRISTMAS AND HAPPY NEW YEAR Linda

Hi Sharon and anyone else reading. Saw my Neuro yesterday. He does not want to dx MS but did say not anything else. Guess that makes me probably MS. He has ruled out everything he can think of but does not have enough info from tests etc. to say MS is what I have. We did ask re talking to other Neuro's re my symptoms etc. and he said the group of Dr.'s he works with at the MS clinic go over different patients symptoms. He said I am not the only one these Dr.'s are seeing who have symptoms of MS and some test results saying MS but not enough to dx. Still seems my age of 60 is part of the problem, some of the lesions, 13 or 14 now, could be age related. He did note reflex changes since last time. That was 3 months ago. Seems to be my big problem right now. Have had other things but all sensory and not "big" things. Still a problem for me but not hard to live with. The fatigue has increased too, learning to pace myself better. Most times Feel somewhat better with this and knowing he is talking with other Neuro's. When I talked with the local MS Clinic, (where he does not work out of, another one), the person I talked to said he is one of the best to see and helped me with ideas to talk to him and not hopefully put him off. My husband and I talked a lot the week before to work out how to bring up him talking to another Neuro. As it was he brought up the MS Clinic he works out of and said I am not the only one showing MS but not able to dx. This opened up him talking about me with others. He did not say he had but said they did. We took that to mean he has or would be. He saw no need for any medication, nor do I, and let us know he is not convinced about Vit. D, which I take and will continue. I see him again in 6 months. Knowing what I have is probably MS will help me, first time he has said this. Now to move on and put things behind me till my next visit in 6 months. Life is too short to worry about what tomorrow will bring. As he said, I am progressing slowly and it could just stop progressing. Happens with MS. I am able to live fairly well most of the time with the way it is and hope to have very little changes over time. Will live the best I can if it does change more and learn how to change with it. Thanks for listening, Linda

Hi Linda

Thanks for the update. It seems to me like your neuro is doing the right things and so are you and it sure sounds to me like he spoke with other neuros about your case for “expert” input and I’m with you—I’d stick with the Vitamin D.

It’s great you’re in agreement with him about no drugs and that seems perfectly reasonable to me. As you say, if it is MS, your progression has been slow and manageable and you’re right, if it’s been slow to date, it may well continue that way, if at all. I totally agree life is definitely too short to worry about what tomorrow will bring.

Personally I think exercise of any kind is a big plus so if you’ve an opportunity for that I’d say take it or do it. It might even help a little bit with the fatigue.

Meanwhile I continue to be “startled” on a somewhat regular basis (it seems to wax and wane with me) but wanted to let you know that in one of the MS magazines I get (unfortunately I can’t recall which one), there was a physician Q & A column where someone asked about the startle reflex and MS and as I recall, the answer was that it was a pretty rare, but not unknown, symptom. Maybe it’s more common among people with onset at an older age. Who knows……

Overall though it sounds like you’re attitude is positive and you’re doing well, even if you’re slipping closer to an actual diagnosis. It is definitely harder (I think) to diagnose as we get older since so many other things could cause lesions over time.

Take care. I hope things continue to go well for you and to see you posting again in the future with an update.

Sharon

Thanks for the reply Sharon. As for exercise, we operate a small organic farm and do gate sales during the summer. This keeps us both busy physically during spring, summer and fall, swim once a week when able and looking to start yoga again. Instructor moved a year ago and have not found one who does restorative yoga the way she did. Will make an effort to find one in the next month. Walk using a cane but can go some distance slowly. Not like I use to, about 5 miles 3 or 4 times a week than. Miss that.

All for now, Linda

Linda

I guess that farming will keep you busy physically. I was born and raised on a farm so know some of what it's like. Lots of hard work and plenty of exercise.

Too bad about the Yoga instructor. I do hope you find one you like soon. I definitely think that's a good thing....and the swimming as well.

I do water aerobics twice a week and love it. Plus I work out at a fitness center several times a week. It's attached to an outpatient rehabilitation facility so I get lots of helpful tips that I don't think I'd get at a regular fitness center.

I'm sorry I missed or didn't realize you were walking with a cane now and had to give up walking 15 or miles a week. That you're still walking as much as you can even with the cane is good IMO.

All for now from here too--take care.

Sharon

Hi Sharon. I use the cane when I'm walking any distance. Helps with my balance when I'm on my feet for awhile and reminds me to use the railing when on stairs. Fell up stairs once and realized I was ignoring my problems. Better to use the cane and not fall. Also helps when people come close to me and my body reacts with a hyper reflex. I have not fallen but do grab the people around me, the wall, what ever. Annoying but helps to have the cane to grab, not the person. People are surprised when I have the cane because they had only seen me when I did not use it. I look OK when not using and then they wonder what the problem is when I do use it. Been an education tool This ailment has changed how I work in our garden and do fatigue and have to take breaks more often but can do, so will. We both enjoy living here and just bought a new tractor to help us with the things we find harder to do. Has helped a lot. Being a small operation with gate sales once a week in the summer, or if some one phones and we are home we sell. Just enough customers for the two of us to handle. Thought this would give you a better idea of how I am doing. Did not want you to think I was not able to walk but do use the cane to help when needed. We were in Hawaii for 3 weeks in Nov. and walked a lot. Had to take some days off but found I could get around pretty well. Slower, but able to do. Now we have booked a longer time away. Leave for England, Scotland and Ireland in April and back June. Both looking forward to. Getting late, need some sleep. Thanks for your reply, Linda