Hi everyone,Like most of you it's taken a really long time to try and get a diagnosis and a plan.
I started with gut issues and lots of weight loss. When things finally progressed my legs and ab spasms, an MRI found lesions. My whole next year was spent doing tests to rule out everything NOT MS and visiting a neurologist who introduced me to medical gaslighting at the end, he said I didn't have anything, though I had progressed to walking with a cane and suffering brain fog, loss of words and headaches. A visit to Mayo brought a diagnosis of PPSS, but no real treatment options. I now have a local neurologist who is relooking at everything again, while my symptoms have moved into both legs and I now get horrible vertigo regularly. I am told that no MS treatments will help since my lesions are inactive. I get meds for symptom control, PT and acupuncture.
Can anyone tell me what my road might be like and what I should expect? I feel like I keep getting worse but I'm sitting in neutral...
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Mazha
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Mazda, welcome my friend and I am so you are going through this as many of have during our early dx! I do have a concern about your Neuro being reluctant to put you on a treatment regime!!! The theory (If we describe it that way) should be to utilize Disease Modifying Treatment even when lesions are inactive to keep stability of health!!!! I have been stable for a two year period but my doctor wants me to continue with Copaxone!! Always remember we are the most important advocate for ourselves! If you don’t feel like your health needs are being met- please consider seeking another Neurologist (possibly a MS Specialist) and share your concerns. Blessings and Peace. NeeC
Given that you are in the USA and I'm not, I have no idea whether your insurance would cover the cost or not - the USA health systems are even more messed up than a lot of other places...........
I know Ocrevus sounds wonderful, but no doctor will prescribe it for me right now because they tell me its only for preventing new lesions and they all seem confident I'm not getting new lesions. I've just won the consistently progressing symptoms
I don’t think any health system anywhere in the world is perfect. It seems that connecting with the right doctor is a more common issue no matter where one lives, based on experiences shared on this forum. I am grateful that when an MRI is needed, for example, it is always done in less than a week and follow up with neurology is within days. My insurance is nothing special, it is a basic plan. It seems that many here, like Mazha, had to shop around for a specialist until they connected with the right one, usually a specialist in MS, that can address a patient’s particular needs for medication, physical therapy, etc.
I'm so sorry you're having such a horrible time, Mazha! I don't like to hear that the Mayo Clinic didn't want to treat you. You may not have active lesions, but why wait until you do? Also, it sounds like your arms are still functioning and you didn't mention any difficulty with swallowing and speaking, so it's important to protect those functions.
I hope your doctor can put you on something highly effective, perhaps Ocrevus, Kesimpta, Lemtrada, or Mavenclad (I am not a doctor) . I do know some doctors prescribe drugs off label.
You should also know about HSCT, a stem cell transplant. I have heard conflicting information about whether it's approved in the US. I believe it has only been done in the US as part of a clinical trial. They are available in Mexico.
Thanks! This gives me lots of options to explore. It wasn't that Mayo didn't want to treat - they just said Ocrevus only stops new lesions and they didn't think I'll have new ones. The stem cells are intriguing....
it is completely false that you need active lesions to be prescribed treatment. You need a neurologist who is familiar with DMTs for MS - what you’ve been told is ridiculous and they are withholding treatment from you. Push back and we will support you!
I feel so empowered with all you've told me! And full of hope that there might be some treatments anand slowing of my symptoms. Today was a bad day and you are all so positive. I think I might let my witchy side out a little more 😆
I have experienced so much the same. MS ADVOCATING finds specialists in your area. Your records ,like mine is gaslighting as you go from one to next. Keep all records and inactive does not mean DON’T TREAT. UPDATE MRI AND COMPARE W/ SPECIALISTS. Keep a record of symptoms starting and visits. You are not alone. I research disability law in your state, elder law and find local resources and insurance policies. Don’t give up! God has a plan if you believe. I do. Sorry if I offend anyone.
I agree 100% with all you've said. Thank you for the encouragement. I will give this new doctor a chance and hope she comes up with a plan. Otherwise...I might need to come up with a plan myself
Hang in there! I was diagnosed with PPMS in October 2023. I had earlier MRIs (brain and spine) that showed lesions and had mobility and cognitive issues for many years previous. (my wife told me 6 years ago that she thought I had ms) I had a lumbar puncture that showed positive for ms and my neurologist refered me to U of Mich hosp neuro-ms specialists that diagnosed PPMS. They immediately recommended ocrevus because they said it was the only FDA approved treatment for PPMS (many others for other ms variations). I've had two courses of ocrevus since then.
MRIs last December showed no worsening of lesions, but so far there has been no mention of stopping ocrevus.
One suggestion I would make is to check with your insurance company about how they would cover ocrevus in the event it is prescribed. It's expensive and if you may go that direction it may be helpful to have an idea what the insurance coverage may be.
As I followed the people in this group I found their support to be very helpful and thoughtful. But, I also learned there is a very wide spectrum of Drs. responses and recommended protocols.
May I ask which Neuro you see at UM Hospital? My neuro there left a while back and I saw a new Neuro once named Salvador Sierra San Nicolas. I think he is working under a different neuro. So far, I've only seen him once so I'm not sure how good he is with MS patients.
I saw Jessica Ann Piche MD. I only saw her the one time. My regular neurologist is in Jackson. I don't have enough experience with Dr. Piche to make a recommendation, but my experience was fine.
Sorry you have had such a hard time getting a diagnosis. The whole idea for taking MS meds is to keep new lesions from forming. Waiting until you have a new active one is not the norm. I would try to find a Neuro that specializes in MS as a lot of neurons don't really know how to treat MS effectively. Good luck to you.
”2017 Revised McDonald Criteria”! If your Neuro gives you a blank look then get another Neuro! Likewise, search it on the web so you know. Your clinical history sounds like you won’t need it BUT did you have a lumbar puncture? Was it positive for Oligodendrocyte Bands? As your own advocate, learn from the web what that is. PIRA… learn it, progression independent of requiring activity. The GOAL of DMT is to stop further lesions and keep those from getting worse. If your in your first trimester will the pill work then? Will a condom UN pregnant you?
My Neuro secretly hates me…. “If you had MS would you do it? “ It being an unapproved med or procedure!
Check out the “Leaky Pool” theory. On YouTube check out MS Focus, Anything from Drs Ben Fowler and Aaron Boster.
My third Neuro diagnosed me. The first two were idiots. If I had the knowledge beforehand I would probably still be walking unassisted now.
Stand your ground and demand treatment with the knowledge you posses. The 2017 Revised McDonald Criteria is your silver bullet! Use it!
Mazha has already said in her original post that a diagnosis of MS has been given to her, and her problem is actually with getting treated with a DMT. How is knowing about and understanding the McDonald criteria going to help with that problem?
Also, around 10% to 15% of people who are confirmed to have MS and have had an LP have a negative result from that LP, so as she's already been given the diagnosis there's no need for an LP - unless the third neuro decides to get one done.
I listened to my first two Neuros diagnoses without the knowledge to ask direct questions. I have SPMS. Over a decade I had RMS without treatment. Now I’m on a DMT to, hopefully, stop further activity. My point was the more knowledgeable on MS you are then the better advocate you are. I’d stick it to my Neuro if she said I was positive MS but not going to be treated. If the Neuro won’t… find a new one!
Hello friend, I’m really saddened by the answer you are receiving; “no medication needed because your lesions are inactive????? I inject 3 times per week with Copaxone and my lesions are “I guess according this doctor inactive too!!! The logic is to PREVENT a flare, that’s why our regime is called Disease Modifying Treatment. I haven’t flared in almost three years now. If you are willing to try a treatment regime, your doctor should explore the best treatment options. You might a health advocate from your insurance team to strategize a plan with health providers and advocate for you. Praying for the best, keep me updated and stay encouraged! NeeC
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at the end, he said I didn't have anything, though I had progressed to walking with a cane and suffering brain fog, loss of words and headaches. A visit to Mayo brought a diagnosis of PPSS, but no real treatment options. I now have a local neurologist who is relooking at everything again, while my symptoms have moved into both legs and I now get horrible vertigo regularly. I am told that no MS treatments will help since my lesions are inactive. I get meds for symptom control, PT and acupuncture.
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