It's been almost 3 weeks since my appointment with my MS Neuro and I promised an update. I just went numb less than 2 years ago and after about 6 months of intensive testing was given tentative diagnosis of MS. No stage. After another few months, started some symptomatic meds. then a few months more, started more meds for spasms and fatigue. Mri's last Sept. showed no new spots in brain and no changes in size or shape of them, so doc doesn't classify them as MS lesions. The lesions between T2-5 are my MS which made me think of them as a CIS. Okay the recent check-up. Doc performed all the usual tests, walking back and forth, trying to stand on one leg, touching nose back and forth. Then some cognitive tests, which I was doing well, but couldn't remember all 3 of the items he asked me to remember as the first question. Husband then brought up that he's concerned about my balance issues later in day, transposing words and just going blank at easy questions. The classic, "What's for dinner?" (and I'm actually preparing it!) and I go blank. And there are notes all over the house. I'm keeping the Post-It people in business. I wanted to discuss perhaps starting some DMT therapy. That subject has been postponed. Doc says, depending on how the next 6 months goes, he will go to bat for me, but after 70 yrs old, there's a question if the DMT would be helpful to me. Some Neuro professionals believe they offer no slowing or stopping the disease and may be hard on my "older" body.
So, here's the report, mind you, I've never been given a stage. The doctor feels I may have completely skipped RRMS and am moving into Primary Progressive or even Secondary Progressive MS.(I'm shocked!) I've never had any relief of my symptoms, only a gradually worsening. What's next? I have an appt. in July for "NeuroPsychological" testing, then probably more MRI's in October as it would then be a year since the last MRI's. How do I feel about all this, confused, denial, trying even now to absorb all of the information. Reading resources here and MSAA. There is just not much available for folks like me. Being diagnosed at 68, was healthy, active, long distance cyclist. Active in my church.. all the right things, which doc says will be in my favor healthwise and if he goes to bat to get me approved for DMT's.
I do like your DMT, erash . I have been spoiling myself a little foodwise. Discovered a chocolate ice cream called "Death by Chocolate!" I swear, I could eat a whole tub, but would probably make myself sick by doing that.
It seems as if we gave a lot in common. Starting with our love of chocolate. I was diagnosed very late too, at 66. I Have not been staged but probably SPMS, as I never have remissions. I am 71. My neuro, at Stanford, was very clear that I should be on a DMT. He put me on copaxone, and then switched me to Ocrevus when it was approved. I would like to go to UCSF for a second opinion. Would you mind telling me the name of your doctor? I have heard before that I might be too old for Ocrevus. Its all so confusing. I recently had neuro-psychological testing. I hope you can go at your most alert time of day, as they are very mentally tiring. Don’t worry about what you can’t do or remember as some parts are very difficult. 🙏 Linda
If you can please message me with more details about the neuro testing. I think my appt is 9:30 AM and they said it would be about 4 hours. If so, I will have to stop at least twice during that time frame for meds. Hope I can stay awake!
When they had me do those tests it was 2 sessions 4 hour each spread over 2 days. It was mentally exhausting. The neuro-psychologist seemed concerned that I couldn't do some complicated math problems in my head, but that one didn't concern me at all. That's something I've never been able to do. Let me wright it down and no problem, do it in my head forget it. But others really concerned me. I couldn't remember items on a list and I struggled to do some very simple drawings. A great artist I've never been but I used to be able to draw circles, squares and triangles. I did them but they were really sloppy.
Thank you for the info. Maybe I'll start practicing drawing. I've always been bad doing math in my head. I'm like you, let me put it on paper and I'm fine.
Most of the testing was done by the doctors assistant. She read me very short stories and then asked me specific questions about the stories. Also she read lists of words and I needed to repeat as many as I could remember. Lots of picture matching too. She gave me chances to take breaks if I needed it. The next part of it was a long visit with the doctor. Lots of questions about how I felt, was I depressed, did I spend time with friends, etc.
9:30 is a really good time. After a couple of hours I was really, really tired. The doctor doing the test said I could come back another day but I decided to stick it out. It made more sense to me for her to see how mentally tired and forgetful I get after a few hours. I had to remind myself that I didn’t have to pass this test. It was just for their information.
And remember they probably give the same memory test to people half our age, so don’t be hard on yourself. It’s just more info for your doctor. Go home and take a nap afterwards. Maybe hubby cooks dinner or you get some healthy takeout. Linda🙏
It's a horrendous day for us anyway. Up by 2:15AM Leave house by 2:30 am just to be ahead of the bay area traffic. Hubby drives and I try to rest. We have a place to get coffee before we go to the appointment. By the time we'd get out of there, we are just ahead of the afternoon traffic. I take a pillow and blanket, usually falling asleep by halfway home. Sometimes we stop for early dinner, home and I go to bed and just zombie out. We could go stay the night, but we don't want to leave our kitty by himself for that long. He follows me around most every morning, sleeps at the foot of the bed, wakes up just long enough to make sure one of us is around.. Well loved kitty!😊😻😻
Make sure you tell them what time you had to get up. That’s a very legitimate reason to be tired. That does sound like a tough day. The traffic in and out of the Bay Area has gotten pretty terrible. It’s good you can work around it. We have one of those we’ll loved kitty’s too. I don’t like to leave her for very long. Keep us posted on how it goes.
Iona60 it’s all frustrating, confusing. I stayed so healthy, overcoming disabling affects of aggressive OA, 2 back surgeries, multiple knee surgeries including a replacement. Starting cycling 6-7000 miles a year! Then Wham! The MS semi truck slammed me! Having to explain meds to health insurance etc. mentally & physically exhausting. I know it’s like that for all of us, I’m just going through all of this and maybe having a little pity party!😊🦋🚴♂️🙁🙃
Vent! It's a shame that it takes determination and perseverance to get the insurance companies to pay for what they owe us! Many people give up. Hang in there.
I had to stop and think about it but I too have never been given a "type" of MS. When I was dx in 2007 I was just put under RRMS so that I could be treated for MS. I never felt any benefit from any DMD till I started on Rituxan. I expressed I thought I had a progressive form of MS and not RRMS and I was told they agreed with me, but if they dx me with that they would have to stop ALL treament for MS since at the time there was no known treatment for any progressive forms of MS. So I'm in the lurch to so2say. For me they knew for sure I had MS, which one didn't seem to matter. BUT I sure would be troubled to find out I don't have MS, but that is wishful thinking. I hope they find and answer for you ~terry
Thank you Terry, like you said and my doctor said, they are hesitate to say an exact form of MS because they know the ins and outs of treatments and insurance, etc.
Woh & WOW! Yeah, i feel ya, @ least you've been dxd, me i have been told by an N. P. Neurologist, def. M.S. don't know stage? & an othropedist, yes M.S. & my Primary M.D. yes it has Progressed. Then this past Fri. The 4th, i get told by an M.S. Neuro. Specialist, my lesions are not M.S. specific?!? What?! I definatley have all/symptomthere is for PPMS, so now she wants another M.R.I. of my lower Spinal lumbar& a lp who knows what for! I just wish some1 would properly dx me already...Good news all around though, i got approved for Presumptive Disability!👍 that will help w/bills & everythingthough...
Hope & Pray all goes well w/you too! Your in my Prayers. 😻🙏❤💚💜💛--Jazzinco
Calfeechick..oh miss you and all.i don't understand why it sounded like your doc was more blah say than I felt he should be.maybe not rushing into diagnoses level gives hope but do you feel listened to?it is amazing how because of insurance, etc,they have to jump thru so many hoops.for years the spots on my bra in were considered TIA'S ...not MS. what are you able to take without a diagnosis specific.you do not have to say..remember that we can all plead the 5th.i hope to check in with all soon.I took a dip again, off feet than walker pain too severe meds didn't work.getting to know the new you what you can or shouldn't do, triggers, full time work.sounds like your honey is very sweet.I love your new idea for each day....
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