some thoughts

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some thoughts

Postby pinda » Sun Aug 03, 2008 1:45 pm

Hello. I have not posted very much but do look in from time to time. Find lots of info to help but still going through not knowing for sure if I have MS. Been over 6 years with some progression of symptoms. Been dx with Central Nervous System Disorder. Last MRI Oct. 2007 showed 2 new lesions that could suggest MS. Neuro has not dx MS, I asked what else could be looked at and he said nothing. As of 3 years before had at least 11 lesions but not conclusive for MS. I'm 60 so my age is a factor for lesions. Saw Neuro last week and he has ordered another MRI for April 2009. Wants to see if the shorter time between shows any change. He seems to be confused because I should show more definite signs it is MS. My symptoms, mostly sensory with balance, and walking problems, point to it. Not on any drugs. Use extra strength Tylenol or Ibuprofen at times, Vit. C, D and fish oil, do restorative yoga, work in our Organic Garden and do sales once a week, walk with a cane if doing distances, try to stay positive, travel as we can etc. All looks good when I read over but still feel the need to know what is going on with me. Like my Neuro who is well known in MS circles and my primary Dr. agrees would be hard to see someone else and have them see anything different than him because of his reputation. He is looking at everything so no complaints there. Why am I writing, guess I just need someone to listen. Hard to talk to family etc. about my feelings and frustrations re my illness. When I talk to the MS support people I feel I do not quite fit. My primary Dr. and I do feel I have MS. She has seen the progression and especially my balance and over reactive reflexes which have caused me to not drive as much or very far. My leg has jumped from the gas to the brake without me being able to control and some problems with reflexes when in lots of traffic. Hard to take but monitoring to see if I should be driving. I'm OK if under 2 hours and not in traffic. Will not do traffic anymore. My husband is very aware and supportive and would let me know if the time to stop driving is now. Anyways, thanks for listening. Do not expect responses but needed to talk. Linda
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Postby mrhodes40 » Sun Aug 03, 2008 2:11 pm

Hi Linda,
I am sorry diagnosis is really hard for everyone it takes an average of 2 years, but sounds ike you got even more than that.

I will recommend that you and anyone reading this with MS go to your local access mobility dealer, a place that installs adaptive devices in cars, and find out what is available.

I have jumpylegs when I drive much worse on the right. I got a left accelerator installed in my car and it comes right out so my husband can drive my car too. It is by far the best thng I could have done! I feel safe and secure driving.

That having been said, being at the access mobility dealer was a great experience. The person showed me all the other adaptive devices available as well. Gee I was shocked! If you can move a finger you can drive!

Hand controls are easy to work it is amazing how they are. If I ever need them I will know they are there.

He said that it is the law that all rental car agencies have a car with hand controls so a disabled person has something available too. He siad I might want to consider learning to drive hand controls for that purpose.

It is also true that their company is in many cities so if you travel you can get them to give you a scooter in your destiantion as well. I had no idea that the world could be so accessible.

SO I hope tis helps a little
I am not trying to pump access mobility systems, I don't work for them or anything (and I've been here for years) I know there are other companies out there, but I did get good help from them.
marie
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Postby jimmylegs » Sun Aug 03, 2008 2:43 pm

hey there, you can investigate whether iron, magnesium, potassium, and/or b-complex might be of value in reducing your muscular twitching. also do you know how much calcium you're getting lately? gtg right now but i'll be back ciao
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Postby pinda » Sun Aug 03, 2008 10:03 pm

Thank you Marie and Jimmylegs for your posts. Will look into the adaptive devises, maybe something to help. Had not thought of. Have a friend who uses the hands only one. Looked at my calcium intake just a few months ago and I was above what I needed. Do take Vit. D which should help to absorb. Will look at the others you suggested Jimmylegs, thanks. Linda
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Postby Terry » Mon Aug 04, 2008 4:32 am

still feel the need to know what is going on with me


My diagnosis was very quick, and I still feel this. Having the diagnosis perhaps opens the door to treatment of symptoms, but the uncertainty lingers.

Hard to talk to family etc. about my feelings and frustrations re my illness.


Telling my family too much seems to hurt them. It is impossible for me not to think of MS often, since it is with me in every step and most movements. This board is good for me because I find a kindred spirit here. I can share, discuss, and read without risk of hurting those I love with the constant reality of the illness.

Wishing you good days.

Terry
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