We are back from our trip to Mayo Clinic in Rochester, Minnesota . We had asked to see a neurologist who we had read about and was well versed in Parkinsonism . We did not see his name on any of the correspondence, but proceeded and figured we’d just see whoever they give us. We met with a doctor who fully examined Dan, asked many questions, and listened to our concerns. This took about an hour . Then he said he had to consult with the specialist we had asked for and they would be back together.
The doctor we had asked to see came in, and he also gave Dan a full neurological exam. He said in believes in all probability Dan has PSP. ( he is the only person to finially be willing to make a diagnosis. ). He explained the disease, gave us hand outs and suggested a new way to give the Medicine (carbidopa-levodopa ) . He explained that although he thinks this is probably PSP, he wants to leave no stone unturned. We will be going back next month for a special PET scan for which he may have eat No carbs for 18 hours before the test, a MRI, and a lumbar puncture to ensure that there is no infection that could be effecting the brain. The tests will be completed by 2:00 PM and we will meet with the doctor at 3:30 for the results.
Mayo is a bit like the Disneyland of medical care. I am happy we chose to take Dan there. With our local doctors unwillingness to make a diagnosis, I am happy to have a few answers and to know we are doing what we can .
I hope tomorrow is a great day and a little bit of sunshine brightens your day.
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Karynleitner
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I'm glad to hear it was a positive experience for you. I hate that my visit is 2 months away yet. I have started seeing a psychologist for my depression but I don't think it's helping very much. Now the cold weather is coming I think I will be more housebound and not looking forward to it at all
Your trip and consultation with two neurologists at the Mayo clinic seem to have been very helpful. You are mentioning something about a new way to give levocarb/carbidopa. Would you mind explaining as my husband is experiencing problems with this medication.
Sounds an unusually efficient place. Although a diagnosis of PSP is a blow at least you then have a positive to tell other professionals you meet along the way rather than them second guessing you all the time. God bless as you go forward. Marie
Absolutely , Dan is now unable to walk without someone holding him, has difficulty getting food to his mouth without a mess, is largely incontinent,, both his back and neck are rigid and he now keeps his head tilted to one side. He cannot even lift his legs into bed and barely speaks. We are still able to get him in the car if we have help, but i can no longer do that alone, I Iworry that by next year that will not be the case. I just keep searching for answers . I know they’re are not many, but every little bit helps.
It's amazing the difference you get from one medical establishment to another. My husband was diagnosed pretty quickly once he was referred to a neurologist. ( that too a year) as Marie said although it's a shock it's also a relief to gave an answer. I would also like to know about new thoughts on giving the LD drug. Wishing you both well when you revisit next month for further tests.
Dan has been taking 1 and 1/2 tablets of Carbidopa-Levodopa 25-250mg, (3 Times a day). It does not really seem to help much, if at all. With this dos he is getting a dose of 37-375.
Now we have been given tablets that are 25-100. He is to begin with two tablets 3x a day the first week, increase to 2 1/2 the second and three the third. At that point he will be taking 75-300 with each dose.
We had been told to take it 20 to 30 minutes before eating. He said to make the drug as efficient as possible to take it one hour before and two hours after eating. He told us to give it a try for about 6to 8 weeks. We are to use our own judgement . If it works we are to continue, if not, we can take him off slowly as we had started. He mentioned that this drug is only truly beneficial for 10-15% of PSP patients, but we should take it as efficiently as possible and give it a chance.
I hope this is clear, if not, I’ll try to clarify ,
Thanks for your interest. Thank goodness we have this site,
Thanks for the info, The new dose has altered considerably and I hope he is one of the 15%. What stage of this wretched disease is Don at, we have been told Ben is in the later stages but not quite sure exactly what that means! Sending you heaps of 'good luck vibes'
Thanks, I really do not know what stage Dan would be at. I asked the first younger doctor at Mayo and he said they really did not stage PSP, I get the most help from others on this site,
He is unable to walk at all alone, incontinent, his back is rigid and he leans way back unless he is pushed up and held, He can feed himself, but with great difficulty. I am careful to make foods he can handle. He says about 10 words a day, and has a hard time answering a simple one word question. His jaw seems stiff and he is tilting his head to one side., he cannot seem to straighten it out. He can grip handles but sometimes cannot let go. I know PSP does not cause weakness , but he seems to get weaker each month. The rigidity makes it hard for him to bend to a toilet. I used to be able to handle getting him in bed and now I need a little help, we have 4 stairs to get out of our house. I used to help hi. And now it is a two person job . He rides in my car, but getting him in and out requires 2 people. It’s a struggle.
Hi Karyn, Ben sounds as if he's slightly further down the path as on puréed food and hasn't fed himself for a few months now. He can't walk but can weightbare and I have found the standaid invaluable to transfer him from place to place (e.g. Chair to bed) especially when handling alone but you do need a good flat surface to wheel it about. I can no longer get Ben into front of car do have an adapted car and Ben travels in his wheelchair in the back. Ben has just started on Clonazipam to help with rigidity, it already seems to have helped but he seems a bit spaced out, hope this passes. The Parkinsons nurse said this was one of the best drugs for righty with Parkinsonism. Is it possible to get a ramp and rail to deal with the steps, it's all the stupid little obstacles that make life so difficult but given the correct aids can be eased substantially. We have a ceiling hoist at the ready so that when weight baring is no longer possible I will be able to transfer from chair to bed/ commode etc.
What became of the studies on Zolpidem. It seemed promising!
Ask the consultants what do they know about the connection between the drug carbiddopa levodopa and distonia. Once this condition has been elicited it cannot be reversed. From my experience I strongly urge not to use this Parkinson drug for any length of time once you have tried it and seen little or no improvement. It is bad news for PSP sufferers. Tempting because we hope and hope for improvement but it just causes added and severe complications. Look it up on the net. Then you will probably learn more than your consultants!!
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Sorry, that should have been dystonia. A condition of rigidity and locked joints and so painful. Bad news for PSP sufferers. Best wishes.
I think this may be some of what Dan is experiencing. He has terrible rigidity in his back and now his neck seems to tilt to one side . Interesting that this doctor said that if we see no improvement in the next 6-8 weeks we should take him off of the drug. Dan has never taken it for long because we have not seen much benefit
Well I'm sorry to say, my advice would be to stop the drug immediately. I cannot understand why consultants are seemingly unaware of these terrible side effects. My father suffered so much from this. We were in the unbelievable situation that we were unable to get a diagnosis until six months before he died. I sent his brain for biopsy which confirmed PSP.
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The only drug which I saw gave improvement was Rotigotine also called the neupro patch. Some people have severe irritation from the skin patch but my Dad did not. The NHS would not continue long enough with this for us probably because of the cost. I do not know for how long the effect would have lasted but whilst on it it was miraculous. That was my experience. Best wishes. Look that up too. X
My husband Jack was diagnosed at Mayo Clinic in Rochester, Minnesota. We were at the clinic for a week, saw several doctors. (MRI and blood work were done at U of M Ann Arbor ). Jack’s doctor told us by phone he felt PSP was a possibility just a day before we made the trip. I would definitely recommend Mayo if your diagnosis is still unclear. The doctors are amazing. We were able to see neurologist, rehab, speech therapist, and others in a few days and meet back with the specialist at the end of the week.
Jack is taking carbidopa-levodopa 25-250 3x day. Doctor has added baclofen for the stiffness which seems to help.
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Hello from Indiana, USA
Nilotinib in clinical trials for PSP
PSP Clinic
Does anyone have any results from a Clinical Trial they can share?
