After listening to this neurologist totally disregard what I know about my body – I mean since I have lived with this for 18 years – that does not count at all people!!! Mind you! I am not a professional! He treats me like I do not know what I am saying and tells me this in his manly squeaky voice – if you do not like the way I do things in this office I suggest you find another neurologist after waiting almost 4 months to get in to see someone and proceeds to tell me why I am wrong. I love these people I really really do!!!!

Ok peeps – as said in this wonderful informative magazine – the name of this article is “Getting a HANDLE on MS Pain”. What a huge lifesaver. I know now I am not going nuts. I do have pain. I do I really do! The article goes on to say that the pain cannot be measured – I agree 100%. Everyone has their own pain. My pain is the constant numbness, tingling, muscle spasm waking up having to stretch but the body is locked in this mind numbing spasm that does not allow me to move for a good 30 seconds. Every morning when I stretch I constantly remind myself my neurologist I just love him so (extreme hatred for the man really)…… he knows what he is talking about – I cannot move because I am in pain, but he is right there is no pain with MS! Honestly!

Stay healthy – stay focused – stay strong

Until next time!

I advocate for myself more and more because neurologists are not always right. They do not know everything about MS – MS is a mysterious disease. My current neurologist that I just recently met because of an MS attack told me that he does not believe I have MS – after countless of MRI’s since 1991, the reports confirm I have it – he still doesn’t believe me. He wants to do a spinal tap to rule out things. PULEZE! Why! I have had over 10 MRI’s in the last 16 years – and each one says I have it there is “no doubt”  written in the report. Oh and he said that there is no pain with MS. WHAT! Please! What a douche bag I thought. He had a huge attitude when he walked in the room. My friend who brought me because I could not drive due to my hands not cooperating was not happy – she even sensed the doctor had a huge attitude. I wish I could reverse roles on them and make them feel like you are worthless – but then again, no one can make  you feel that way but you! I got my shots in here and there and he quit the attitude after I started telling him my history.

Intersting even people misunderstand too. I recently shared my experience about my doctor’s visit on my blog and I found out from another good friend that this person told her that I don’t have MS! Peeps need to read the lines carefully before making comments about my health. I thought how funny first numerous neurologists now certain people. When I shared my symptoms with people on my blog, one person told me that this person told her I was so bad off I was not able to do anything anymore. I think – ok – still need to educate and make other people aware how sensitive this issue is for some.

Until then.. Stay Healthy! Be Strong!

The examination started off with the doctor saying I do not have any of your medical records so I am not able to make a proper diagnosis. I told him I brought some records with me but he dismissed that. Hmmm interesting. I started to tell him what was going on and before I could finish explaining my symptoms he rudely cuts me off and says I do not think you are having an MS attack! I am thinking to myself what a complete ass after all these years I still get Dr. Idiot’s who claim they know everything about me and can make a diagnosis magically without any medical records whatsoever!

I tried to explain to him about the pain that I was feeling. The pain was like having ice water run through my veins and to describe what I had been going through the last 3 months. He said oh there is no pain with MS. If you are experiencing pain it is not related to MS. He cuts me off again! What the hell! Now I am fuming, especially having a super crappy meeting at work, this doctor was just icing on the cake. He then proceeds to tell me if  you do not like the way I do things, I suggest that you find another doctor. Why would I do this after waiting almost 2-1/2 months of trying to get an appointment to see someone?!?

I told him that I disagree with his theory that there is pain associated with MS especially with me. I got through the examination with the usual pokes and prods, touching your nose, coordination, balance tests. He says oh yes, I see there is some weakness on the right side – oh now he says ok she might have it and some of the symptoms I told  him relate to MS in that way. Duh!

I am tired. Its been a long 20 years to argue with doctors and specialists who do not believe me after extensive MRI tests I have done and every single report says I have it. The visit ends with the same thing, blood work, EEG, MRI, doctor reports needed from another doctor. Oh he says yes, need a spinal tap done, which I do not agree to. He looks at me with disgust when I say no.

Well, he leaves me with make sure you keep a diary of what is going on with you. Nothing really new. Will go for testing next week, that should be interesting.

I am suffering from  a really bad attack that has affected my left and right hands. This attack has made me think of how much we take our hands for granted every day.

Doing the simplest things like taking  shower, holding  cup of coffee, cracking an egg, blow-drying my hair, buttoning or zipping up pants has made me re-think how I do things everyday. Even typing – I went from typing 110 words a minute to using my left and right pointer fingers to type words that take more than a minute to finish has sorely tried my patience the last two months. It has been difficult to sign which is how I communicate. My roommate has been absolutely amazing helping me with the simplest every day things such as blow drying my hair. People at work have been patient and awesome, opening up a stapler, peeling off backs to sticky labels to put on file folders. I am fortunate to be around people who understand what I am going through.

It has now been 2 months and 1 week, April 23rd was the day I was not able to use my left hand and then 3 weeks later my right side was affected. It is hard to stay positive and cheerful because I do not know if this is permanent – I am hoping it will go away. Here is the best part – I have to wait 6 months to see a neurologist as that is the norm here. Interesting. I bet the diagnosis from this specialist will be - ahhhhh! yep – “yep, you’re having an attack!” $300 dollars later. No! tell me something I don’t know. Hope I will get in to see a specialist soon.

Keep you posted. Stay healthy!

My MS Support Group got together to catch up on each other lives and to see how we all are doing. What was so nice was that one of the support members Katie offered the use of her home to have the meeting this time. We brought our siblings, spouses and friends with us to talk about what they go through when we are having a hard time dealing with different things that happen to our bodies during an MS episode or attacks as I call them.

We had lunch – some brought something to share we had the chance to talk about healthy eating. I introduced a new dish that I have posted on my food blog called Grain Salad which was made with Quinoa. Here is my blog link with the recipe http://blog.simplyhealthycooking.com/2010/03/06/quinoa-salad-with-dried-apricots-cranberries-coriander-cumin-and-lime-vinaigrette/ - I made some adjustments using things I had on hand. Instead of lime and sugar I used an orange. Instead of olive oil I used Grapeseed oil. The idea of this recipe is to see how easy it is to change food ingredients using what you have on hand. Everyone talked about how food affects their bodies, mood swings and the overall healthy feeling when changing the way we eat.

I was curious for my own benefit to find out what everyone feels when they are tired. The reason for this was my cousin who was diagnosed with MS also, said she often feels like she is drunk even though she had not had anything to drink. Katie said that she becomes very crabby and wants down time, Lesa said she her body becomes off-balance and cannot move as much, Myra said she just feels very off with herself and I shared that I become extremely agitated and my body automatically rebels to do more as I am always pushing myself. We all agreed that we need to listen to our bodies more. Karen my sister, shared that when she sees me like this – she knows I need to sleep. Once I get 1 to 2 hours sleep I am fine. I am able to continue with what I was doing before. Interesting analysis. I wonder what other people feel?

After lunch we met in another room so we could sit down and really talk and connect because it had been a long time since the last meeting.

I brought up some new medications on the market that was recently approved by the FDA. One was for Lesa’s benefit because she has much difficulty walking. The name of the drug is called Ampyra – I gave information to Lesa to discuss with her doctor. http://msassociation.org/news_center/article.asp?a=ampyra

Vicky – talked about her mom being a House of Representative and thought of having the next meeting in her home to show support? What do you all think of this idea?

Lesa – was enjoying herself and talking about many things with us. It was so good to see her – after almost 2 years.

Myra shared that she called the MS Society to see if they could help her with finding someone that can clean her home and help her do some things like food shopping and other things that we often take for granted. They were able to help her find someone – free of cost to help Myra do the simple things that is often a battle for most. http://www.nationalmssociety.org/chapters/MIG/index.aspx

Katie shared some valuable magzines that she reads to find out all the latest news on MS reserach, and shared her doctor that she feels a strong connection with her MS situation. Here are some of the magazines she subscribes to – go to the websites and subsribe to them so you can get their latest news via email or the mail:  www.msfocus.org and www.msassociation.org  – she also brought out back issues for Neurology Now and we all grabbed subscription papers – but you can subscribe online at www.neurologynow.com

Katie was talking with my sister and Myra about food especially MSG and the side effects it does to your body after eating foods with MSG. This conversation led her to bring out another book I plan on purchasing – Eat this and Live by Don Colbert M.D. – very valuable food information in this book – http://www.amazon.com/Eat-This-Live-DONALD-COLBERT/dp/1599795191/ref=sr_1_1?ie=UTF8&s=books&qid=1279467987&sr=8-1

Katie is lucky I did not walk off with the book and keep it for myself – Ha!

Vicky is one of our supporters/friend/driver/the everything person – she basically shared some of her mom’s experiences with MS and her knowledge of food and what is good health wise. Thank you Vicky.

Karen – my sister and supporter – shared her thoughts about what we go through and how she could not begin to imagine. She can only be there to support and do what she could to make things easier.  Basically words of encouragement to live by – Attitude is Everything”.

Our group session ended around 3:30 – all in all it was a great get-together

-Everyone wants to meet again next month – what is a good time ?? Please email me and let me know and where can we all meet so it is even driving time for everyone – in someone’s home – or what.

Until then, – Be Well

We met at her dad’s funeral. Her dad was my  mom’s brother and he had passed away, last summer. My sister, my mom’s cousin John and my mom’s brother - my Uncle John went to Wisconsin to pay our respects.

My mom’s sister, my Aunt Cathy was there and there was another person who I thought was my Aunt Cathy (lady on the left) - and it was not – she was my Uncle Leonard’s daughter Kerry (lady on the right). I was astonished at the resemblance of the Roach family clan – she really has that Roach smile.

We never really talked much but when she went back home, she told me she has MS. I was shocked – what are the chances of finding out someone in your family has MS. Most doctor’s will not say it is hereditary but my hunches and beliefs that MS can be genetic are dead-on. Why? On my mom’s side – her oldest sister – my Aunt Mary’s son has MS, my mom’s side – her brother my Uncle Leonard’s daughter has MS, and I have MS. On my father’s side – his two sisters my aunts have MS. Kind of ironic don’t you think?

I have been corresponding with Kerry off and on for over a year. I received a reply from her this morning – so thrilled to hear from her. This is the email. There are some things that I can relate to her situation. Hope that this can help someone. If it does please post your comments in this blog.

My first email to her: 

Hi Kerry, I saw your name in an email posting from Wanda and thought I would drop you a line. How is everything going with you? I am ok – dealing with pain that is related to my MS and Diabetes. I have medication that I take so hopefully the pain will subside soon. Drop a line when you can – am always wondering how you are. Hugs,Pam

Kerry’s response to my email this morning:

I have spent so much money on medication in the past month – over $300 – I am practically a walking pharmacy. Here is an interesting tidbit – I am 46 years old, I must have worn at least 150 band aids in my life time. But in the last month, my friend and I figured out a box of extra-wide sport strip band aids – 30 in a box – 2 band aids in the morning and 2 band aids in the evening , a total of nine boxes – I have gone through 270 band aids in 3 weeks. Whoo hoo – I wonder if I hold the Guinness World Book of records for the most band aids in 3 week? I could check – but I am too tired.

Oh yeah, I finally went to see a different neurologist. Nice lady but I wonder sometimes about these doctors. She says to me, I wonder if you have MS because some of the symptoms you classify are not in the same categories as people who do have MS. I wonder if these is diabetes related. Hmmmm, well I was diagnosed with diabetes 4 years ago and I was diagnosed with MS in 1991. Not sure how the two are related but ok – let’s do another MRI to confirm the results shall we. Another interesting topic – she makes all these diagnosis without seeing any of my records or previous MRI’s – I am wondering did I go to the right doctor? Gee - how many neurologists do I need to see and not only that – how many MRI’s do I need to go through and read the disappointing results, yes I do have MS. The legions on the brain are very consistent with the disease Multiple Sclerosis. I guess having this disease is disappointing just all the away around – with doctors, neurologists, MRI results.

Wait there is more — the doctor wants to know if I would consider doing the injections again. I said, well again, you are asking me something without verifying if I do have MS – interesting observation. I love it when they poke you with a safety-pin and says – “does this hurt?” – ummmmm YES!! you moron I still have sensations in various parts of my body – if I did not I would let you know! Hello!!!! Poke me some more I love doing that. I am hard of hearing, profoundly deaf actually - I love this one — close your eyes and do all these motions – how do I read the doctor’s lips and do what she wants and my eyes are closed? Interesting – the doctor lands up screaming at me – MOVE YOUR FINGER TO YOUR NOSE, CAN YOU DO THAT? After a few minutes, I open my eyes and say, I am assuming you want me to do these things? She just looks at me and smiles “yes dear that is right”.

Well after all that – fighting a bacteria infection – yay! and I go for an MRI on Friday which will take pictures of my brain, neck and spine just to see what’s going on. I love the MRI’s – but this one is an open-MRI not sure what that is – but will see because I am overweight – those MRI machines are very tight and I feel panic coming on in such a tight space – so hopefully this MRI will not make me feel this way.

Stay tuned for the results! Do I or Don’t I have MS? (sarcastically now)

Went to the doctor’s last week because there is crap going on with me. First thing was I did something stupid like cutting my toenail wrong and got it all infected and it is just awful looking – all red and icky. Had to go to the doctor to get the toe looked at and one thing led to another. I just love when that happens. Blood work, the usual pee in a cup get it all over your hands and have to wash my hands for kazillion minutes to disinfect them. I should do a survey to see how many people can pee in a cup without getting anything on themselves. That would be a very interesting survey.  Although my sister will probably think I am nuts.Now I have an appointment to see a foot doctor for my problem toes, and made an appointment to see another neurologist this will be my 8th one here in Michigan - I heard good things about her so we will see how that goes. That appointment does not happen til next month. I continue to suffer in pain on the skin until 3 more weeks. Can I handle it, yeah, have had it for so long what’s a few more weeks. It will be people thinking I am in a rotten mood for 3 weeks - not like they don’t think I am in a rotten mood all ready.

Ok, I think I am done griping for the weekend.

Yesterday I went with my sister to her softball practice game that she has with the women. I was their catcher while the pitchers were practicing and helped catch the ball for the women batting. I miss softball. I actually resented my MS yesterday. I was so angry that this disease has taken over my body and I am no longer able to do what I was able to do 20 years ago. I am sore today but it feels good in a way because I am not letting this defeat me. I know that I can never play softball again, but I can still practice throwing with my sister and bend and stretch as I work with her. Today, was a day of moving slow, but I think that as I work at catching and throwing the ball, I will build up my muscles again. Swimming will help me with balance in the water and build up my leg and arm muscles. Hopefully, things will stay on the positive side.

I went to a softball game the other night and I am sure the cold weather did not make things any better. People slapping me on the back, punching me in the arm and hugging me – I know they do not understand but it made me want to order a T-shirt that says “I love you guys too, but don’t hug, slap or punch me please”. I wonder if they will get the picture. I met someone who I had not seen in a long time. The last time I saw this person was at a CODA meeting and we shook hands. When we did that, this person squeezed my hand so hard I had muscle spasms up and down my arm for a while.  Oh well.

Today was a tough day. My body has not cooperated all day. I was not even able to grate parmesan cheese with a cheese grater. I needed someone else to do it for me. That is frustrating having to depend on someone else to do things for me. I hope this is just a  phase and will pass in a week or so. The weather is changing spring is here. I noticed that when the weather changes I go through changes – does that happen to any one else?

I hope that people will comment because I am very curious.