I saw a new neurologist just recently because I have been suffering from an attack for about 3 months now. Interesting visit since we all know that after living with MS for 20 years, you would think that the neurologist would treat me with a little bit more respect. When the doctor came into the room I felt that he already had an attitude not sure if he was having a bad day or not but honestly who cares if he was having a bad day, I have a disease that does not have any promise of a cure. Puhleze!! get over yourself I say.

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.

Hello –  it has been almost a whole year since I have written on my MS blog.  So much has happened since I have written last. I have moved to a different state because of work.

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!

Yesterday was a good day.

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

I met my cousin for the first time in my life in a very sad situation but it was a good thing for us (My sister Karen on the left, my cousin Kerry in the middle and I am on the right)

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:

Well, it has been a very stressful, hectic month of  May. As we know I have Multiple Sclerosis and now have Type II Diabetes. What is interesting about having Type II Diabetes is that no one in my family has diabetes and further research on the topic I found that Predisone or any type of steroid can cause diabetes. Does this mean – after all these years and attacks I took Predisone, sometimes in high doses like 80 to 100 mg’s a day caused this long-term effect. I am overweight because of the Predisone, hard for me to lose weight because when I exercise my legs feel like wet noodles. I have taken up swimming and found it to be a great exercise for me. BUT…. stupid me decides to fix an ingrown toenail on my third toe and caused the toe to become infected. Infection and diabetes do not go well together – it is now one month later and 3 toenail surgeries I am still fighting a bacteria infection. I am exhausted. I am in school full-time, it is exam time – mid terms for some classes and final exams for others. So much stress and I am sure the stress does not help matters at all.

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)