Hard to Explain but Then Again Why Bother!

By bones18

1 min read

When I was 57 years old I was told my brain was that of a much older person's. Admitted for a spinal tap which was negative I was told to take vitamins.

I gave up

Pursuing the symptoms, which included weakness and using a walker, I was told the tests were negative. Over the years and many MS symptoms and two doctors literally fighting with one another, I gave up and decided to just live with all of these crazy symptoms.

Hard time digesting this diagnosis

Now I am 71 and diagnosed with MS. I was not looking for a diagnosis, I had given that up several years ago. Unfortunately, I am having a hard time digesting this diagnosis. As my neurologist says it was progressive but now is not doing anything, so is not being treated.

Why bother

My anxiety is pretty high as I do not know what lies ahead or if I am cheating myself by not being treated. I have a rare form of macular degeneration as well. Not sure how to ignore these diagnosis or what to do going forward. I recently spoke to a man who had been a dentist and he said, wow you are doing really great for someone who has had MS for many many years. So what do I say to that? Well, you should have seen me when this and this was happening. So then I say why bother!! I am doing okay at the moment other than this and this and this.... same old same old. Nothing changes if nothing changes.

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janhelpsu Member
Yes me too! 1st appt, the PA for the neuro came in first and said, " Hi, I am John, did you know you have brain atrophy?"
1. bones18 Member
 Yes JanhelpsU Doctor appointments can be devastating particularly if they are short on the bedside manner part. I hope you are feeling well today, I know every day can be different so I wish you well for TODAY. Thanks for commenting.
Donna Steigleder Moderator
<inline-mention user-id="4005066" username="bones18"/> , While a neurologist isn't going to make the MS go away, what they may be able to do for you is slow any further progression of the disease process. There is a new medication on the market that helps to keep the progressive forms of MS from being as aggressive, and while it can't necessarily give you back the lost years, so to speak, if you saw someone now, it might make your future years better. No promises but it's something to consider. <a href='https://multiplesclerosis.net/news/ocrevus-ocrelizumab-the-first-disease-modifying-therapy-for-primary-progressive-ms-approved-by-the-fda' target='_blank'>https://multiplesclerosis.net/news/ocrevus-ocrelizumab-the-first-disease-modifying-therapy-for-primary-progressive-ms-approved-by-the-fda/</a> The other advantage of seeing a neurologist who specializes in MS would be to discuss the impact of the disease on all your body functions and how that impacts your lifestyle. He/she might be able to suggest ways to make your lifestyle better based on other patient's experiences or resources he/she has used in the past. Just a thought. We're always available for a shout as well if you have a need. Ask anytime. Donna Steigleder, Moderator
1. bones18 Member
 Thanks for your reply. I saw the head of an MS Clinic at an outstanding Medical Center attached to a prestigious University. The Neurologist who referred me to him had been taught by the MS Specialist. He did not do a spinal tap. Talked about sarcoidosis, scleroderma, some other diseases. At second appointment he went into a rage about Neurologist referring people to him without MS and threw papers across the room. I started crying. My husband was in shock I think. The referring Neurologist wanted the Specialist to handle my case. When he threw the papers I gave up on Neurologist. At the time I had other Doctors at the hospital so did not make a complaint as I feared rocking the boat. When we first moved here 10 years ago I saw a neurosurgeon who said you have all the symptoms of MS. I said I had been down that road. So I went down it again and it ended with me being a nervous wreck and depressed. I was referred to the new Neurologist by my orthopedist who diagnosed me from MRI (brain) and neurological exam. I have been referred to P/T which my be my saving grace. Several years passed between seeing neurologist. I do believe I am now on the right path. Thank you so much for being part of this group.
2. Donna Steigleder Moderator
 <inline-mention user-id="4005066" username="bones18"/> There is no excuse for unprofessionalism! I don't care how much knowledgable or experience someone has. Report his behavior toward you as unacceptable. If he treated you that way, he probably treats others that way, and he needs to stop. You don't need to make a big deal of it, just notify the Patient relations person for the hospital of your complaint, and they can add it to the list of others that I'm sure are already in their drawer. It's the only way to get someone like that to stop the behavior. I'm very sorry you had to endure. It's a poor reflection on healthcare and delays you getting what you need. I'm glad you're seeing someone now you like and doing well. Best wishes for continued progress. Donna Steigleder Moderator Multiple <a href='https://Sclerosis.net' target='_blank' rel='noopener noreferrer ugc'>Sclerosis.net</a>
nwharris Member
Hi, I was diagnosed at age 28. I hope to reach my 68th birthday this April. My neurologist has also commented that based on my annual MRI, he's surprised I'm doing as well as I am. I get around at home using a rolling Walker and SmartCrutches outdoors. I've also tried several dmt's and am currently taking Gilenya which may or may not be credited with stopping futher lesions, etc. I deal with 40 some years of damage done, spasticity and fatigue, with cannabis and caffeine. Sadly, cannabis isn't permitted where I live, so I have to source it as best I can.
f5hwo4 Member
Wow you story sounds similar to mine, I had symptoms since my 20's and wasn't diagnosed until I was 55. I am 66 now and have every kind of auto immune problem you can think of rearing it's ugly head. I think the only thing I don't have is macular degeneration. My dad had it so my eye doctor keeps a close watch. Potter
toddlius Member
I understand. I'm still being treated, but I hear "changing your diet would really help," but honestly, I just don't don't care/worry about it enough to do that.
natalee Member
THANK YOU, THANK YOU, THANK YOU!!! ... My last 4 years has been all of this. The last 3 years 3 neurosurgeons, EMG nerve study, opthalmologist, my amazing dedicated PP, especially with the progression this past year, have telling me or I should reword it as preparing this is everything MS. First neuro was extremely angry with 2 neurosurgeons dismissing his diagnosis (Chiari! NO symptoms, absolutely no headaches what so ever, no flow restriction, kept referring to my right eye pain, double, contrast vision disturbances as migraines. I could close my eyes in the burning in my right eye would subside, like relaxing a fatigued muscle. (opthomologist 4wks later was confident it was the first optical neuritis flare up, it had subsided 4 weeks prior) Neuro demanded another opinion, and suggested I where a brace on my wrists for a couple of months to rule out carpal tunnel. This was six months after he did an EMG on my arm which ruled that out, as stated in his doctor notes that I told him to go back and look at. So I took a year break, after hand tremors, stupid brain fog, buzzing tingling in arm legs hand, left arm weakness, right hand extreme weakness, fine motor skills starting to struggle, my right eyeball stays numb now, multiple locations on face are numb, I went to a new neurosurgeon. He was the president of the hospital's board of Neuroscience he reviewed my 2017 MRI (for supposed chiari diagnosis) He was straight forward and advise me this is nothing, absolutely nothing Chiari. I told him I know, I'd already been told the same identical thing from two other neurosurgeons. But after a year break from brain doctor battles, the strange symptoms that are starting to happen more and more I felt I had to get another confirmation for myself. He spent quite a bit of time with me going over symptoms, time frame, and tells me everything about this is MS. He said it just has not reared its ugly head completely yet but it's going to. It could take a couple of months it could take many years. He asked if I'd done an LP yet. I told him no he said it would be a good idea it's not 100% but at least its another idea. He too suggested I read up and learn and prepare and understand what could go on with my body. He asked me who my neurologist was, I told him it was one of his colleagues. He dropped his head with a disturbing sigh, looked back up and told me to get a new neurologist and don't look back. He suggested a neurologist that will listen and work with me. I went to another neuro 2 months later. Yep here we go again, she dismissed everything with age. Refuse to do an LP because they're worthless and only 60% accurate, constantly referred to my doctor as just a primary physician, her neuro exams we're actually excellent. Her notes we're very good with describing what she seen is what is happening to me. My favorite one was explaining the numb eyeball lol... 6 months later, something strange started happening. Drop foot, majority of my right leg sensation is numb. I walk and it flops as if my brain is trying to tell my muscles how they're supposed to work while walking. Slurred speech biting the side of my cheek and my tongue on left side. Jumbling words, couldn't pronounce words, loss of words for a week. Got in for follow-up appointment with her and she prescribed me muscle relaxers for my leg told me my muscles don't relax that of a toddler anymore, and my lack of focus with my numb right eye is typical with somebody over 40. I left her office in tears and fired her. 3 weeks my primary physician got me in for an EMG nerve study on my leg. What a phenomenal amazing doctor. Very thorough very informative. Everything I'm not feeling, is accurate inconclusive that of a neurological etiology such as MS. he encouraged me to read about progressive MS types of MS. A month later LP was done and it was negative. But over that last six months of what my PP is describing as exasperation my protein levels in my blood have been rising. The next blood test done three months after the LP, the igg protein levels where 300 over the highest normal really not sure if that's related or not but it's kind of a coincidental ) A year later and now with an MS specialist at U of U, he says my symptoms are rather normal even though they're not to me, and it's too early to look at Ms. Even with updated MRI identifying left front right and pridal juxtacoetical white matter lesions. He described the spots to be age spots. It's very normal from the ages of 40 50 60 to get the spots. He referred me for occupational therapy due to my tremmors and the dexterity test results identify my dominant hand to be one point from severely impaired, and my non-dominant hand is moderately impaired. He would like me to see a Parkinson's specialist to rule it out. Even though none of my symptoms are parkinsonian. Two weeks after my appointment I get a call from the University to schedule a 6-month follow-up MRI... Now since when do they do 6mo follow up MRI for changes on a clear good healthy brain? 5 wks of Occupational therapy was amazing he too identified everything about my world as that of Ms or a demyelination disease. Happily I saw the new neurologist (unfortunately a colleague of the first neurologist) and my brain is beautiful healthy, spots are spots, my neuro exam was perfectly normal, the original diagnosis of essential tremors is accurate, there's absolutely nothing of my symptoms that relate to anything. Only thing she could consider is a specific CT for early diagnosis of Parkinson's. But she would be completely surprised because none of my symptoms are parkinsonian symptoms. She considered my eye pain and vision disturbances to be that of silent migraines. (Even though silent migraines are short-lived, not for days and weeks at a time) and something she was reading from my previous neuros notes. Because I have not had eye pain in 2 years, and we did not discuss it as one of my primary symptoms. I explained to her about my EMG study and its results, she then began questioning what kind of doctor did my EMG, and it's a very bizarre way to describe it because you cannot diagnose MS through an EMG. I kind of got a little snarky back with her, and told her I am very aware of that but I am not a specialist that knows and understands the numbers for a nerve study but I do know my leg is numb and when he stuck the needle in my leg I didn't even know it, my work boots are worn down on the toe from sliding my foot, the front of my leg is numb my foot is numb the vibrations tingles pins and needles I wake up in the middle of the night start to walk and I fall because I have no leg function because I can't feel it.... I question your how is it that in the last 3 to 4 years all these specialists, medical studies you read about, and several people who have reached out to me have all suggested to read up and learn because this is "Ms in limbo." This fabulous last neuro said no that is not true, that does not happen, this is absolutely nothing MS and they wouldn't know because they're not neurologists... I remember a picture I took of my last MRI with a bright spot on the flair image, and black hole without. It measures 8mm. I asked the neuro what is this then, this was not one of the frames that we went through on my MRI that she claimed it was a beautiful healthy brain. She took my phone did a double check and asked me where was this picture at, I told her it's in that disc. She then tells me it's a FLAIR. I have way tell her I'm very aware of what kind it is, and that the radiology report stated Parietal juxtacortical. I asked you to please review all the images thoroughly including all of my records and results not just what she has on file from her colleague. She tells me she always personally reviews everything and that even looking at this she can confidently say this is nothing. Well that's another neuro fired NEXT!! ... I told my primary physician thank you but I'll pass. We reviewed my notes from U of U and the neuro specifies after reviewing the MRI images he would like a 6-month follow-up MRI to review changes. My doctor is going to call and speak with him and research this. Your story so similar to three people who have reached out to me within my community with an identical outcome. These three have become an amazing support team. (Unfortunately this new neuro was who one of them referred me to. Because it's their new neuro who is just amazing. She probably is, unfortunately I went against her supervisors professional medical advice. The only record she even acknowledged was his notes. Notes from 3 years ago. Nothing from the medical history I provided 6 weeks before this appointment) And I just learned three days ago my biological father had MS, and over the past 6 months deteriorated so much from the past 10 years extreme progression he passed away at the age of 64 beginning of February. I never met him, last I talked to him was 2004 when he had to stop playing guitar and mechanicing for living because the MS in his hands. Of course I had no clue what any of that meant. But as of this week his family describes it he passed away because of MS. Understandable comments from their world. But from the way it was described he had progressed rapidly. I apologize this is so long I just realized it but I wanted to say thank you for telling your story, and reassuring those of us in the early phase of a similar situation. ❤️
fitz1956 Member
I'm sorry to hear you've been going through this for so many years! There is an approved treatment for progressive MS. It's Ocrevus. I'm not on Ocrevus or even recommending it but I wonder if you should get a second opinion. I do use Ampyra to help with my walking and I do notice a slight difference with this drug. I also do a lot of physical therapy which has improved my walking. It's still a struggle but I feel that I'm better off than doing nothing. Please don't give up!