Richard Pryor and Me: The Ironies of Life

[PinkPearls]

Hi Everyone,

Last mth I read Rain Pryor's memoir about life with her father, Richard Pryor. I remember how horrible I felt for him when I heard he had MS. Listening to Rain's inside story about how her dad deteriorated and looking at his before and after MS pictures made me want to cry. I remembered thinking, OMG that is an awful disease! Why would God allow anyone to go through that?

Well, life is very ironic. At the time I was reading the book, I had been dealing with various come and go symptoms for abt 6 years starting with a petechiae rash on my leg that comes and goes (never heard of this being a symptom of MS so may that comes from something else); night sweats that come and go, flank back pain, tendonitis in my wrists after having my daughter in 2008.

Because of these things and other mild symptoms, I had assumed other autoimmune diseases but not MS. But recently I've had tingling, electric shock, numbing in my left big toe, and the feeling that something is moving around in my legs, mild twitching in my legs when I'm sleeping, slight balance problems very now and then. Plus I was also DXed with ADD bk in 2009.

After doing more research I'm realizing that plenty of my symptoms resemble MS. Now I'm very concerned that like Richard and many other people, I too may have MS and this thought scares me to death.

Been from Dr to Dr but because my symptoms are sporadic no one can tell me anything. My ANA was borderline positive (1:40) so I was told to take the wait and see approach. My Neuro's nurse called me w/my Cervical MRI results and said, "The dr didn't find anything significant, just some disc bulging and a little inflammation. Nothing that physical therapy can't help." Okay is disc bulging and inflammation normal?!! Hello!! I'm currently looking for another Neuro and plan to request a brain MRI.

My biggest concern is that I fear what this disease will do to my body and quality of life. I have a toddler and I want to be able to enjoy life with her. I fear that as time progresses and if I do have this disease, my relationship with my daughter may suffer. I may not be able to participate in bonding activities with her.

Also, I'm a writer. Will I be able to continue to think and write with this disease?

Also, it's been about a year since my child's father and I ended things. I've been interested in dating and possibly marrying one day. Dating in this age is hard enough without a child and disease. But what man is going to want me with such a debilitating illness?

Sometimes I find myself hoping its something else that won't be so hard on my body. Cancer can go into remission and may not tear your body down. Yeah, maybe I can take that. Lupus can mess with your organs but won't tear your body and mind down - so maybe I should cross my fingers that its lupus and pray that it doesn't touch my organs? Those are the thoughts I have at night when I'm trying to sleep. But I know I would want neither of those things either.

Sorry if I'm whining or sounding frivolous because I understand that there are others who are suffering much more than I am. I just don't know what to expect and I truly can't see what else my symptoms can be. How do those of you who have it cope with it? I'd also like to know how your lives have changed but I'm afraid of those answers.

*** Moderator's note - line spacing added for easier reading. Many members have difficulty reading large blocks of text.

[CasinoKathy]

Hi PinkPearls, welcome to MSWorld!

Yes- this disease can be rather ugly, depressing and crippling. BUT--- that is not always the case. Everyone's journey is different. Some have a mild case years, all depends on where and to what extent the nerve damage is.

I've been diagnosed since 2007 and it still scares me some times. I try not to concentrate on the "what ifs". Whether you are diagnosed with ms or not, try to live everyday as full and happy as you can. I think any medical condition makes a person value life more and realize just how quickly things can change.

Since you have a child- I'm sure that you tend to worrry even more, wondering about her future, and your own future in maybe finding that special someone.

Try not to worry too much- it really doesn't help (but I realize that it's hard not to). My symptoms get worse when I get stressed and that's not good.

The symptoms you have described can be related to alot of other medical conditions besides ms. Sometimes that's why it takes the docs so long to come up with a diagnosis. I know that isn't comforting to hear--I had my first symptoms in 1994 and off and on till 2007 when, my leg was getting weaker on a daily basis.

I hope you get some answers real soon, and try not to worry about what might be in your future. Here's a quote I saw somewhere--- YESTERDAY IS HISTORY, TOMORROW IS A MYSTERY, "TODAY IS A GIFT", THAT'S WHY IT'S CALLED THE "PRESENT"!!!!! Good luck to you! Casino

[MaxGrey]

Although I don't believe in God your story reminds me of the serenity prayer:

"God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And wisdom to know the difference."

I think of the sentiment therein often. I have MS i accept it and i do the best at what I can control. That's all you can do even if it sucks.

I do worry about other things though too because its hard not to. Some of the same stuff like who wants to date a guy with a chronic illness that makes him limp, go numb, get dizzy sometimes dumb and sometimes emotional.

I will testify to how correct you are that stress makes things worse. I had never had a sign of MS in my 31 years before my fiance called off the wedding then a month later I lost my job. Then I got hit really hard and I'm just recovering 4 months later and losing the other job i got because of my flair.

I'd not worry about MS until a Dr actually diagnosis you as it could always be something else!

[PinkPearls]

I feel ya...

Thanks Casino and MaxGrey. You both touched on good points about how stress effects our health.

Like you Max, I too had a string of unlucky breaks that caused me a lot of stress:

• Being in an unloving relationship during my pregnancy,
  
• DXed with ADD when baby was 3 mths old (I wonder now if it was a misDX)
  
• Being fired from my job of 10 yrs and labeled a drug user after random drug test registered a false positive for meth (which happens with ADD stimulants on drug tests);
  
• Dealing with fighting that and not having any help.
  
• Major house repairs with little cash

All that turned into depression, anger, bitterness and worry along with 23 mths of unemployment and no insurance.

The sporadic symptoms that I had before all this became more pronounced around this time.

And now that I'm working again, I may still be affected by stress. Just looked at how much I owe on all these medical claims since I've been trying to get DX! Now my blood pressure is through the roof.

I wanted to get a brain MRI done but I may need to take a break from Drs until I can get these med bills paid down. I can so NOT afford all of this right now.