Mayo Clinic Connect
Is anyone one discussing this diagnosis ?
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Thank you! My mom was not actually diagnosed with the Parkinson's part, but the cerebellar ataxia bit. We went to U of Iowa hospitals for several baselines before coming to Mayo. They had several initial diagnoses including alcoholism (nope), stress disorders and low blood pressure, which explained the dizziness. They told us later that she was difficult to pin down because of how slowly the disease was progressing (much slower than the expected rate, apparently). There were many symptoms of Parkinson's present, but they ruled that out fairly early on. I noticed weaving and slurred speech, as early as 2009, but I know she was presenting with confusion, poor coordination, specifically handwriting, as much as a year to 18 months earlier than that. She passed away February 2018, a fierce spirit to be sure. Of course there is an ocean liner of things I have left out, but again, if our experience can be of any help, I am happy to share. I wish I had known about this platform for answers or direction.. or just support!
To answer the last bit, yes, she did physical and occupational therapies – recumbent biking, walking of course, dexterity balls for her hands and fingers… continued until the rigidity would no longer allow movement.
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Your mom was a real fighter, @hoard, she set a great example, I'm sure. Did she have any swallowing difficulties that you recall?
She really was. She was a professional Girl Scout as a living, and lived it in a real way… also, her mother (another amazing woman, with a fascinating life) had an always sunny outlook…no matter what! Mother started on thickeners to varying degrees for about the last year before passing. Honey thickness at the end. We had expected much more difficultly earlier on, but it really took quite awhile to be truly disruptive.
Here is the link I provided in the above post that will explain it a little, https://www.webmd.com/parkinsons-disease/tc/parkinson-plus-syndromes-topic-overview#1
I was initially diagnosed MSA; A few months later another doctor disagreed and changed the diagnosis to Parkensons (what a relief ). Since then when someone asks me what MSA is my response is “Parkinson's on steroids”.
(MSA is the acronym for ‘multiple system atrophy’)
Hello @gwgrover and welcome to Mayo Clinic Connect.
I'm pleased that you posted in the Parkinson's (PD) discussion group! I, too, am glad that your diagnosis is Parkinson's rather than MSA, I'm sure that is a relief.
I look forward to getting to know you better. If you are comfortable sharing more: How long ago were you diagnosed with PD? What were your initial symptoms of PD? Have you been involved in physical therapy (like the LSVT program)? Are your PD meds helpful?
Diagnosed July 2015. Initial symptoms prior to diagnosis were tremors in left (writing) hand. First disturbing symptoms were involuntary shaking of my legs. Physical therapy, not specifically for PD; don’t know what the LSVT program is. The first med was carbidopa/levodopa; it does a good job of controlling the involuntary leg movements. The memory med (memantine) appears to be helping.
With the legalization of hemp, I wanted to try CBD, but I appear to be allergic to it.
Hi, @gwgrover – I wanted to join @hopeful33250 in welcoming you to Mayo Clinic Connect. Glad to hear you have confirmation of your diagnosis now, and that your medications are helping with the involuntary leg movements and memory.
Hoping that @pammettee @hoard @lsdempsey @pcolunio will return and share a bit about their road to a diagnosis and any challenges along that journey. They may also have a comment on trying CBD and your apparent allergy to it.
How are the tremors in your hand now?
The tremors in the left hand, are not bad, but the did get to a point where writing was a problem, so I started working on working on using my right hand for writing. Also, when “out-no-about”, I try to refrain from handling any thing that is breakable.
I have reason to suspect that the allergic reaction was in fact due to a delayed reaction to a blood pressure med I was taking; I started with CBD at approximately the same time; the literature about the BP med included info That an angioedema reaction could occur even years after starting taking the BP med. The angioedema attack occurred after the second dose of CBD.
THE PROBLEM: When I arrived at the ER I informed the ER doctor that I was taking CBD. The ER doctor said to stop the BP med (which I did). This raises the question “was the CBD a ‘trigger’ that lead to the BP med angioedema reaction; or was it a reaction to the CBD – or both?”
THE PROBLEM: The ER was at a facility that was strongly opposed to marijuana products (hemp, is a member of the cannabis family; the CBD was from hemp) .
How can I safely determine whether or not I am, indeed, allergic to CBD?
I certainly do not know how you could determine an allergy to the CBD. Have you thought of consulting an allergist?
I have recently been diagnosed with MSA-C. I was previously diagnosed with Parkinson's. Some of the issues that I am experiencing are; difficulty focusing my eyes, blood pressure fluctuations, constipation, rigid muscles, tremors, and sleep problems. Some loss of memory seems to be an issue according to my husband.
In November, I was hospitalized for 7 days. My blood pressure was getting very low and I passed out, fell and broke my leg. I am now on a blood pressure medication to raise my blood pressure. I have also been taking Carbo/levodopa for the tremors and it still helps. I take Amatiza for constipation and use 'Miralax' when needed. I began taking Gabapentine for sleep and restless legs. CBD with 5 percent THC has helped with the rigid muscles.
Taking it day by day now.
Hello @mzpattilyn, I admire your last sentence where you say, "Taking it day by day now." That is so important when we are faced with a difficult health disorder.
It sounds as if your MSA-C diagnosis has affected many different areas of functioning but you are dealing with each of them with medication or OTC products and/or supplements.
You mentioned difficulty focusing your eyes. How does that affect you, for example, when you read, when you climb stairs, etc.? Do you wear glasses with prisms in the lens?
I was writing notes, the first time I had trouble focusing my eyes. Everything that I was looking at would move around and I could not pick out one thing to settle it down. Eventually the words would stop moving and I could write more for a couple of minutes. I have not had the problem while doing anything else yet. I do wear glasses. I do not know what you are referring to when you say prisms.
@mzpattilyn I've known many PD patients who have difficulty focusing because of convergence insufficiency. An eye doctor can decide if this is your problem and if prisms would help you. They put them in the lens of your glasses to help with convergence insufficiency. Here is some information from Mayo Clinic's website about convergence problems and the different solutions (which include a prism in the eyeglass lense).
Will you let me know if you have any success in treating this troublesome problem?
When you last posted you were having problems with focusing. Have you had any successful treatment for that problem? I look forward to hearing from you.
I was thinking about you and wondering how you are doing. Are you still having the angioedema reaction that you discussed last year?
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