This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello to any one out there. Does not seem to be much talk on this post. Thought I would put a question out there, as I have done in the past. Still no definite dx just Central Nervous System Disorder. See Neuro every 6 months or so and he sees some changes each time but not progressing very fast. Last MRI was Oct. 09 and was taken on a newer machine, even though I asked for the same as all the other MRI's I have had. Came back with more plaques showing but said not sure if new. Could have been there before but did not show because older machine. A useless result for me. Neuro was not happy. The MRI 6 months or so before that one showed some activity in areas they see MS but did not seem to be there this time. Maybe I am healing myself Sure trying to. The question; I have very overactive reflexes and have not been driving since last summer. My body will jump around with sudden noise, movement, touch and having problems when driving. Was not safe but do miss the independence. My husband does not complain about driving me around but does take him away from what he might be doing. I'm trying to not cut out things and working out how to get around. Can do buses for somethings but not all. Anyways, the neuro is looking at why this is happening. Checked twice to see if seizures, no evidence of. Do any of you have this problem? Anything to do to help, pysio, exercise? Any ideas of what may cause this? Any suggestions are welcome. I use a cane when walking etc. to help but does not help when something sudden happens. People react as if they have caused it. Usually explain it is just me. Just about hit my husband with the cane when waiting for a light to change and a bus drove by. The motion of the bus and sound made my body jump around. Now have to be aware of where people are around me when in busy places. All very interesting and do laugh about. Feel like I cannot go many places by myself now, need someone to help if this happens because sometimes I need to hold on to someone after while my body takes time to come back. Could end up on the ground. Has happened but I was in a house and had help to sit down. Took awhile to get back together. Very strange. Feel like the messages are all mixed up going to my brain and shut down for awhile. Should stop here and post. Hope ones I have talked to before are doing well and enjoying life. We need to love, live and be happy. Everyday is a blessing. Linda

I just noticed there are a lot of posts which date to early 2004 and 2005. Got me to wondering if this is an active site.

It's frustrating to not get any response.

Anyway....my reflexes are very quick. My neuro says that is typical of MS.

When he taps my knee he'd better be standing to the side!

I have a dx of MS since 1995 when I was 50. RRMS.

Tired of the problems associated with it and the problematice issues of when it's MS or another problem. I also have chronic sinusitis and asthma, plus hypothyroid. Fun, fun, fun....

The frustration, as I mentioned, with MS is sorting out what is what. Then what to do. Seems like they just 'refer' you to one type of specialist or another. Meanwhile you are supposed to carry on somehow.

Diane

Diane -- I feel like I am following you around this evening; but, believe me, I am not a stalker.

Here, your mention of "hypothyroid" is not a surprise; it has been found that people with one "autoimmune disease" frequently develop a second one, or even a third one.

The American Autoimmune Related Diseases Association (AARDA) lists more than 80 "autoimmune diseases." Personally, I do not believe that multiple sclerosis is an autoimmune disease! I think that excess insulin plays a key role in this disease.

I don't feel like I'm being followed; sure don't mind getting a response.

I feel your belief that multiple sclerosis is not an autoimmune disease has as much validity as the current guesses the neuro's are making. They don't really know what causes it either. They just follow the dictates of the researchers. This type of disease is a real puzzle even though it's been looked at for a long time.

I guess I'm at a point where I don't care so much what it is; just wish I could feel better.

Right now I'm battling a strange chronic sinus infection which worsened when we moved to NC about 6 yrs. ago.

I find it utterly frustrating to see so many specialists. I did have sinus surgery, but I think I'm worse not better and it did not resolve my problems.

I also have had two UTI's this last few weeks, which can be due to inactivity and some incontinence problems,

I'm sure you will understand I really want to feel better. I have still got plans to do a few things, but they seem less certain.

Diane

Diane, in response to your comment:

I know it is frustrating to deal with many specialists, but there are times when they are necessary. If sinus surgery did not help your problem, perhaps it is time to find another specialist. Depending on your problem, have you discussed a treatment called sinuplasty (apparently something new I read about in the last year)? Would an allergist be more appropriate than an ENT?

I know I am in the minority, but I truly believe that all of us can get back to our previous lives -- I do not completely believe in "permanent" damage in MS. I have things I want to do, too. In fact, I think you would improve to a degree even if the sinus drainage could be ended.

As for MS, I am quite sure that answers will be coming for us soon. But patience is VERY difficult.

I'm afraid I don't agree with you that MS can be reversed (the damage) at this time. I don't get the feeling that there is any magic bullet in the works; lots of experimental stuff, but so far no results.

I think of Annette Funicello as an example of a person who had the means to explore various treatments. She's not in the news much, but the little that is printed portrays her as in bad shape with no improvement.

I'm pretty sure she tried all the available treatments.

I don't think my sinus surgeon was a bad one. He has a great reputation; my sinus is not an easy fix.

I'm not sure about sinusplasty; I'll look it up. I have an infection that doesn't respond to most antibiotics and the big gun antibiotics are risky. I've had a severe allergic reaction to Sulfa drugs for instance, and the newer drugs really do give me problems ...they tear up my stomach or my digestive tract. Once upon a time docs could give you an injection, but not nowdays as my doc explained you'd have to have many injections to get to a dosage that would combat some of the newer bacteria that has evolved.

During my surgery on my sinuses I started bleeding, probably related to the fact that the day prior i'd fallen down the steps from my bonus room, face down, for 9 steps. There was no outward sign of swelling and bruising, but I know how hard I hit when I fell. So probably the damage was inside. I told the doc but he apparently didn't see any problem...

So for 30 minutes they had to staunch the bloodflow and it interfered with progress.

I was okay for a while after surgery, but without the meds like Astelin for the cough/drainage I'd be back to square one. The surgery is not without risk and I am unsure I want to do it again.

Other than that I could do the super antibiotic IV, but there again ...what are the secondary effects???

Right now I have the sinus infection and a UTI. Oh it's just a real fun time. The Cipro I'm on is really not working too well. So I'm not feeling very good.

I do think age is something to consider. I sure feel older and not at all like when I was 40. For about 15 yrs. I took care of my sickly mom and dad. It was an ordeal to say the least and a losing battle with the healthcare problems which arose. I didn't have much time to take care of me.

One time I said to my husband...I'm grateful (and sad) to remember the days when I awoke refreshed and felt like embracing the day.

Diane, I think we must be twins who were separated at birth! I am also allergic to sulfa drugs; and many antibiotics do a number on my digestive tract.

I could have written:

Lynda

What to say. I feel the same about a lot of what you two are talking about. Frustration with no real answers. Do not want a drug to help if not really needed because of side effects from it which may be worse than the ailment. Concern asking another neuro. for a second opinion when the one I've been seeing for over 8 years is considered the one to see re MS. This concern I have gotten over, family Dr. has been trying to get me to see another for a couple of years now and I said yes when I saw her this week. This is not an MS neuro., we both felt they would not look at me with new eyes because of the MS neuro. I have been seeing. The new one is a general neurologist. Maybe he will see things not seen before and have some answers. Maybe.......... Probably take awhile to see too. Could lose the first neuro. too. He was not too keen on a second opinion when my husband and I asked 2 years ago. Said he has shared with others at the MS Clinic he works at. Not sure this did anything for me, they all look to him for answers. With the increase in my myoclonus needed to try something to help with my symptoms. Not driving and now not sure how I will be around our newest grandchild due the end of March. I know walking and holding the baby is out and now not sure if I should hold the baby when sitting down. My arms and upper body can jump all around with noise, movement around me, and touch. I cannot control. This has been increasing slowly. My other symptoms increase, just become my new normal and I move on, having problems moving on with this. Must be the expected new grandchild. Anyways, you two go me going. Could be our age I've been told that re not being able to dx it is MS. Our brains can show lesions and could just be aging. Was told if I was 30 with my symptoms and brain lesions would say MS. Also, if it is something else glad I have not been diagnosed, everyone would stop looking and could have other problems from treatment for MS. Can not win. All for now. Have a good day or night, wherever you are. Linda

Linda-- We must find our own, individual path; and yet at the same time we are all in the same boat, paddling as fast as we can. This means for my own case that I see my neurologist on a "as needed" basis. In fact, I have not seen him for several years. I tried Betaseron, then Avonex, then Copaxone; I saw no improvement with any of them, so I stopped all injections. The theory behind those drugs does not jive with my current belief in hyperinsulinemia as the initiating culprit.

This is my chosen path and does not necessarily work for anyone else.

Ultimately, we each must live each day as best we can. Linda, you will find a way to enjoy your soon-to-arrive grandchild! Sitting down to hold the baby seems to me to be a logical solution. I no longer drive either and it was very difficult to give up that independence. This life with MS is not easy; the changes are especially hard, but all we can do is our best. I am sure that you will prevail as I intend to also.

And, BTW, I don't think that lesions in the brain have ANYTHING to do with the symptoms that we experience! Just another one of my "off the wall"ideas.

Hi LyndaCarol. Just checking to see if anyone is on the site. Sure not used much by us older ones. I agree with you, we need to go our own path and do what works for us. Reading posts from others does help to keep one sane, to know others have similar problems and not crazy. I'm still not sure what I have, except Central Nervous System Disorder, and my family Dr. has convinced me to see a regular Neuro, not MS one. She wants someone to look at me with fresh eyes. Appointment Dec. 9th. May try for a cancellation but.......................probably does not matter when I see him unless I have new symptoms. Do have a few minor ones but not a real problem. Just adjust my new normal Looking forward to our newest grandchild due any day. We will visit them mid April in Ottawa. We live in Van. Take care, smile and laugh a lot, Linda