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Papabear
Sex: M
Data Quality: 1 star
MS: 30 yrs
Type: Secondary Progressive
Sensation: Severe
Overall: Severe
Cognition: severe
Vision: moderate
Speech: moderate
Swallowing: severe
Upper limb: moderate
Walking: severe

Papabear

Male, 55 years
Seward, AK

Primary condition
MS
Type
Secondary Progressive
First symptom
Diagnosis
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About Papabear

My DX was not as easy to DX as I have other issues which made it hard for people to see or get past. I am an intersex female to male person who is insulin dependent. For more information in intersex please read here. http://www.isna.org/ it is to long to try to explain in here. I am an open book so please feel free to ask me anything. I my first sign was in early 80's. However having a mother DX with MS I ran and never went back to get my DX. Figured if I did not know I would beat it. WRONG!!!

Writing this bio of myself has made me see my first real attack would have been when I was in high school. I woke up that morning very stiff and hurting but figured it was just because I was tried from working on the farm. It was later that day while in PE class as we had been running that my legs started to hurt bad. Shooting pain in my legs I was told it was shine splits. However as I look back now it went away in a few days. Shin splits do not go away in a few days.

My next attack was around 1983 when I was talking my kids for a walk to the park something I did every day with them. This day on the way home my vision had gone from clear to blurry then to only seeing light. I had to go in to the store I was passing to have them call for help. I under went many test, I never went back to find out what it was. However I knew, as I had a mother that had MS.


I then spent years in denial about what was going on with me.  I would write it off as "I pushed myself to much the day before" or "did not get enough sleep cause one of the kids were sick."


In my late 30 other things started to happen to me, and it was during this time I underwent some blood work to find out I was born Intersex. A birth defect I was never told about but things in my childhood now made more sense to me. To make a long story short here my body was now going through early menopause and my body was rejecting female hormones. So on the advise of the doctor I started to take male hormones and things started to fall in to place for me for the first time things started to feel right in my life. I know now and understand I am not female or male I am both. It is not something I chose but a birth defect I was born with. IF you go to this site you will find studies and facts that more people are born with this then the medical community wants you to know.

http://www.isna.org/ Because of this issue is has made it hard to find doctors with an open mind to see me, to not be scared or see me as a freak. As I tell them this is a birth defect and they cannot catch it.


At the age of 40 I was told I had type two diabetic and was to watch what I ate and placed on metformin. I also started to tell my doctor that my head felt like it weighted 100 pounds. A few times a year I was not able to hold my head up. They did a cat scan and a MRI I was told I had no tumor but there was some spots on there and a patch of gray matter. I was going back to school to become a lawyer at the age of 41. It was after an operation that I had opened up a book and could not understand what I was reading. I was not able to understand what the Professors were saying during lectures. I again went to my doctor and was sent to a Neruo doctor and another set of MRI was done. It came back with the gray matter and a few spots but nothing they said they could put their finger on. It was at this time I told them my history and how my mother had MS and could this be MS.


Well to make a long story short, I have been to 4 Neuro doctors one of them being an MS specialist. I have been told by one that oh yes you have MS but when he started question me about operation I had and saw I was an Intersex person his tone changed and he said he could not say that until he ran more test, expensive test. I had one tell me I had ADL or MS but when it came back clear it was not ADL he would not DX MS. Even had one tell me it was all because of Diabetic (which is now under control) had one tell me it was Fibermyalgia. It was a PT person that told me I did not have FM cause I did not have the trigger point needed to have that. Again it was back to the drawing board.  I was given more test I have had them all. The MRI showed lesion, the spinal tap showed bands. But each doctor has their own sure fire thing that says to them MS my last doctor said he will say probable since there are bands and lesion but since the evoked test came back negative he could not DX MS. But was willing to say probable.


So that is where it stand as probable, however my OT and PT people who work with me 2 to 3 times a week have DX me as having MS as has my primary care doctor. All have seen me more then this one doctor who has seen me for less then an hour total in the last year. They have all seen me go down hill in the last year very fast and since I do not seem to have flare up any more they are saying it is SPMS. I believe I had RRMS up till the last year.


Today, I am in a power chair, I wear leg brace when I do walk as feet drag, I wear hand braces as well. I am learning to use adaptive equipment so I do not waste valuable energy.  I am being fitted for a brace that will help support my heard as my neck muscle are very weak. Which is causing swallowing issues. I am hoping to go back to school this fall, if all works out right. Not for law but for computers to learn to write better programs for the disabled.


I take following meds. Mirapex - for restless legs, Gabapentin for neuropathy, and Low Dose Naltrexone, other meds I take are for high blood pressure and I am on an insulin pump. Because I am on the Naltrexone I cannot take anything for pain. I have been on it now for 4 days; so far I do not see any change or help. I am in more pain because I cannot take anything for the pain.


Well I guess that is me in a nutshell, I live alone I have a chore worker that comes in and does the things I can not do any more. I try to keep doing as much as I can for myself. I tend to push myself too much with I am learning is not a good thing with MS. I do not intend for this illness to control my life as it did my mom, in the end her illness over took her body and she died, not from MS but from giving up and letting it win, and not fighting for the things she needed to fight it.


The hard part of this illness for me is the not being able to plan my life. Right now I cannot even plan something in the morning for the afternoon. However I do know that like anything in this world it takes time to learn about it and about your own body. I know that once I can figure things out I can take better control of my life. Like right now I know I have about a 4 hour time block when I can do things from about 11 am to about 3 before that my body not able to move around much and my mind is not working, after that I am tired and my body feels heavier and so I have to slow down. I do think clearer at night when all is quiet and I can put my thoughts down on paper. It is all a matter of learning my body and how this illness will affect it.

Update May 22, 2008

I am now full time wheel power chair, my left leg has no feeling,and hangs like a string from my body. I lost the use of bladder and bowels.
My tongue does not work well and if I can talk it sound like I am drunk. My thinking has become very slow... Everything around me seel to run in slow motion.  I am always tired but I can not seem to go to sleep.
I am now on copaxone started on May 19, 2008.

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Member since: Mar 31, 2008
Last Login Aug 16, 2009