Elderly Father and Diagnosis

Posted by kmikim918 @kmikim918, Sep 28, 2020

Hello Everyone, I joined here after searching for help for my elderly father, 75yo. He went to the ER about a month ago having numb fingers and toes, losing sensation in his hands and not being able to recognize objects with touch, but able to recognize pain. Often times his hands and feet get cold and he needs massage and movement to keep good blood flow. He's very weak when he gets up from sitting position and cannot walk long due to muscle weakness. He has said that his condition started developing a month prior and slowly progressws to getting worse and now is just Ina state of ok and bad days.

It has been a log journey so far and I feel that we're not even close to getting a diagnosis to be able to even start treatment. He has history of mini stroke which he got surgery for carotid artery stent. He has had blood tests including B12, blood sediment, carotid artery. The Drs rule out anything to do with his carotid, vitamin deficiency, inflammation or arthritis as all blood tests have come back normal. I feel like it is pointing to something neurological but can't be sure.

My question here is, if the length of time to get a diagnosis, is this usual? I'm very scared that if his condition goes untreated it will get worse and that he will become bedridden and I'm searching for advice on maybe what paths I can take to help him. I feel that he may have neuropathy, but after having read posts here it seems like a hard diagnosis to reach and I somewhat feel helpless to help my father get some type of relief. Is it something I just need to be patient with the doctors or is there something I can mention that can push the diagnosis path along quicker. I feel I need alot of energy to push and I'm not sure if this is the right path to follow. Any advice would be greatly appreciated.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Hank | @jesfactsmon | Sep 28, 2020

Hi, @kmikim918 and welcome to Mayo Connect. My name is Hank and I am married to a peripheral neuropathy (PN) sufferer. I have been reading/posting in this forum since January. My heart goes out to you and your father with this new ordeal in your lives. The things I am hearing from you are that your father has a history of mini strokes. There are a lot of things which can lead to PN. A lot. The mini strokes might be responsible. What you might do next is look for a diagnosis. There are a few medical ways to test for PN, and the names for the most known ones are "skin punch biopsy", "nerve conduction", and Electromyography (EMG) tests. You can google each of these. One most often sees a neurologist for any investigation into PN. You may want to schedule an appt. with one for your dad if you haven't already.

The things that jump out that it may be PN are the numbness and loss of touch in the fingers/toes (the longest nerves in the body, i.e. those to the feet and hand, are usually the first affected) and his leg weakness. I don't want to go into too much detail right now as to treatment options, but for starters you should know that having a good healthy low sugar diet is important as is eliminating smoking and alcohol as much as possible. It's good if he can keep getting some exercise and regular sleep. There is a lot to learn, about good supplements to take as well as medications which can be useful, which his neurologist should be able to bring you guys up to speed on (the meds I mean - supplement info you can get a lot of here on Connect and elsewhere online).

There is a veritable wealth of information available on Mayo Connect. Here is a link to the page that lists all of the discussions about PN:
https://connect.mayoclinic.org/group/neuropathy/
You may want to scroll through and look at the various topics. A wider set of health topics is available from the groups page:
https://connect.mayoclinic.org/groups/
The key to Connect is to keep paying attention as new posts are generated regularly through the day. You will likely find more people posting responses to this discussion that you have started. I wish the best outcome for you and your father with this new health condition of his. Very best of luck to you both. I have only given you a small kernel of the help you will likely find here. All my best, Hank

John, Volunteer Mentor | @johnbishop | Sep 28, 2020

Hello @kmikim918, I'm sure it must be difficult for you and especially for your father when you have not been able to get to the bottom of what is causing your father's symptoms. It's good that the doctors have determined that it doesn't seem to be related to his previous mini stroke and seems to be neurological. You mentioned he has some numbness and a loss of touch in the fingers and toes. Also, that he has trouble standing and walking very far due to muscle weakness. It can take time to get a diagnosis in situations where there is a lot going on. Does he have an appointment scheduled with a neurologist? It would be good if he could find one specializing in geriatric neurology which focuses on neurologic disorders common to this age group.

Has he fallen recently? You mentioned he has good and bad days (like most of us). Is eating OK and able to sleep OK at night? Sorry for so many questions and no real answers for you. Hoping we can find out more about his symptoms so we can have more members join in and share their experience.

kmikim918 | @kmikim918 | Sep 28, 2020

Hello Hank @jesfactsmon and John @johnbishop,

Thank you both for your replies. I have not asked him about his sleeping, I should ask about that.

He had not yet fallen but his gait is very stiff and a fall could be likely if he's not careful. He eats mainly one large meal a day, which is lunch, then a light sandwich or similar at night. He loves his sweets though especially Costco Sugar Bowl Bakery Madeline cookies. And as you mention to cut the sugar that is something that would be a hard habit to break.

He seems to have yet gotten to the stage of seeing a neurologist. As he's with an HMO, there is alot of back and forth during testing. I'm thinking we as a family should push the primary Dr for that referral and even better try to get one for a geriatric neurologist as you've suggested.

Thank you for all your suggestions, I'm relieved to have found you guys and appreciate the help thus far.

Hank | @jesfactsmon | Sep 28, 2020

In reply to @kmikim918 "Hello Hank @jesfactsmon and John @johnbishop, Thank you both for your replies. I have not asked..." + (show)

@kmikim918 Your plan sounds good, getting him in to see a neurologist is a good next step. Your mention of his love for sweets has me wondering whether he might be pre diabetic. I am not knowledgeable about this, just seems like a logical question, as diabetes is the most prevalent known cause for PN. Anyway, you can use that info if it helps unless you and his doctors have ruled that out already.

Please feel free to stay as active as you like on Connect, feel completely free to post questions on any discussion you find is pertinent to your dad's situation. Everyone here is both seeking answers and doing their best to help with answers where knowledgeable. Wishing you very good luck as you find ways to help your dad. Best to you, Hank

John, Volunteer Mentor | @johnbishop | Sep 28, 2020

In reply to @kmikim918 "Hello Hank @jesfactsmon and John @johnbishop, Thank you both for your replies. I have not asked..." + (show)

@kmikim918 Are you able to go with your father to his appointments? I'm fortunate to have a daughter that has helped me a few times by going with me so I don't forget to ask the doctor a certain question or so that she can write down any instructions or information the doctor gives me. It was a big help to me when I had my knee replaced a year ago in April and also this past month when I had cataract surgery. There is a great post by Laurie @roch for questions to ask a new specialist which may be helpful for you -- https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765