Hi, I read your post with concern, both for you and for your experiences with the neuro and neuro psych community. From my experience on both sides of the exam table it is well worth "doctor-shopping" until you find one with whom you can converse and be heard. I am now seeing the 9th neuro I have consulted since my first symptoms in 1999. The first several wrote me off as a "Munchhausen Syndrome". That is certainly demoralizing for someone in the medical field. No.'s 8 and 9 quickly made the diagnosis and have treated me appropriately. So I understand a lot of your problems with the professionals you have met.
I am baffled by your persistent use of the word" pathologizing" And have no idea what it means with regard to your symptoms. You reject outright some very good suggestions for some of the pathologies seen with MS such as the cognitive dysfunction, fatigue, and anger/depression.
First, how sure are you that depression is not playing a role? I realized that you feel the neuropysch testers seemed determined to find a reason other than MS for your symptoms. However, as you may know, depression is very frequently a "primary" effect of MS as it is a gray matter disease as well as a white matter one. MS causes depression as frequently as it causes numbness or constipation. Then there is the depression that attends the loss of our normal function, and for you and me, the grief of losing of our profession. There is also the tertiary effect on the body of having a chronic disease. The fatigue plays in here as well.
Being concerned about depression is not "pathologizing" nor does it diminish your other symptoms. It is merely a fact of life for well over half of all MS sufferers. It is not an assessment that you are a crock.
As for your fatigue, the neuro clearly messed up that one. Increased exercise is NOT what you need. In MS, where fatigue is an issue (about 80%) our available energy must be carefully husbanded. Exercising is NOT a direct panacea to regain more energy. I worry that you walk to and from work. That may well use up your daily "allotment" of energy. It might be well worth it to get a ride to work and then have that energy to use at work. For those of us that struggle with bone-crushing fatigue, saving a few steps on the morning may give us a few steps later in the day. Saving a couple mile's worth of steps may be a boon.
You also might talk to your doctor about other things that cause fatigue and cognitive decline such as metabolic imbalance (sugar, thyroid) or inefficient sleep. There is a suspected increase in Obstructive Sleep Apnea, a known increase in Restless Limb Syndrome, and a known association of poor sleep in people with paresthesias (like you have in your legs). MS is a gray matter disease and sleep disruption may be secondary to the scrambled connections in our CNS. Again, just because other things are suggested as playing a role in your symptoms, it is not pathologizing. There are also meds that have helped a lot of people with their fatigue such as Amantidine, Provigil, Nuvigil.... I was helped for a long time by Provigil. People's experience vary.
Fatigue and the cognition-mangling effect of it is what ended my career. Perhaps you are at that point. If you are there, then you are there. But, if you want to explore other things that may be robbing you of the precious little bits of energy you have. You might be surprised.
I am also puzzled why you would reject something like Aricept outright. Why would you not want to see if something can clear up that thinking? It is definitely not pathologizing for a doc to suggest that.
Finally, I agree with those who wonder why you are so adamant that this is SPMS. Each time you mention what stage you are at you speak about the appearance of the MRIs. The stage of a person's MS is assessed by their symptoms only NOT by the MRIs. If this is what your neuro is using, you definitely need a new MS specialist.
I will never understand why someone refuses DMDs - though it is your absolute right. The side effects of a DMD are variable, from nil to intolerable. If intolerable there are now 10 meds approved. The basic ones are not immune suppressants. At most they are immune modulating, but one is under no more risk of opportunistic infections than people not on them. On the other hand, the "side effects" of not treating MS in someone with your history is guaranteed deterioration. For me it was a no-brainer.
A good MS specialist may call RRMS when it is not clear why - drawing from years of experience. I was sure I had PRMS, having only had one clear relapse, but steady progression of all of my symptoms. My MS neuro called it definitely RRMS. I couldn't tolerate Avonex (depression), but have done well on three years of Tysabri - no side effects except a nice boost of energy for about three weeks after each infusion. My low JC virus titer has me statistically in the very, very low risk category for PM (less than 1 in 20,000)
The only reason I can fathom for insisting that you are untreatable is to stop everyone from pushing a DMD at you. And that is your right too. It's just that it seems you are balking at attempts to help with the other stuff, too - even granting that some of the suggestions have been totally off the wall. Maybe it is time to apply for disability, but at the same time perhaps there are things that could help you feel better.
I didn't mean for any of this to sound harsh. I just felt that you are posting for advice, support in feeling better, whether it is worth shopping for a new doc,and help in making the big decision of whether it's time to apply for disability. People have offered some good suggestions. Good luck.
Quix
HVAC, I agree...I need a different neuro. Maestro, I have not had any kind of acute attacks since I was diagnosed (most of the radiology reports state-no change, occasionally there is "trace amount of new lesions"). I do not have interest in taking any DMTs. I don't agree with the DX, is all. I don't think it fits. Once again, I will probably seek a second opinion.
My fatigue is and has been debilitating for the past year and a half and that is where the pathologizing comes into play. Neuro's response was to send me for a personality disorder test along with the cognitive testing.
From what he told me about the test results,the fatigue was chalked up to depression (which I do not have). There was more but it just angers me to get into it. So yes-pathologizing my fatigue, which leads to suggestions of getting into an exercise program. I walk a total of a mile and a half every day to get to and from my residence to work- it is not like I get no exercise. But that walking kills me and probably contributes to my fatigue. The suggestion to stay active completely ignores the reality I live - crushing fatigue. I read all day - I am an engineer, my work is highly mentally engaging ( I burn out mentally after 4 hours) - so that suggestion was beyond stupid...reading all day has done nothing to improve my cognition when it takes a dive and it probably also contributes to the fatigue. In order to keep up with the energy it takes to get through a work day (including the walking - I work on a movie lot). I hang on by the skin of my teeth until I can make it home to sleep -however, this is being re-framed as a mental condition (depression) I do not even have. I do not sleep every spare moment I have, not because I am depressed - I do so because I am exhausted and that is what I have been doing to continue working. So yes, it is pathologizing and I do not think that Aricept is the answer, but maybe a new neuro who doesn't blow off my symptoms when he can't figure out what else to do. I probably also have to consider the fact that my work is no longer sustainable and really start exploring my options for a change.
Christine
I would find a new doctor I can work with. It took me many Neurologist until the last two. The bottom line is it takes what it takes. I found this with MS and Cancer. You have to be a team with your health care providers or it is not doing anyone any good.
Then when I find a good team I let go of the past. It is hard but you have limited time with Neurologists so it is best to start fresh and leave the past care in the past.
Alex
I guess I am a bit confused as to your reasoning with regard to your diagnosis. How is having been told you have RRMS you are somehow being pathologized? Kyle is correct in telling you that having it changed could potentially eliminate you eligibility to receive DMT/DMD. If your neurologist is suggesting that you should stay active and consider DMT, is he not seeing to your best interest?
Please, do not be offended by the suggestion of Aricept. It is currently being used for the treatment of cognitive issues in MS patients.
It seems to me that if he was pegging for a diagnosis of somatization disorder, he would not have made the recommendations placed in your appointment summary notes.
Most sincerely,
Beth
My history is similar to your's. While speaking with my third neurologist, and second MS specialist, we figured out that my first relapse had been 20 years prior to my diagnosis. This was 2 1/2 years ago and MS specialist #2 proved to be a keeper :-)
My initial diagnosis was SPMS, as I'd had MS for 20 years by the time I received it. I have not had any relapses since, nor are there any new lesions. The damage that accumulated over the last 22 years is pretty much permanent now. That ain't so bad. If you were to see me on the street you'd never guess I have MS!
One difference between us is that I'm a proponent of DMT/DMD's. My first was Tysabri, as my doc thought I'd moved beyond the reach of first line therapies. After 20 infusions Tysabri stopped working. So I switched to Rituxan.
Knowing that MS is a progressive disease, I plan to do whatever possible to slow that progression as much as possible :-)
Kyle
HI Kyle. I was sent to the emergency room by an urgent care doctor in 2007 - he thought I was having a stroke - I was diagnosed with RRMS at that time.
I had had symptoms for more than 25 years by that point. I did try Copaxone 6 months later but it caused serious side effects (Macrocytic Anemia) and I stopped it. I stuck with the neuro who had diagnosed me in the hospital until I moved. I consulted with an MS specialist for the first time in 2010 when I asked for a second opinion. The thing about my DX is no one had ever asked for a history - it was an emergency, so that makes sense.
Also, there were numerous black holes and spinal cord atrophy at the time.
The attack I was having when I was diagnosed was pretty much the last.
At least nothing much along the lines of new lesion activity shows up on MRI and hasn't since that time. I have been on no DMTs for over 5 years. I don't plan on taking them.
One thing for sure is that my best interest is not served by the neuro that I have. Seeking another second opinion is probably in the future but I am skittish.
Hi Christine -
Sorry that you seem to be hitting your fair share of bumps in the MS road.
One thing was unclear to me. Have you been diagnosed with RRMS by someone other than an MS specialist? RRMS v. SPMS is pretty much just a labeling issue. It's the same disease, just at different stages. 85% of people diagnosed with RRMS will progress to SPMS.
I would not necessarily be in a hurry to change the label from RRMS to SPMS, for purely practical reasons. There are currently 10 DMD's approved for the treatment of RRMS. There are currently 0 DMD's approved for the treatment of SPMS. If SPMS is hard coded in your medical file, Insurance companies may deny treatment claims.
In your shoes I would seek consultation with an MS specialist. If you already have, I would seek a second opinion. The only way you are going to find answers is to keep looking for them, even if looking for them s*cks :-)
Kyle