[tshadow]

'02 I got right sided TOS. '06 I finally got surgery with Dr. Annest.

I had EMGs last week that showed my LEFT side is far more worse than my right ever was. Doc said it was from using left for last four years. My neuros were shocked. I've been telling them since '03 I think...

I also have left leg nerve damage and malfunction.

Today, I tried to walk, and both calves, feet, etc. would not work properly. So just like lifting a glass and dropping it involuntarily, I now have an immediate involuntarily leg-malfunction.

One of our top docs said two years ago that I had TOS, with an "unidentifiable rheumatic disease process" that was also be affecting me. He also said he wouldn't operate, and that I wouldn't benefit from surgery, but Dr. Annest did surgery, and I have had benefits of NO more headaches (great relief), better general circulation (which over the years can give me many benefits including avoiding any loss of fingers, etc.)

I finally had BOTOX on my right back last week. I did not hurt at all, to me. And, I am finding relief. It is actually my left back that now hurts - when it was all in the right.

I really suggest BOTOX, after having done my own research, and talking with top UCLA neuros.

Lastly, I cannot find a good home care person. Apparently, even though my insurance pays $24 an hour, the HC person only gets $9!!! So they are major flakes, and I actually feel unsafe sometimes. So with no care, I am having a hard time, and I just don't have the energy or level of pain to talk on the phone. My life is bedridden, as I fight for an inpatient program for PT and a new look at medications.

Thanks to going off Lyrica, I have lost 35 pounds, but I still have diabetic blood sugar levels - I did go from 455 to 386 to now something in the 200's, but I say beware of Lyrica - watch your blood tests closely. The work comp docs said NOTHING about the blood sugar, while my vision went fuzzy, etc. YOU MUST ask for faxed copies or mailed copies of these tests, and review them!

There are severe new financial problems, which I won't go into, but I really don't know what the future holds. I just have to have faith in God.

So I'm alone right now.

God bless you guys.

PS sugar free Pepperidge Farm cookies are so good, as is Dreyer's sugar free.

[gibbrn]

Hi,
TShadow,
Just a though......is there anyway they could test for MS or has this been done already.....you could still have this done just a question.....

take care,
you are in my prayers,
Victoria

[Jomar]

I wonder about a live in care/room and board thing?

I'm sure there are many widows or single women of a responsible mindset?? that might be more fitting.

that's what we did for my g-ma when she started to get Alzheimer's- had a elderly lady or 2 to share live in or semi live in care for her.
she was from the same church.

[HopeLivesHere]

Hi Tam,

Sorry to hear such bad news.
I know you were feeling better in some ways after the Rt side surgery.
Do you have any plans to have the left side done?

A similar thing happened to me. Hurt my right arm and the overuse of
my left arm caused severe TOS and frozen shoulder.
Seems like we can't win for losing.
I know you said circulation felt better in your lower body since TOS surgery - I could go for a little circulation -
I suddenly feel like I have no circulation in my legs and feet, it is a strange feeling, different than the pain.
Dr N. said I had peripheral neuropathy in both feet so maybe this feeling is part of that. I don't think so because of the leg involvement. The calf muscles cramp up and some of the time, I feel like I've been stabbed with a knife, just like the shoulder blades feel.
My legs have a mind of their own...walking is severely impaired as far as distance. Endurance is poor too. I see the doc soon.
Maybe it is because we do not walk enough? I know I've been sleeping 12-14 hours most nights - between those same wake ups due to wet sweat - Maybe some PT will help. Simple exercises.

Anyway, back to you, maybe this could be a circulation / muscular disorder.
An exam by the doc and some home physical therapy might nip this before it becomes a flaming problem. As long as they don't hurt you. It really needs to be diagnosed so you can begin treatment. If there is any. Losing the ability to walk is very scary.
You were vague when you said you were alone, so I'm not sure what you meant. I am sorry about the financial problems but I will have you in prayer for all of this. Prayer works. I sure hope the depression is not worse because of this, but it sounds severe to me.
You are very loved by your "forum family" -- I hope that gives you some encouragement and hope.
Come back and vent anytime you can or need to.
Hugs 'n love,
Hope

[tshadow]

There were two reasons for my post - to apologize to TOS friends for not returning calls, and,

to describe how weird my TOS is going.

I really think surgery is good, and botox is good. I think that I may be a little different than some, but a lot like You "HOPE LIVES HERE" and "OLECYN" - you guys are so similar to me...when I try to walk, or hold a glass with my left arm, the feeling is like my muscle has turned into one string, and the string won't work. It reminds of a broken marionette puppet. I DO walk alot within my own house because of my dogs.

I have been fully screened by blood three times now, to identify any immunological or rheumatical diseases. That's why Dr. Brantigan explained that there are many of these diseases that act like MS or ALS, but we haven't yet identified them or learned how to treat them, so until later, they are incurable - and there are many, in his opinion. And that seems to be the most logical explanation given to me by any doctor as to "what is going on with my body?????"

I REALLY want my old life back yet. After four years, I am now at a point where I feel like SCREAMING for my old life, career, trips and sex back.

So again I vent. I see several doctors next week about the diabetic situation, thanks to Lyrica raising my blood sugar so high - and only I looked at the results and said, "hey, wait a minute here." Now it is health issue #1 to my imminent group of docs...

I may sound very cynical, but I actually am thinking on how to regroup and reform myself within the limits of my disability. There must be some creative endeavor I can get involved with and take back my worth. Thanks for listening.

[astern]

Tam,

You have self-worth just sitting in bed!!!

I totally understand where you are coming from emotionally - I too dream of my old life and sometimes slip into forgetting that I'm 'limited'. Then some reality whips me back to who I am now. If I didn't have psyche counseling 1x mo. and group 1x wk. (for women w/chronic pain and depression), I couldn't deal with the new normal. I guess having Mom to look after also gives me some feeling of usefulness, but there are so many basic daily tasks that I can no longer do, some days it's overwhelming.

I'm concerned that you say you are alone now. Hope BF is still with you. If not, you will make it - just not in the way you expected. Your experiences (both professional and otherwise) make you valuable to everyone you may come in contact with. And one never knows what the future holds... there may be some family member who (God forbid) gets injured and will suddenly look to YOU for strength.

I know I see you as indispensible around here!
Anne

Hi Tam,

Don't give up. But you need a MD that will get to the root of the problem, right away.

I know the cells in my body are not right.

In the past week I am having tests to rule out others things as well.

Hang in their, Roz xxx