New Elderly Member With Possible Late Onset MS

[allenport]

I'll be 71 next month. We all know that MS usually strikes long before this, except for people that have had it for a long time but didn't get diagnosed until later. In my case, I had not even a slight symptom of anything until recently.

My symptoms started in November 2016 when I got my very first UTI. I don't know if this is related or not, but I was extremely healthy and active prior to that. Also interesting to note is that my UTI has not be cured and I have been on antibiotics for going on 7 months now. I know that Ciprofloxin and antibiotics of that type can cause neuro problems, but I was not on that drug.

I have the burning in my lower calves, the right one worse than the left. It doesn't bother me much; certainly not enough to take a med for it. I occasionally get that 'water drop on the leg' feeling. I have paresthesia in my arms/hands but it only happens at night in bed. Now...one could say this is caused by sleeping in the wrong position. No, that is not the case here. It varies which arm it happens to and sometimes both arms at the same time. Sometimes it's just that feeling one gets when coming out of a limb falling asleep, and other times I get the total numbness on the top of my hand. It resolves rather quickly (depends what one calls quick). Once I get up and move around in the morning, I never get it again. However, the arms and hands feel funky; not normal. Same goes for the legs. The worst part is the worrying about the 'what ifs'.

I passed the basic Neuro Exams. I have had an EMG/NCS and it was ok. I had the Brain and Cervical MRI with the 3T and there was nothing there except for what would be considered normal for an old person's brain. I had some arthritis in my neck. Next I am going for all three Evoked Potentials Tests. I am also seeing a second Neurologist tomorrow because I don't particular like the one I'm using now.

As for common MS symptoms I do not have: No eye problems, No balance problems, No fatigue, No weakness in limbs, No problem with heat, No digestive problems, No headaches or dizziness.

As far as medication, I tried the Gabapentin/Neurotin and I didn't like it. Besides, I read pages and pages of people writing they wanted off it and the withdrawal effects were horrible. Scared me.

If I do have MS, it probably is PPMS because I get no relapses. My symptoms are constant. I also probably wouldn't take and meds for it anyway. I'd just like to know if I have it so I can plan for what's left of my future. Like, am I going to be in a wheelchair or need to go to a nursing home.

[SNOOPY]

Hello allenport and welcome to MSWorld.

From what you have written it doesn't appear to be Multiple Sclerosis, but I am not a medical professional.

What caught my attention was this:

I have paresthesia in my arms/hands but it only happens at night in bed. Now...one could say this is caused by sleeping in the wrong position. No, that is not the case here. It varies which arm it happens to and sometimes both arms at the same time. Sometimes it's just that feeling one gets when coming out of a limb falling asleep, and other times I get the total numbness on the top of my hand. It resolves rather quickly (depends what one calls quick). Once I get up and move around in the morning, I never get it again.

The symptoms of MS are not positional and will not resolve by changing positions, shaking the effects limb or moving around in any fashion.

interesting to note is that my UTI has not be cured and I have been on antibiotics for going on 7 months now.

Taking antibiotics long term for a UTI that hasn't gone away doesn't sound right. Are you under the care of a Urologist?

Many things can cause the symptoms you are having. If you have not been evaluated by your Primary Care Physician then please do so. Blood work would also be a good idea if none has been done recently.

[allenport]

Taking antibiotics long term for a UTI that hasn't gone away doesn't sound right. Are you under the care of a Urologist?

Many things can cause the symptoms you are having. If you have not been evaluated by your Primary Care Physician then please do so. Blood work would also be a good idea if none has been done recently.

Thanks Snoopy. Regarding the UTI, I have been to my Primary Care, and I've been through three Urologists. You probably know this, but with a UTI the lab cultures your urine to determine which bacteria it is and which antibiotics are sensitive to it. I have been on 4 different antibiotics and they do not kill the bacteria completely. They stop the growth enough that I am somewhat comfortable while on the abx, but leave some germs behind to grow. Of course being on abx that long is horrible. You can just imagine how distraught and hopeless I feel. The only abx I have not tried is Ciprofloxin from the Fluoroquinolone family. It can cause neurolgical problems and tendon tearing, especially in the elderly. I don't need that.

It is comforting to hear you say that in general MS numbness isn't able to be relieved by moving a limb or shaking it out. I read lots of writings from people with MS that say they have numbness, etc. but they don't say how long it lasts, whether it is hourly, daily, weeks, waxes/wanes, and things like that. Same with the burning.

Whatever I have is definitely nerve related.

[pennstater]

The fact that MRIs were ok is a good sign. The other thing that is not usually MS is bilateral symptoms. That is not a normal presentation. Usually, one side is impacted.

Outside a relapse, MS symptoms tend to be constant. Getting overheated or extra tired, running a fever, or having an infection may temporarily present a worsening of symptoms.

Followup for answers, but from what you described, I would be surprised if MS.

[jreagan70]

Hi allenport:

You're definitely having neurological symptoms, but what you've described doesn't sound like MS. When nerves are malfunctioning, the symptoms are pretty much the same no matter what the cause is. So symptoms alone can't determine the cause.

The problem with descriptions of nerve-related symptoms is that they usually leave out the context of the symptoms and the anatomy and physiology involved in the cause. In context, your symptoms don't sound like MS for too many reasons to go into here. The short list is that MS symptoms aren't bilaterally symmetric at onset, don't occur over most or all of the body at onset, aren't random, aren't intermittent, and aren't positional. Any idea that you might have PPMS is taken far out of context.

Another trend described by people who have body-wide, bilaterally symmetric, random, and intermittent symptoms and no indication of MS is that their symptoms are almost entirely sensory -- virtually no motor symptoms. It's telling that you don't have the usual MS symptoms, including the motor ones.

A diagnosis of MS relies heavily on MRI findings. MS lesions tend to look a particular way and are located in particular places in the brain. Your MRIs apparently don't show any MRI-related lesions, let alone the several in your brain and spinal cord that would be necessary to explain your symptoms.

The kinds of neurological symptoms you're describing tend to be related to chemical, circulatory, and mechanical causes -- one or a combination of them. In your case, the timing of the onset of your symptoms is suspicious for chemical involvement from the bacteria causing your ongoing UTI and the antibiotics being used to treat it.

The worst part is the worrying about the 'what ifs'.

Your worry is evident in your post. Your worry is taking you down paths there's no logical reason for you to be going down. More importantly, it's preventing you from appropriately weighing the risk vs. benefit options that will enable you to take charge of your health care. I hope that you and your doctors will find some answers that will get you back on track.

[hippiechic]

Just a response to how you're feeling and not the possibility of MS, but you mentioned that before getting the UTI you were healthy and active. So I wonder if since you've been having the problem with the UTI and no doubt feeling yucky from that and the antibiotics if you still haven't resumed your former activity level? Because I know at any age part of what was making you feel good and healthy was your activity level, so decreasing that significantly without any sort of illness would by itself make you "feel" less healthy and good. Does that make any sense?

I'm a little younger than you but I know even at my age the less I do the worse I feel. It seems like everything is going okay, I get sick, I stop exercising or going out and it becomes very hard to resume that former level of activity. Things seem to hurt more than they did and I notice them more probably because I'm already feeling bad and I'm not keeping myself as busy. So it becomes a vicious cycle.

I also have osteo arthritis/stenosis in my neck and have the hands falling asleep issue when sleeping on my back. I'm pretty sure that's what's causing it because I herniated a disk in my neck once and it's generally a problem area for me. So if you're moving less it makes sense that things are starting to get a little tight in that area and probably need some loosening up. I also have some issues in my legs, and my feet sometimes turn blue and/or fall asleep while sitting, but I have arthritis in my lower back too. So maybe if you have it in your back that is what's happening for you too?

Assuming that all comes back negative in terms of possible MS or other, maybe ask to have some X-rays done on your back as well and then maybe some PT would help? I had some when I injured my neck and learned some great exercises that help keep things loose and have kept me from reinjuring for over 10 years. That may be enough to get you feeling confident again to start getting out there and living your life again.

Anyway, I'm here as a limbo lander too not as someone diagnosed with MS. I do have brain lesions not typical for my age and in one of the right places (periventricular), fatigue, etc. etc. But I'm pretty hopeful, maybe even confident, that it is because of other reasons. Time will tell. Hope you have good luck too and most of all feel better.