Had appt today with Primary Care Dr. He was a little upset that my Neuro did not start me with MS treatments considering my LP results (high protein and banding). With my brain leisions, abnormal LP, eye sight problems, the type of pain issues that I have, and ruling the mimickers out, he said that Primary Progressive MS was the culprit. He referred me to a new Neuro to start with treatments. Hopefully I will get some relief from my pain soon. At least I do feel a little better knowing what is wrong with me. God Bless to all.
I am so sorry to hear of your diagnosis Jennifer, but pleased you at last have a diagnosis. I'm sure it won't be too long before you have some relief from your pain and can starting getting to grips with what this diagnosis will mean for you.
Hi Jennifer, sorry you've joined our club! Was it your primary care doc that diagnosed MS? What makes him/her think it's primary progressive? This flavor of MS occurs in only about 10% of people diagnosed with MS.
My history is so extensive with this issue. Yes, he is the one to make the diagnosis. My pain is constant with lapses (every other day or so) of more severe issues. If something is going to happen to me, it happens all the way. There is no mild cases of anything with me. I had to get a Blood Patch from my LP because of the severe headache I still had a week later. Could not sit up for more than 5 min. Neurotin? makes me sleepy on 100mg. Seriously;)
It looks like quite a few of us think we need more information before we can fully understand your situation. I'll add this one. Did the LP results show bands were present in your blood sample as well as your spinal fluid? A blood sample should have been drawn at the same time as the LP.
As for the other questions - a PCP is often the first to suspect MS but it would be unusual for a GP to diagnose it or order disease modifiers to treat it. That is left to a neuro, ideally (but not necessarily) a neuro specializing in MS.
Even the neuros are reluctant to diagnose PPMS initially unless there is a very strong and documented history indicating it couldn't be the more common relapsing-remitting type. Most will follow you at least a year before they are willing to commit to PPMS. It takes that long to evaluate and besides - PPMS has much fewer disease modifying treatment options. Docs don't like to place people in a category where options are limited unless they are very, very sure of the diagnosis.
I'm sorry you've received a MS diagnosis at all but really saddened you don't have a doctor with more interest in relieving your pain. I'm not sure what "MS treatments" your PCP is referring to but the disease modifiers themselves target future relapse - not existing symptoms. Symptoms are treated the same way they are in people with other disorders and diseases, usually some combination of medications, physical therapy and assistive devices. The PCP will even sometimes manage that aspect of care or a pain management specialist could be consulted for difficult pain control issues.
Welcome to the forum. I hope you'll be willing to clarify your situation. At any rate you certainly do need to start looking for a doc who can be more tuned in to your immediate needs. No doctor should leave you suffering longer than necessary, imo. That makes about as much sense as waiting to lower a dangerously high blood pressure until someone can confirm the specific cause of it being so high. Hogwash.
According to PCP, whom I have been seeing for a year and a half, and is an internal specialist, everything leads him to this conclusion. PCP is not treating with any modifiers or anything else. He is sending me to a new Neuro (with whom he has already spoken to) to confirm diagnosis and see if we can find some way to help me with my pain and discomfort. I do understand the issue with Neuro's diagnosing PPMS. However, I have had these ongoing and progressing issues for 2yrs now, 1 of which has been with this Neuro. We have tried PT, pain meds, and neurontin. Nothing seems to be helping.
Have you ever tried a course of regular dosing with a drug like zanaflex or baclofen? The nature of the back pain you describe reminds me of the pain of spasticity.
I get it in various parts of my back, neck and shoulders. It took months of treatment with a combo of baclofen, therapeutic massage (from a neuro-muscular therapy specialist) and programmed stretching exercises to release it enough that I could walk around with any degree of comfort. Now it requires constant maintenance stretching along with balanced doses of baclofen and gabapentin.
I hear your frustration and hope I didn't offend you earlier. I'm not trying to dismiss your problems - not even if spasticity seems too 'simple' for a cause and stretching seems too 'simple' for a solution. I assure you there is nothing simple (or easy) about either. Spasms are PAINFUL and it is VERY difficult to even start to get them stretched out when all they want to do in response is snap into a tighter spasm yet.
You might also be interested in looking into a consult with a specialist called a physiatrist (NOT psychiatrist). They are experts in physical medicine and often understand how to coax bodies into a more functional - and comfortable - state. Again, something you can do to address pain relief without waiting for a diagnosis. That's my objective in making suggestions.
BTW, I found your LP results posted and made a few comments when I saw that no one else had commented.
I too have PPMS, questioned by my PCP after an MRI for a history of falls, memory issues and fibromyalgia, then confirmed by my neurologist an MS specialist after an LP. I would be interested in knowing what they put you on for medication as there is no medication out there for PPMS, just meds to treat the symptoms. I was diagnosed within 6 mos of my MRI 41/2 years ago. I am on meds for symptoms but not a DMD as my neurologist informed me there is nothing out there targeted for PPMS and why inject yourself if there is no advantages. I am VERY comfortable with my neurologists recommendations. She is well know in her field, has done many studies and is affiliated with one of Boston's top hospitals. Please keep me posted with your progress.
~Live as if all your dreams came true~
We have only been trying medications for the pain. This is all before the PPMS diagnosis. PCP cannot put this diagnosis on paper of course, the neuro has to do that. I know there are no meds (unfortunately). Like I said, we were waiting for test results and trying different pain relievers. None of which worked of course (Neurontin, Ibuprofin, Naproxin Sodium, Advil, and other prescription strength meds).
Thank you for the concern. I will keep up with the postings. May God bless you and always be with you.
There is now a school of thought (can't remember where I read it) that they are considering Tysabri for some of the previously thought untreatable forms of MS. Will try and remember where I saw it and get back to you.
found it! about.com had it listed on one of the MS pages as follows:
ovantrone (mitoxantrone) and Tysabri (natalizumab) are both used in similar circumstances to treat multiple sclerosis – for people with worsening relapsing-remitting multiple sclerosis (RRMS) or progressive-relapsing multiple sclerosis (PRMS). Novantrone is indicated for secondary-progressive multiple sclerosis (SPMS), and Tysabri may help out in cases of SPMS where active lesions still show up on MRIs, as well.
I take both Lyrica & Celebrex and they seem to help. They were originally prescribed for fibromyalgia but I get the feeling from my neuro that she feels it's all MS related. Just something you might consider asking for and see if it helps you!
~Live as if all your dreams came true~
I am sorry for all your trouble and diagnosis. What a struggle. My PCP was the first to find my MS, It took two more years and six Neurologist to be officially diagnosed with MS then a year later they diagnosed PPMS. I hope you get some relief.
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