Central Pontine and extra pontine myelinolysis

@aithnie Thank you for your post and welcome to Mayo Connect. I am sorry to hear that you have experienced so many difficulties finding treatment. From your post, it appears as if you went for tests due to brain fog in 2009. If you are comfortable sharing, please let us know if there were any other symptoms at that time. I also get the impression from your post that other symptoms have been gradually progressive. I am glad to hear that you have an appointment at Mayo in August. I hope that you find the answers you need to deal with this difficult set of symptoms. Please feel free to continue to post as you seek answers, we are here to offer support and encouragement. Teresa

You are quite welcome Teresa and yes there were other symptoms and I don't mind sharing if it helps others. First of all, I lost my Dad in 2004/5 due to Alzheimer's Disease, which caused my depression and put a fear into me. I have had physical problems for a decade or more. The first one that appeared was loss of feeling in left leg (they thought it was due to spinal block. That a nerve was nicked). I eventually got some feeling back but it was like my brain forgot who to walk. As a teen I excelled in sports, favorite piece of equipment in gym was the balance bean; but, 10 yrs ago I couldn't walk a straight line kept tripping over nothing. Misplacing items because I was putting them back in the wrong place e.g. ice cream in refrigerator. Then I couldn't play Bridge or any other card game. I thought Wow I'm going to get Alzheimer's. My psychologist (for depression) referred me to another doctor for a 3 days of testing. I maxed the mental and hand-eye coordination; physically was diagnosed with low levels of sodium. Then the MRI, radiologist reported CPM and both he and the psychiatrist told me to get to my family doctor and a neurologist. My original psychologist said what do you expect, "you are a recoveringt alcoholic (16 yrs). You damaged your brain." Needless to say I stopped seeing him. Family doctor treated me for low sodium condition.
Between 2009 and 2016 physically/mentally got worse. I started choking on food and liquids sometimes to the point of vomiting. Had to quit bowling as left arm as well as leg got worse; also, my husband noticed I would stop breathing for seconds at a time and said Gail breathe. My guts were a mess and then the horrific bowel incontinence. Falls caused broken bones. Started having troubles going down and up stairs. I was treated diagnosed with syncope although I assured the doctors I don't remember any type of fainting. Went to cardiologist for arrhythmia and low blood pressure....he mapped my heart and performed cardiac ablation. They're thought was low blood pressure and ventricular arrythmia hitting simultaneously caused the falls or collapsing to the left.. Next I told my husband that we had to switch kitchen chairs to my right side peripheral vision couldn't see trees waving in the wind or cars going down the street because it was making me dizzy which led to my collapse to the left while sitting. Wait staff and Bruce noticed my eyes went wonkers fluttering horizontally off to ER then another brain MRI which noted original CPM and now EPM. I'm hoping all remains at least steady with no further medical deterioration so that Mayo can help me.

@aithnie Thank you for sharing your story. I'm sure that these symptoms must be frightening for you and that fact that you have not found any good treatment plan must be discouraging. I can understand why you are looking forward to your appointment at Mayo in August. One thought, however, has anyone ever recommended any physical/occupational/vestibular therapy? With all of these physical problems it seems as if you might be helped. As you do, I also hope that all remains steady for you until your August appointment. Best wishes and keep in touch with Mayo Connect as you are able. Teresa

Hi Teresa, no therapy at all for my conditions. Only had pt 10 months after my lumbar laminectomy with mech fusion - I guessed better late than never. As I mentioned in a previous post the doctors here in sw ND are behind the times or only allowed 15 minute consults.

@aithnie Perhaps Mayo will put a new spin on a treatment plan for you. I do not know much about this particular disorder, however, vestibular therapy and physical therapy seem to help. I've had a lot of symptoms of balance and right sided weakness, the final diagnosis was Parkinson's however the vestibular therapy and then physical therapy all made a difference as well as keeping active and exercising on a regular basis (probably a good idea for everyone). Best wishes! Teresa

You are so nice...and I am so looking forward to going to Mayo in August (I sort of wish it could be sooner as am very excited). Mayo sent me my schedule and will be there for 9 days; home 1 week; then back.

Oh, I do wish you well, @aithnie! Teresa

Hi Aithnie! Yours is the only comment that came up when I put in CPM. I had a brain MRI a few years ago which happened because of an MRI of my neck due to pain. It showed the Pons with the CPM yet I have never had any sodium deficiency requiring a too fast replacement which the Neuro said is the cause. I had other white matter in
other places also. A few years later I now have White Matter Disease due to Aterioscirosis (sp?)I too have spinal problems and had a lumbar laminectomy in 2001. I have gone on to so many injections and so much pain. Always told to avoid surgery. I also now have Peripheral Neuropathy. I used a cane for knee pain for a few years and had 1
replaced in 2011. I continued with a cane until taking some bad falls in 2016 and started using a walker. I still use it and can barely move my legs now. Everything has gotten worse and now my shoulders, wrists and hands are painful. Been told it is Carpel Tunnel but I wonder. I just can't win. There really are no answers but I seem to
have so many things wrong. I rarely go out as it is too damn hard. Now my eyes are seeming weird and I've had 3
sinus and 9 ear surgeries (Cholesteatoma). I think people think I'm crazy as how can one person have so much
wrong. My back is a total mess on every level now and at 72 I know no doc even wants to touch it. The brain business is what has scared me the most as the CPM in the Pons has no explanation. I don't know if Mayo could help me at this point. I feel so damn old and have lived so isolated for a long time. My family is good to me but I
have no friends left and really can't enjoy much as the chronic back, leg and feet pain has robbed me of any enjoyment. Sorry this is so long and too wordy but I never find any reference to this anywhere, Did you find any more out at Mayo? Perhaps Teresa did you ever hear back from Aithnie? Am I missing any other references to this on here? Thanks for listening! Pat