Anyone else out there dealing with neuro stuff mostly on their own?

Thank you. I’m just trying to at least get someone to review his reports and give us an idea of what is going on. We haven’t even gotten that.

It appears that you have the reports from the Radiologist that read the MRI's......is there a way that you can get the CD themselves as most physicians/neurologist prefer to look at and interpret the scans themselves. At least that is what I have experienced. There should be no questions/charges for these through the Medical Record Department....of course how long it takes to get them is another question. I requested the CD of two MRIs that I had done from a University Hospital and received them the next day. Shocked!

Hi!
Yes, I can relate. Due to numbness and loss of balance, I fell numerous times in 2023; broke or punctured several bones and organs. Each injury dealt with but, no one is dealing with what is causing the same symptoms you describe including neck discomfort. Now repaired humerus/hip is causing extreme pain if I move certain ways, I have vision loss in one eye, hearing loss in one ear which could be some of balance
Do you experience a numb feeling in your face and skull as well? An oral surgeon accidentally cut a nerve in my jaw 13 yrs ago and I also have numbness, nerve pain, and tingling whenever I am awake. No cure for that either. I have appt with my neurologist ( haven’t seen since 2022) July 31st. My last emg 2022 showed some non reaction in my wrist and elbow but I have no symptoms there. I take 100mg gabapentin 3 a day and 300 mg of bupropion Xl/HCl.
No one has been following these symptoms. In 2022 neurologist said not sure if peripheral neuropathy. Ruled out other diseases and said” we can increase gabapentin. Call me if you need anything” End of my rant but hope can relate.

Hi!
I also forgot brain slower at retrieving the word I am looking for. Was 2 hr tested 2 years ago, before my falls for any. Cognitive changes and scored extremely well. I think I would not do as well now. ❤️❤️❤️

Me. I have SS and my wife of 45 years abandoned me because of my bad health and divorced me for my money. Unscriptural abandonment and divorce. She took my house so now I live with my 95 year old mother. She of course has a load of her own health issues.

I am soo very sorry! Whatever happened to "for better or worse!" Besides being compromised financially/physically......you're probably better off without her. Are you able to find assistance with issues that arise from community services?

Please look up Superficial Siderosis. And go to Mayo Clinic/steve GRINSTEAD. You are right, I am better off. But it still hurts.

re original post, I can relate

I have been dealing with very serious illness since 1983.

Most of the time I have gotten very little medical care. (not by my choice).

Since 2005, I have been in a lot of support groups online.

This much I can say, that if you put in the work...doing research, trying therapies and on....

odds are very strong you will make progress, will identify the issues and you will get symptom reduction and move onward with your healing journey.

I have met many people who did not have much money, were alone and isolated....and still, maybe significant progress.

I have had many problems. With a back injury, I worked that injury with stretching and all sorts of therapies...3 - 5 hours daily for 2 years...before I found real solutions.

If you are prepared to make your health the single top priority and work very hard? Almost no one who does that, does engage with some levels of success.

So, there is hope out there!

Also, know this. That the worry of what might happen, is always much much worse than the reality, when whatever is going to happen, happens.

There is a quadriplegic man on my block. The gentleman is quite at peace and quite content. Even powerfully devastating illness can be met with peace and happiness. Wherever your journey will lead you, there is always hope. (and I have been very very close to death, many, many times)

Best of luck to you.

I suspect that our medical issues may overwhelm our friends and family members. I had a friend tell me that and it caused me hurt feelings. I took a break from the relationship to work on myself and it was a good idea. We now have resumed texting with plans to have lunch soon. I actually got therapy, worked on getting healthier and stopped mentioning my health problems so much. I rarely bring it up, unless someone ask me. I do report positive news about my health. I discuss my concerns and fears with my therapist. Right now, it’s working well.

Yes, I had a stroke w long term effects of paralysis of Left arm and Left leg, w other symptoms too. I have been dealing w my symptoms on my own, with the exception, of getting orders for Physical Therapy. No one addresses my other symptoms, some are intermittent. So they really don't concern about intermittent symptoms!