An oft used phrase is "It never rains, but it Pours". This could mean Bad or it could mean Good! In my case, Thursday was both, an awful day that ended very beautifully! I have spoken here before about the Up's and Down's we all go through. Let me tackle the down first.
I was first in the line, at 4.00 am to see my Neurologist for the six monthly visit. By 7.45am three Neurologists had arrived and started consulting. Guess what, the admin staff had mislaid my file and I watched patient after patient leaving to fetch their meds and go home. I could have easily arrived home by 9am, sipping a much needed mug of coffee. Instead I was frustrated, irritable and down right angry. By the time I did get to see my Neurologist at around 11am, I was trembling severely, walking like a drunken sailor who had polished half a dozen bottles of Rum. and my speech was so bad, even I could hardly understand what I was saying! This of course demonstrated that it is essential for us MSA'ers to stay calm and relaxed. The moment any pressure arises, our symptoms magnify many times over.
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| Carbilev 25/100 |
The consultation started reasonably well and the Carbilev and Lyrica (Pregabalin) doses were doubled. I had expected the Carbilev to be increased. It is the drug of choice for Parkinson's Disease patients, to stop the tremors. It does not stop the tremors in MSA patients, in the beginning of the disease it simply helps to calm them. Eventually the efficacy stops and the dose is increased until a maximum of approximately of 800gm per day is reached. I have been on the double dose since Thursday evening and the tremors have not calmed at all. We will see over the next few weeks. My neurologist for the day was Dr. I.. a charming man. We spent much time talking about the future development and progress of the disease and he spent much time asking about my support system and carer. He questioned me at length about my carer as he believed as I do, that they are in for a very stressful time and they too need to be acutely aware of their own health and strength, both mentally and physically. Now for the "It never rains but it Pours".
I was diagnosed with a second Neurological Disease! Peripheral Neuropathy! It is not officially part of MSA, nor is it caused by MSA, but I am sure it must be linked in some way. So what is it? In simple terms, the neuron breakdown in MSA affects the autonomous functions of our internal organs. In Peripheral Neuropathy, the nerves at the extreme parts of our bodies, Fingers, Toes, Skin etc. etc. break down. Rather than type reams about it here, I have published a page explaining in full this new disease of mine. It is published by the Mayo clinic. You can find the link at the top of this page, under Peripheral neuropathy. One more downer in life!
Neill
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| Guerlain Perfume Samples from Canada |
Now for the HAPPY aspect of "It never rains but it Pours". You go to a restaurant, have a great lunch and end with coffee. The waitron comes a says, would you like another Free cup of coffee. You expected one but ended up with More. In my case, as a lover of perfume (see previous post), a fellow Guerlain lover in Canada offered to send me a sample or two of some fragrances we cannot obtain in South Africa. I have always wanted to smell them. Well, after three months waiting and giving up on the postal services, the envelope arrived on Thursday and was waiting for me when I arrived home from my neurological visit! Once again, I was a very happy chappie and when I opened the envelope expecting a few, there were TWENTY Guerlain perfume samples! Only one of them I knew very well.. the age old Jicky! Thank you so very much Sebastiao Furtado Neto, you absolutely made my day! Talk about it never rains but it Pours! Ending a day on a high note always helps.
I have often talked about advocating and creating awareness for MSA. Yesterday (Friday), I was approached by a young family man of 39 who could possibly have MSA. We chatted via messenger on and off through the afternoon. Only in my previous post did I mention that one of the two saddest things for me, was it appears that more and more younger people are being diagnosed with possible or probable MSA. My chat with him yesterday proved two things. Being diagnosed or even the thought of MSA is simply an awful shock for anyone, and the help and support of all kinds is so necessary to help those new to the disease. One's mind goes through acrobatic loops and there are so many if's and but's to work through. Secondly the amazing work done by the MSA Trust and MSA Coalition is to be applauded. The FB Groups both open and private for Sufferers and their carers are an absolute Godsend! Thank you all so very much for contributing to the chats on a daily basis. Know that your participation IS helping others! [See the links to the trust and coalition on the left of this page]
[If you have not read the first post of this blog, I recommend you visit HERE and read in chronological order, it will make my journey a little clearer for you]
Keep safe,
Neill
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Multiple system atrophy (MSA) is a rare, degenerative neurological disorder affecting your body's involuntary (autonomic) functions, including blood pressure, breathing, bladder function and muscle control. MSA shares many Parkinson's disease-like symptoms, such as slow movement, rigid muscles and poor balance. Treatment includes medications and lifestyle changes to help manage symptoms, but there is no cure. The condition progresses and eventually leads to death. Read my Journey with MSA @ https://msainsouthafrica.blogspot.com
