Doctor appointment

[ncgardener799]

Its been almost 4 years and dozens of tests and many specialists and Dr appointments, still no conclusive diagnosis. PSP has been mentioned but not confirmed. My husband has not fallen, vertical eye movements normal,, he till reads the newspaper every day, distance vision issues, but they have been corrected with prism lenses in glasses.. He has some speech/voice changes, extreme fatigue, frequent lightheaded feeling. changes in handwriting. Tomorrow we see a movement disorder specialist for our second visit. Anyone have advise or suggested questions we might ask Dr or testing that helped with diagnosis? If you are in the US-, was there a particular hospital or clinic that helped with diagnosis? Thank you!!

[honjen43]

Hi ncgardener, just winging it here, so you get some thoughts going.

Has your hubby had an MRI or PET scan? They seem to show up brain anomalies in neurological system.

Has he been seen by a neurologist?

Movement disorder specialist may shed some light, and will probably help gait, etc. Exercise is one thing that is helpful for a time. They may not help with a diagnosis, as they will be treating the symptoms. If he is knowledgeable on PSP, then he is a gem!

Has your husband's handwriting got smaller? That is called micrographia. Indicates Parkinsonism, and is present in Parkinson's disease and I know is part of CBD.

Has he been given a brain aptitude test? There was 1 my hubby was given and showed up various changes in brain function as it was repeated. That in particular made me realise what ailed him HAD to be brain deterioration of some form.

If in US suggest you contact CurePSP as they may be able to put you in touch with PSP specialist in your area. And/or Mayo Clinic.

I understand just how you feel!! I know how frustrating it is to spend so much time with doctors who can't seem to pinpoint the reason for your husband's changes in health! I had to fight hard for an appointment, but Neurology was my best call when I was looking for answers. When I found a sensible answer to the chaos, then at least I could stop looking further and focus on the best way to help my husband through the months ahead!

My husband was finally diagnosed with CBD, but i don't know if that was correct as he did not have a brain autopsy after he died. The diagnosis did explain to me why he had so many health problems and helped me to understand how to help him. Not sure that all were relevant, tho.

Stay strong and keep fighting for answers!

Hugs

Jen xxx

[ncgardener799 in reply to honjen43]

HI Jen, Thanks for sharing information. So Sorry you lost your husband, My husband has had excellent health his whole life, he is 73. We have seen a neurologist, movement disorder specialist, neurological opthamalogist, and many other specialists. So far all tests including MRI, Pet Scan and Brain aptitude normal. His handwriting has gotten small and difficult to read. His progression so far seems slower than most I have read about so that may be part of the dilemma with diagnosis. I am sure his problem is neurological and hope we can get diagnosis so I too can just focus on plan for care etc. Sometimes no diagnosis has helped me be hopeful that he has a treatable disorder, but I think that is just my defense mechanism trying to help me cope. He has been prescribed Ritalin which helps for a few hours each day with increasing energy so he has been able to interact with our friends for short periods and go to church. Recently started on antidepressant and I am seeing improvement in his emotional state, more laughing and that is a great thing to hear !! We live in US and Mayo clinic has been mentioned , the one in Rochester Minnesota would require considerable planning as his fatigue and dealing with plan travel etc would exhaust him and probably me as well. Do you live in US.?

[honjen43 in reply to ncgardener799]

No. I live in NZ! It is perplexing when you don't get answers. Something is going on that isn't part of a normal ageing process!

Good luck!

Hugs

Jen xxx

[ncgardener799 in reply to honjen43]

Thanks again Jen- When symptoms first started I knew it wasn't just aging-he has always been active and always involved in projects. We are persisting in getting a diagnosis and grateful for the support on this site and Cure PSP. It sure is a struggle and emotionally draining. Thanks again for your friendly support. Pat

[SewBears]

Jen summed that up rather nicely. I don’t want to overwhelm you but a DAT scan will help determine Parkinson’s and an EEG will help determine epilepsy or maybe rule out Myoclonus. It sounds like you’ve already had a lot of tests so maybe these have already been done?

Questions most often asked of us coming from the doctor are:

Generally, physically how is he? Mobility?

Do you have any pain, spasms, where and how often?

How is his memory, cognitive and word finding. Good, fair or poor?

How is his appetite? Gaining, losing weight, or no change?

Is his personal care in tact?

Sleeping. How is he sleeping?

Any falls?

How’s his blood pressure?

If you have a chance to think about these questions in advance, it might help you to be more prepared to answer them and not be blindsided. Also, thinking about these questions might prompt you to come up with questions of your own to ask the doctor. Don’t be shy. Stay put until all of your questions are answered.

Unfortunately I usually walk away with more questions than answers. We’re still waiting for a definitive diagnosis. We’re told hubby has CBD, a bit of Lewy-Body and some Parkinsonism. It could be all three because they all fall under the same umbrella.

This is just my two cents. Good luck tomorrow!

Xoxo from I SewBears

[ncgardener799 in reply to SewBears]

Grateful for your input-I will try to post results of Dr appointment. Busy week ahead!

Pat

[bazooka111 in reply to ncgardener799]

Pat - after a few years, our diagnosis of Corticobasal Degeneration came from a great team at the Cleveland Clinic ... pray that you get some answers soon. (My mom started with handwriting changes, and her speech - had a terrible time trying to express herself - in addition to a change in walking; which has progressed)

Kim

[yellowmarlene in reply to SewBears]

Do you think a DatScan would be better than a PetScan? If so is that much of a difference to really matter. It's my big question right now for us. Thanks

[SewBears in reply to yellowmarlene]

We were fortunate to have both scans done. The PET scan ended up looking like Lewy-body and not PSP. This is very interesting because hubby’s symptoms don’t mimic Lewy-body at all. The doctor said that it was good to have the PET scan done because he wasn’t expecting to see Lewy-body and he would never have included LB as part of the mix of what is going on here.

The DAT scan ruled out Parkinson’s but we are trying a medicine called carbidopa-levodopa to treat stiffness and it’s helping. Carbidopa-levodopa is only supposed to work if you have Parkinson’s. So... he has some Parkinsonism traits, but not Parkinson’s.

All of this to say that his doctor is still convinced that hubby has CBD based on his symptoms and not based on the imaging. Confusing, right?

My notes re doctors comments about the scans:

Hubby’s DAT scan; Parkinson disease is a specific condition involving a specific chemical in a specific part of the brain. This shows that he does NOT have Parkinson’s.

PET scan: shows that sugar metabolism is lost, significantly throughout the brain. It could be a very unusual form of Lewy-body.

I think I may have mentioned that we walk away with more questions than answers sometimes and now maybe you can understand why.

I would recommend getting both PET and DAT if you can, but this is only based on our experience of what we discovered. I’m not in the medical field so I’m going to ask that you talk this over with your doctor and see what he/she suggests.

Maybe answers to the scans will be more clear cut for you? I hope so! Best of luck on your journey.

Xoxo from I SewBears

[yellowmarlene in reply to SewBears]

Thank you for sharing. Now I'm hearing from a psp ( close ) friend her husband is soon going to have a SpetScan, I hadn't heard of it before. How many years has your husband had psp symptoms? If you don't mind me asking and how old is he now?

[SewBears in reply to yellowmarlene]

Hi, Spect scan is new to me. Here’s Doctor Google’s 😂 response:

A SPECT scan is similar to an MRI study in that both can show 3D images and “slices” of the brain. However, whereas MRI shows the physical anatomy or structure of the brain, SPECT shows how the brain works. ... Both SPECT and PET scans show areas of the brain that are healthy, overactive, or underactive.

This sounds like a very promising test however Google also mentions that this test isn’t covered through Medicare. I’ll ask our doctor about it when we see him at the end of May.

Thank you for mentioning this scan. As for hubby’s diagnosis and such... Let me get back to you. It’s talked about on another post and when I find it I’ll try to copy/paste.

[SewBears in reply to SewBears]

Found it. Do a search on “I can’t find my” and scroll through some replies. That’s where you’ll find the answer to how long I think that hubby has had CBD. It’s not a cut and dry answer 🤷‍♀️

[yellowmarlene in reply to SewBears]

Thank you so much and good luck with your May doctor appointment. You take care

[Hidden]

Atypical neurological diseases are very hard to diagnosis. Symptoms can overlap. Larry went through a year and a half of tests without an answer. We are in Philadelphia. He started out going to a University of Pennsylvania hospital with no answer. I took his records literally down the street to Jefferson hospital. Saw a movement disorder specialist and got an atypical Parkinson’s disease diagnosis on the first visit then a PSP probability on the second. PSP seems to be right. The only way to truly know what is going on is to biopsy the brain after death. People on this site have found out that their loved one didn’t have PSP but another variation of atypical Parkinson’s. It can be very frustrating.

[Inparadise]

If you are on the east coast, Dr. Golbe is the PSP expert. On the west coast, Dr. Irene Litvan at UCSD.

[ncgardener799 in reply to Inparadise]

Thank you. We live on the East Coast, in NC. Could you please tell me Where is Dr Golbe is located ?

[Inparadise in reply to ncgardener799]

Dr Lawrence Golbe, Robert wood johnsin medical school, 125 Patterson st. New Brunswick NJ 732-235-7729.

[ncgardener799 in reply to Inparadise]

thank you!!

[Inparadise in reply to ncgardener799]

My husband’s uncle was a PSP patient of dr golbe.

[ncgardener799 in reply to Inparadise]

Thank you. Was Dr Golbe able to do anything to actually treat you family members PSP. Sadly , So far all the research I have done indicates no successful treatment for PSP. We lived in NJ for many years but moved to NC 20 years ago.

[Inparadise in reply to ncgardener799]

Neurologists can only treat the symptoms unfortunately. If you haven’t read “Last Dance at the Savoy”, I highly recommend it.

[SewBears in reply to Inparadise]

Hi Inparadise, Thank you for the book recommendation. I just ordered it.

Cheers!

From I SewBears

[SewBears in reply to SewBears]

Loved the book!!!

[enjoysalud in reply to Inparadise]

The neurologist in that book works at UCLA and treats patients.

[Inparadise in reply to enjoysalud]

Yes, and Dr Irene Litvan of UCSD Movement Disorders Clinic was also mentioned in that book. She is excellent, and one of the two neurologists that treats my husband.

[easterncedar]

Dr. Apetauerova at the Lahey Clinic near Boston helped us navigate the diagnosis and early stages. At least we were able to assure ourselves that we were doing everything we could; although nothing really helped, she had us try several courses of medication. Her diagnosis was, at least, definitive.

[ncgardener799 in reply to easterncedar]

Thank You

[Marilyn_cbd12]

Hello. Neurodegeneratives (if that is what his condition is) are difficult to diagnose with precision and in my view it is important to work with neurologists who have direct experience with PSP, CBD, MSA, Parkinsons, ALS, etc. My husband's neurologist at Mayo Clinic Rochester told us that he sees about one CBD patient each week; there are neurologists who never meet one CBD in a lifetime and don't have the breadth of knowledge that a major center can offer. We live in South Carolina. Am assuming ncgardener has something to do with the Southeast US. I'd recommend the Mayo Clinic in Rochester, Minnesota and the Mayo Clinic in Jacksonville, Florida. Jacksonville is about 3.5 hours by car from the Charleston, SC area and has a large neurology staff as well as an entire building dedicated to neurology patients. Mayo has a concierge who can assist you with finding lodging and other concerns. Mayo accepts private health insurance and Medicare, though they advise you upfront that their charges run about 15% higher than the Medicare allowed amounts and you will be responsible for the difference. There is a Marriott right there on the Mayo Jax campus, as well as a reasonably priced "apartment hotel" with suites for those who might be staying longer. The Emory University Brain Health Center (new center and generously endowed by local families) in Atlanta, Georgia, can be helpful although I understand that they now are accepting only patients who have been referred to them by an Emory-affiliated neurologist/internist. The way to use the "back door" at EUBHC is to make an appointment with an Emory-affiliated neurologist (if you call Emory Brain Health Center, they can give you names of same) and then ask him or her to refer you to the Brain Health Center for a consult. It's doable, but takes a bit longer. I have found that the Mayo Ciinic in Jacksonville was pretty efficient; last autumn, it took us only 3 weeks from phone call to an appointment there.

Marilyn

[ncgardener799 in reply to Marilyn_cbd12]

Thank you. We live in South Eastern North Carolina and Jacksonville Florida is an easy ride from here. We saw my husbands Movement Disorder Neurologist yesterday and she feels he has PSP, but is progressing slowly as its been 3 1/2 years and he is still reasonably functional, no falls. He has some eye movement changes in the past 6 months since she last saw him. We mentioned consulting with Mayo etc and she is more than happy to help refer my husband but does not feel we would gain any additional information that she has been able to provide. A stimulant medication and most recently an antidepressant seems to be helping with symptoms of fatigue and feeling sad. He has always been very healthy and active, so changes and limitations have been a tough hurdle for him to deal with. Thank you for your detailed response and friendly advise. Pat

[aliciamq in reply to ncgardener799]

My husband drove up to 6th year. We have been on the slow side, too. If and when falling becomes part of your life - take great care. Move your nice things out of the way bcz everything can be broken! Don't think he can control it - he won't be able. Darn that you are facing a problem. 😐

[Makua]

My wife was diagnosed with PSP after about 16 months and several neurologist. The doctor that confirmed it was a specialist MD (DO). She did a MRI that showed the brain stem looking much like a hummingbird, which is not what you want to see when looking at the brain. U hope this helps

[Cuttercat]

Duke has a good Neurological center. They diagnosed Charles. Also Chapel Hill. But we were Duke all the way.

There are many types of PSP. It sounds like he has PSP to me.

Cuttercat

[Boyce3600]

Mentions of clinics are made on the East and West coasts. What about Southern area? We r in Texas and UTSW Movement Disorder has seen him with a diag of Lewy Body after a PA doing movement assessment and someone doing a 5 or 6 minute memory question check and the Dr spending about 5 minutes before walking out. That was 2016. Today he has little to no speech, tremendous eye movement issues, blinkless staring, feeling around as if blind, walking decline, severe cognitive issues, rigidity that makes his now 125 lb. body feel like moving concrete. He expressed "I am a statue" ; one of very few statements. I read and research quite a bit and stopoed seeing neurologists when they they continued to say there was nothing they could do. His initial trial of Carbidopa/ Levodopa in 2016 did not go well. Our PCP had done MRI but MD doctor did not repeat, would not do imaging such as DAT, SPECT or PET and at last appt did not ask to see him walk, I found Dr Constantini and began the Thiamine injections, monitored by our PCP. 50 mg daily injection is the only amt he seems to tolerate and very well. By night, extreme fatigue again. Just in hospital for first ever aspiration pneumonia ...minor, they said, as well as a severe bowel impaction. He had a bowel obstruction in 2013 before anything else started coming to light..no cause was found. Then tested for Crohn's, but was negative. Is being sent home from Rehab...wonderful 2 week experience with wheelchair and hospital bed...such a shock. In bed has brought further walking decline but still can with 2 person assist. I have neuro trained PT thru Home Health and will continue with assistance from caregivers. I feel the puzzle pieces leaning more toward PSP, but am so frustrated with not finding Dr. who will help. Any suggestions, comments, are welcomed. God Bless you all!