My last two eye exams showed limited downgaze and from there my eyesight hasn't improved making it hard to read for any length of time. My head, neck and throat always feels tight.
I don't have a neurologist because he didn't see what he wanted to see for Parkinson's and wasn't interested in my symptoms beyond generalized dystonia. He ignored the swallowing, choking, digestive issues and didn't even want to look at those reports. I KNOW something more is going on but he disagreed with me.
I started taking levodopa over a year ago and have good results for 4 hours. Then it's back to axial stiffness esp. in my head and neck but can make walking slow.
I'm seeing an eye specialist in February and wonder if his observations might offer a more definite diagnosis of Parkinsonism, which is what I feel could be going on, either MSA or PSP. In 3 years the slide downward had been fast but even though falls have happened they seemed not to be due to these causes and not backwards. I have to watch my feet as they seem disconnected to my brain and I think it's connected to my eyes and brain. I also experience a decline in understanding what's going on and connecting the dots if there are more than two. Being single with no family around makes it difficult. Any info. on what a specialist can do is appreciated.
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Thanks so much. Me too but I know it's more than dystonia and is not typical Parkinson's. Thanks for caring. I care about the people who are suffering with this disease and read lots of posts. If it had not been for healthunlocked.com I would not have known to try levodopa (mucuna pruriens). More so in MSA-P, it can help for some time yet, I hope. Not sure if it works for PSP or for how long if it's PSP-P.
Some will have better results with levodopa than others. Some may not have any results at all. A neurophthamologist, I believe is the eye specialist you're speaking of - a neurologist trained with eye movement issues. An MDS - movement disorders specialist would better serve you than a "regular" neurologist", but generally you'll need a referral.
He calls himself a Comprehensive Ophthalmologist. The area I'm in is limited for specialists and not like Vancouver, so I guess he is trained to see things that might be outside the boundaries of other ophthal's. Sorry I'm getting tired of typing. Yes I'm glad the levodopa works now and hope it continues.
I'm afraid what you've described does sound like PSP - the downward gaze problem along with the symptoms sound quite classic for PSP. MSA is more of a problem with internal organs so sudden drops in blood pressure, fainting, digestive problems are the early symptoms but not really the eye problem. However everyone is different and there are overlaps. My mother also doesn't have a diagnosis from a neurologist but I'm pretty sure it is CBD. I'm hoping for confirmation when we have an appointment in February. In reality it will perhaps mean that getting certain levels of care will be easier but others on this site suggest that this site is more useful than a neurologist!
That is what I thought as I do have internal organs that are definitely affected but not sure if it's the dystonia. My digestion is so slow a turtle could beat it with it's back legs tied. He wasn't interested in that or the choking and decreased tongue based movement. Baffling but all the websites mention it as a neuro. disorder and it's so uncomfortable to digest food I often don't want to eat. Well I feel like whatever help I can get right now is better than none. Someone is bound to listen. No fainting but heat this summer cause an almost. Thanks for your input!
A regular neurologist won't be of much help. A movement disorder neurologist is who you want to see. It is amazing that a regular neurologist is so specialized atypical Parkinson's is unknown to them. An ophthalmologist might pick up on PSP if they have had the training to diagnose it. Many people on this site have stories of not getting properly diagnosed for years. You are most likely corrected that something more than Parkinson's is occurring.
Yes I agree. Another different kind (eye) specialist might prompt an earlier appt. as the wait is so long in Canada...I'm hoping. Thanks for your support!
Those are good points Jeff166. My first Neurologist thought I had Multiple Sclerosis instead of the usual Parkinson's misdiagnosis. I didn't have the lesions on MRI so he wanted to wait to see how it changed.
It was a visit to the eye doctor to have me change Neurologist and the PSP diagnosis. The eye doctor first noted slow Saccades and followed that with the Vertical Gaze. He recommended a revisit with the Neurologist. I had just started using my VA benefits and they sent me to my current neurologist.
That's what I hope for is a ruling out of other diseases and maybe PSP. It seems that the downgaze can be a MSA symptom as well. I don't have insurance so it's a bit of a challenge to get the MRI's and other test unless there is good chance it's something serious. Thanks for the reply.
On a slightly optimistic note, levodopa is often not helpful for Psp patients, although that's not definitive. I'm very sorry you are going through this on your own. If there is any physical therapy available to you, that can be helpful in maintaining your ability to get around. Please stay in touch here.
I love to stay in motion but can't use the bike anymore. Sold it...but I do whatever I can. Have a bad knee. 😣 Sometimes it's OK and I walk but other days it seizes up. Ligament problem. Today I shovelled snow for exercise.
Have you seen a Neuro ophthalmologist? That doctor may be more aware of any eye movement issues. Jeff"s suggestion of a movement specialist neurologist is very good.
You might not be able to get a confirmed diagnosis but hopefully you’ll find a clued in doctor who is willing to treat the symptoms. Is it possible for you to see a Swallow/Voice specialist? I’m so sorry that you’re going through this. Don’t take no for an answer. The Squeaky wheel gets the grease!
Had a swallow assessment, fluoroscopy and scope done. Definite lack of motility. Surgeon who did the scope said he thought it was cricopharyngeal dysfunction of the upper esophageal sphincter, almost always a neuro. origin, a neurological problem. Was told if I had more problems to see a nurse about it. Soup is better than most solid foods. I cook almost all my own food due to celiac. Thanks for the input.
In all honesty ...they diagnose and then that is it...no meds no interventions, you plan for care for when you cant do things for your self. Im sorry but thats the truth x god bless
Our neurologist who specialises in cognition suspected my husband had PSP by his eye movement. He then sent him for an MRI Scan and a DAT scan. At a following meeting he confirmed PSP.
He said the slow eye movement was a telltale sign.
Because PSP is so rare, if you go to PSPA's website you will find info you can print off (hoping you have a printer) and bring with you to your appointments and share with medical professionals. I did this and they were very grateful.
I hope you don't have PSP but wishing you the very best if so.
That's a good idea. I am armed now. The change in reading has been going on for 2 years or more yet my prescription is the same. There is a shortage of specialists in this area hence the long wait. I recently moved and my GP is now too far away to see. It's like starting all over all though I can see him if I want to. He thinks it's Parkinson's but doesn't really know about PSP or MSA. Thanks for the reply.
My mom was diagnosed with PSP by a neurologist/movement disorder specialist. In addition to a definitive diagnosis, the specialist was able to suggest other resources available in the area. Her knowledge of PSP was very helpful.
Mom was diagnosed in February 2019, but we suspect she has been dealing with PSP related falls and other issues for about 10 years. She is now under hospice care as her disease has progressed quickly over the last six months.
Sorry to hear what you and her are going through. I have been reading lots on this site for awhile and it is heartbreaking. I know it takes a certain amount of courage to deal with this. AND lots of support. I appreciate the replies.
I am sorry you are going through this, and that it’s been difficult to get proper medical help. It is interesting to hear your first hand perspective on what is happening with you, and I hope you keep in touch here to keep us updated. A lot of the symptoms and the steps you’ve taken (eye doctor, swallow test, etc) unfortunately line up with my dad’s PSP symptoms and what we tried on our path to diagnose him. We had to fly to a different town to finally find a neurologist who could properly diagnose him after going through 5 or more in two different countries. Even after the diagnosis, we have switched through a couple neurologists to find the right management routine. If you do have PSP (and I hope you don’t), it will sadly take a lot of trial and error to manage this effectively - this forum might have helped more than the doctors did with that!
Yes I will keep in touch and I am learning a lot. THIS is my support group. It's of some comfort to know others are or did go through this with specialists and some are still posting while on this journey. That inspires me too. It helps to know there isn't a lot neuro's can do but I'll keep looking for answers. I don't know why but it would be of some comfort to know what it is I'm fighting. I guess it's human nature. Thanks for your post.
Hi. I don't know if you have a local PSP Association but contact the association who should be able to provide you with prism glasses to redirect your sight. There are glasses that are for either an upward or downward gaze. Here in Scotland we were supplied them free of charge. I am sad you are facing this alone so please contact PSP for support. In America you should contact Stop PSP. Good luck.
I have heard about the glasses so if needed hope the eye specialist will know about them. In Canada I'll have to find out who to contact re: PSP support. Thanks!
If I may suggest, and it seems that though the above replies your going there in any case, it is a neurologist you do need to see and the reasons for which the neurologist you spoke to cant find anything, doesnt mean that its not the right speciality to go to. Most of these deseases take as much as 4 to 5 years to diagnose, and the more rare they are (like PSP), the more difficult it is. If you can travel, try going to a neurologist that is in the biggest town and in a hospital, they are the ones that see more of the rare cases.
Concerning eyes, there is a very well defined test : "Eye movement tracking" through a dedicated machine. In PSP you loose vertical movement where its not so much your sight that goes done, but since you don't move your eye up-and down easily you have difficulty in skipping lines etc. It can help diagnose PSP, but its the neurologist (not the ophtalmoligist) that will diagnose.
Other persons pains don't help, but our first neurologist found nothing wrong with my wife and after going to 3 centres in Europe to the highly specialised neurologists, all 3 said my wife had a neurological disorder and all 3 said it would take between 4 to 5 years to diagnose. Diagnose actualy came after 3,5 years which is close enough. There are other deseases with similar symptoms and some of them are even curable like Niemann-pick type C which can only be excluded through complexe and long analysis. Hence its fundamental to be seen AND followed by a neurologist.
Advice well taken. I hope to be referred to one in Kelowna, BC. He is a movement disorder specialist. There are so few here and I cannot travel to Vancouver. I have been diagnosed with dystonia and may will see me for that and then hopefully we'll go from there and until after I see the eye specialist in Feb. which in any case will have to happen as the wait for the MDS will be long. Thanks very much!
I would suggest you try vitamin b1 thiamine hcl 1000mg after eating. I was diagnosed with PSP because of my eye movement and my freezing when I walk...I don't have any tremors,but fall approx. 7 times/yr.
I had started using Solaray 500mg and stopped it because swallowing pills was getting to be difficult. I felt better on B Vit's with the high dose thiamine hcl. Started again a few days ago. It's good for PD as well and just read where it's good for PSP. I also take tyrosine and lysine with it and the normal D3's and others. I should be taking it 2x a day. Thanks for the encouragement to get back to it.
Hi, my husband was seeing a "functional medicine doctor" in addition to his primary care doctor. She was very helpful recommending good quality brands for liquid vitamin formulations we could mix into smoothies or other texture appropriate foods as swallowing capabilities changed. Was particularly nice because I could order them online and did not have to search for them. Best wishes to you, this is a tough path to tread on your own.
I'm thankfully not at the worst point yet and able to handle it for now. I know it takes some years to diagnose so will have to be patient but each winter it takes a toll on me although I am getting around OK and can drive. Woke up the night before leaning to one side (Pisa syndrome) until I got to a sitting position in the bathroom and could not straighten up. It's happened before and I am asking myself, OK is this dystonia, MSA, PSP or PD? Take your pick. Symptoms can be so similar for each one and what point will it be obvious which one or multiple causes. Thanks for your concern.
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