My New Diagnosis and The Process of Figuring It All Out
I am now 48 years old and just today was confirmed to have Parkinsonism instead of the traditional Parkinson’s. I had gotten suspicious about three months ago and started studying the possibility. I then went to my neurologist with my facts I had uncovered and why I thought it might be possible. He quickly agreed that I might be right after we discussed everything.
We decided to start by me going off of the Carbidopa-Levodopa. I was on two pills twice a day. When I was diagnosed years ago, there was an obvious benefit when I was put on the Carbidopa-Levodopa. It was like night and day and that fact seemed to show that I had the more common Parkinson’s Disease, although I had it at an earlier age.
My suspicions began when I realized that my symptoms didn’t just stop getting worse, but I was actually getting better. With Parkinson’s, you do not improve (other than a bit with medications) and it is progressive. Mine was no longer progressing for well over 2 years. That’s not “normal”.
What had changed other than me going gluten free over 3 1/2 years ago?
I initially went gluten free to help my Parkinson’s because many especially with Early-Onset Parkinson’s believe that going gluten free can help reduce your symptoms. It did help mine quite a bit, but I also discovered that I actually have a gluten intolerance, too. I went off of medication for IBS, within about a month. I had been misdiagnosed as having IBS and before that as having Gastroenteritis. I had these two mis-diagnoses for well over 10 years and with 3 doctors.
I had also had a change in many medications. Over 2 years ago, I went off of Fluoxetine as well as some other medications that a previous doctor had me on (it turns out unnecessarily). He had me SO overly medicated. My current doctor took me off several and reduced other amounts as quickly as possible and I quickly got a lot better in many ways. I actually did not have depression, but was on 2 anti-depressants. I was in pain and fatigued, because I have Fibromyalgia (or something very similar with the same treatment according to my current doctor). Since my previous doctor was one that did not believe in Fibromyalgia, he treated me for some severe depression. It did not work. Go figure.
I have also had 4 concussions (from 4 different types of accidents in 1986, 1987, 1995, and 2013) worthy of hospital visits as well as quite a bit of head trauma throughout my childhood and teen years due to being in an abusive home where a common “discipline” was being slapped upside my head often causing ringing in my ears.
I have read in many locations that all three of these activities (medications, gluten issues messing up things between the gut and the brain, and head trauma) can cause Parkinsonism. There are actually other causes like different diseases, strokes, brain inflammation, or carbon monoxide poisoning.
So I am not certain which of these causes is the culprit for me. My doctor and I think maybe a mixture, but it’s likely mostly due to medication. It appears that the symptoms often go away within a couple of weeks but almost all symptoms that will disappear do so within two years. My concussions were not at the correct times to be the culprit in my case, but a lot of head trauma in general may have helped set me up for this. I do know that my first one caused something else that I am currently in the process of being diagnosed with. That will be addressed on another post.
My going gluten free definitely helped my symptoms. The fact that I started doing the same with or without the Carbidopa-Levodopa did not happen within the first two years of going gluten free, I do not think that was the main culprit.
The improvement did, however, happen in the timing of me going off of the Fluoxetine (Prozac). It was about 21 months after stopping it that I got to my present level of symptoms…almost 2 years. To me, this makes it look like I will keep my symptoms at this current level.
Parkinsonism is not supposed to respond to Carbidopa-Levodopa like Parkinson’s Disease does. So, why did I improve so much with it and now I do not? My doctor said that it is possible that the Carbidopa-Levodopa may have nullified some of the effects of the medication that caused my symptoms. That totally makes sense to me.
It is possible that some of my symptoms will get worse simply with age. I also read a few places that I could still get a diagnosis later of Parkinson’s (because some do) and then progressively get worse. Either way, I see this as at least a reprieve. I won’t be progressing right now and that is an amazing feeling! I honestly believe that if mine does get worse it will just be because of aging. I do not think I will go into traditional Parkinson’s.
The symptoms that I still have are: the slow shuffling and Bradykinesia (often takes more effort to get going…I call my shuffling my Tim Conway shuffle, because it reminds me of his old man shuffle he did on The Carol Burnett Show), tremor (but more noticeable nowadays when holding something – when at rest it is now much better), trouble swallowing, trouble at times forming words, balance issues when eyes are closed or it is dark (MUCH better than it used to be, but still a bit of an issue), spacial judgement and the corresponding clumsiness because of it – includes thinking that my foot is pulled up enough to clear a step or something… and it isn’t), my left arm usually doesn’t swing when I am walking like my right one does, I also find my left wrist and hand pulled up tightly, muscle issues, and I am likely forgetting something. Most of these are much better than before, but I still have them. They just are not getting any worse, which I am truly thankful for.
So, What Is The Difference Between Parkinson’s and Parkinsonism?
- Parkinsons.org.uk ~ Parkinsonism Fact Sheet
- Parkinsons.org.uk ~ Drug-Induced Parkinsonism Fact Sheet
- NCBI: Drug-Induced Parkinsonism
- International Parkinson and Movement Disorder Society: Parkinson’s Disease and Parkinsonism
- Medline Plus: Secondary Parkinsonism
- What Is Psychology: What Is The Difference Between Parkinsonism vs Parkinsons Disease
- Health Tap: Difference Between Parkinsonism and Parkinson’s Syndrome
- Share Care: Difference Between Parkinson’s Disease and Parkinsonism
- PD Aids: Could a Gluten Free Diet Reduce Parkinson’s-Like Symptoms?
- Green Med: Dramatic Recovery in Parkinson’s Patient with Gluten Free Diet
- Celiac.com ~ Is There a Link Between Parkinson’s Disease and Gluten Intolerance/Celiac Disease?