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| Brain Activity |
Needless to say, I had researched everything I could find on Parkinson's Disease, and it was with trepidation and a little apprehension that I arrived at the Neurology clinic. They were also held at OPD3, the same as urology and always on a Thursday. I was pleased that I was dealing with the same nursing staff. There were way less patients and I was first in the line. Spot on 8am, I was called and as I walked in Sister E pulled me aside and said she was pleased that I was seeing Dr. W, the HOD, as she was considered one of the very best neurologists in the Eastern Cape, if not the whole of South Africa. She would persist until she arrived at a conclusive and accurate diagnosis. I was in good hands.
I must mention that there is no simple test like taking a sample of blood to examine for Parkinson's Disease. It is rather a process of elimination of various Neurological diseases that could be relatively easily tested. It is more a process of very keen observation, testing of muscle strength, motor capabilities like walking, balance and a multitude of other physical tests. Obviously, the normal family and personal medical history is recorded in detail and so many, many questions were asked. She observed every little movement and nuance of my body even down to saying that she had noticed that I had difficulty in doing the buttons up while putting on my shirt. She went onto explaining every aspect of Parkinson's Disease to me.
Towards the end of the appointment, Dr.W analysed the three most irritating aspects of my current health. Firstly there was the incontinence caused by my urological problems and the constant pain in my upper legs and general pelvic areas. Secondly, there was the tremors in my right hand and problems that were developing with balance and strange, slow walking. (The balance problems I had always put down to being very deaf and various ear problems.) Finally there was my very short term memory and the constant feeling of a very light pressure on my head. I need to explain fully the short term memory. As an example, I have set alarm reminders on my mobile and tablet as to when I need to take my medication, five times a day. If I do not instantly move in the direction where I keep my medication, within five to ten seconds I will have forgotten all about the alarm and its meaning. The pressure on my head 24/7 (not in my head) is almost like someone has placed their hands, lightly on my head.
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| CAT Scan |
Then the Wet, Wobbly, Weird came into play. Although not ruling out Parkinson's, Dr. W said there was a possibility that I may have CPPS - Chronic Pelvic Pain Syndrome! She always told her students, when diagnosing Neurological diseases, they must never forget to remember Wet, Wobbly, Weird as a pointer to CPPS. The wet is of course incontinence, wobbly is the balance/walking issues and weird is the hand tremors, pressure on the head and memory loss, all of which I had! There is a way to diagnose CPPS and if I had it, all that was needed was a single, what is termed a "Golden" injection and I would be normal and all symptoms would vanish! To prove or disprove CPPS I needed to have a barrage of blood tests ( I think there were over 20), full body skeletal x-rays, brain CAT scan and a lumber punch. The blood and x-ray's where scheduled immediately, the CAT scan at Livingston Hospital for Monday morning and the Lumbar punch also on Monday after the results of the CAT scan. (Provincial Hospital has their own Cat scanners, but no qualified person to operate them! Again bad management by the Eastern Cape Health Department!) At this stage, I was hoping for CPPS however, doctor had not ruled out Parkinson's.
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| X-ray's of Skeletal System were done. |
The bloods were done, the x-rays were done and Monday I went to Livingston for the brain CAT scan. I was done by 9.00am and with pictures of my brain on disk, I headed over to Dr. W's Neurological ward at the Provincial for the dreaded lumbar punch. I handed the disk over to reception to pass onto the doctor and said I was scheduled for a lumbar punch. When I walked into the ward, I was hugely surprised. It was modern, immaculate and incredibly organised compared to the "war torn", shabby and dirty urology ward where I had the various biopsies.Evidently, when South Africa hosted the soccer world cup, funds were found to upgrade and modernise two of the wards at the Provincial, one was the neurology ward. As I walked past the Nurses/Doctor bay to the treatment room, I noticed Dr. W and other doctors peering at a computer screen, no doubt my brain pictures.
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| MSA Mask - Artwork thanks to Salt and Moon (https://sandsaltmoon.wordpress.com/2015/09/28/guest-doodlewasherafter-charlies-site-my-dad/) |
I sat down and looked at everything that was neatly laid out for the lumbar punch, saw the huge needle, and shuddered! I am a baby when it comes to needles, even when I need to have blood taken for tests, I look away and grit my teeth. Dr. W walked in smiling and asked how I was feeling. She sat down, looked me in the eyes and said, "No need for the Lumbar Punch, as you walked past me, I already knew you did not have CPPS from the blood and x-ray results, and you were showing another Parkinson's Disease trait that we call the Parkinsonian mask." Evidently PD sufferers from time to time show a blank expressionless face with staring eyes. On that day I was showing the mask. I was sad, not frightened, simply sad and I thought of Michael J. Fox, the famous actor who has PD and is plowing millions of dollars into research..
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| MSA CAT Scan showing "Hot Cross Bun" Indication |
Then I heard her say, you have a very rare disease, Multi System Atrophy. She showed me a print out of the brain scan and pointed out the areas that indicated MSA. At the time, I presumed MSA was another form of Parkinson's. Then I thought to myself, PD is not rare, many people have the disease. I knew that I had much research ahead!
I was prescribed a drug called Carbilev, a combination of Carbidopa and Levodopa to be taken five times a day 7am, 11am, 3pm, 7pm and 11pm. It is a drug used to calm down the tremors and muscle spasms associated with Parkinson's disease. There is no "time release" mechanism for Cabilev, therefore it is taken every four hours. One of the major research projects funded by Michael J. Fox, is to find a time release system for Carbilev. In other words, one tablet a day instead of many. A follow up appointment was made for six moths time.
Advice: Never Ever Take Your Health For Granted!
[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]
(Next Post... Did my world turn upside down? Full blown MSA)
Keep safe,
Neill
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
What a journey you have been on. Thank you so much for sharing your personal story and diagnosis. You will help others by sharing your experiences. Thank you and keep up the communication. My 80 year old mother was diagnosed with MSA several years ago and is now in a nursing home. Her deterioration is slow thankfully.
ReplyDeleteThank you so much for your comment. It is most gratifying to know that there are people who are following my journey and what ever I write may be of some use to others who battle with MSA.. till later
DeleteMy husband was diagnosed with early onset Parkinson's disease at 68. His symptoms were shuffling of feet, slurred speech, low volume speech, degradation of hand writing, horrible driving skills, right arm held at 45 degree angle. Things were tough for me, I too was diagnosed of COPD but now we both finally free from these diseases with the help of total cure herbal foundation, He now walks properly and all symptoms has reversed. He had trouble with balance especially at night, getting into the shower and exiting it is difficult. Getting into bed is also another thing he finds impossible. We had to find a better solution for his condition which has really helped him a lot,The biggest helped we had was totalcureherbsfoundation.com They walked us through the proper steps, im highly recommending this herbal formula to anyone who needs help.
ReplyDeleteI am a 51 year old female that just found out I have Parkinson's about a year and half, but I have been having signs of it for years, tremors, depression, body weakness. ECT. I honestly don't think my doctor was reading the signs because of my gender and age. A few years ago I had my shoulder lock up on me and I was sent to a P.T since x-rays didn't show any physical damage. My shaking was getting worse and I began falling. Only when my speech became so bad that it brought concern to my dentist was Parkinson's even considered. He phoned my doctor with his concerns about my shaking and balance problems. By this time I was forgoing shots in the back of my neck for back and neck pain to which once again I was sent to a P.T (although x-rays showed no damage) I was told I had a few spurs which were most likely causing the pain. Here I was feeling like my whole body was falling apart and doctor could not find anything wrong, maybe in was all in my head? My doctor even seemed annoyed with me and things just kept progressing and I just kept it to myself, why bother going through testing and them finding nothing? Well, it was after my second P.T called my doctor about the weakness in my legs and arms, by this time I have developed a gait in my walk and I fell more frequently. Only then did my doctor send me to a specialist and it was found that I had Parkinson's, and that I have had it for awhile. I think because I was a woman that my signs and symptoms weren't taken seriously and therefor left untreated for so long,I was taking pramipexole dihydrochloride three times daily, I Was on carbidopa levodopa but only lasted 90 minutes then wore off.I found that none of the current medications worked effective for me.I got tired of using those medication so I decided to apply natural herbs formula that was prescribed to me by my second P.T, i purchase the herbal formula from totalcureherbsfoundation. com, There has been huge progression ever since I start the treatment plan which will last for 15 weeks usage.all the symptoms and sign has begin to disappear .
ReplyDelete