How to get help when no one wants to help

[sowhatifidid2]

Hey, my name is Jimmie Lee. I am a mom of 3 that started having cognitive function loss about a year ago. I was in college about to graduate when I went from being an A student for 2 years to being barely able to pass a test. I felt like I was losing my mind. I would get upset because I couldn't think and then I would have these emotional outbursts. All these things were sharp decline. I went to a neurologist who told me this was not MS. I got a second opinion and my next doctor listened to me. I have always been clumsy but more so at the time. He did all the testing. Brain Scan-2 small spots. C-spine-2 small spots. Negative spinal tap but it did show I was immuno-suppressed.

He put me on Copaxone and it changed my life. I still have lots of issues but I don't have the cognitive dysfunction as often or as long lasting as before. We moved from metro Detroit to Bowling Green KY. I went to a neuro here and basically was told I don't have MS. The successfullness of the Copaxone was due to the placebo effect. I absolutely fell apart. I have been told all my life that the extreme fatigue was all in my head. My falling was me not paying attention. Now the cognitive issues, not being able to figure out how to get out of the bath tub for instance, was all in my head.

I have done some reading about what my good neuro in Michigan talked to me about. He suspected that I had lesions in the grey matter of my brain, cortical lesions. They are hard to see with the technology out there. All my symptoms make sense with that. But the neuro here follows a MS checklist. Spinal tap- negative; brain scan-he says is negative ...the small spots were reflection. So he wouldn't even look at the c-spine mri, because it is wildly "misleading". How do I find a doctor who won't dismiss me again? I have had 2 so far and I honestly am just a mess. Does anyone have any suggestions?? I am feeling tremendously hopeless. I am afraid the cognitive decline is going to progress quickly and I am going to be a vegetable before anyone acknowledges my symptoms as being real.

[KitOP]

Hi, I feel bad that you are going through all of this. MS can be so frustrating all on it's own, let alone mix in what you are experiencing.

If you call the National MS Society - 1-800-fightms, they can give you a list of MS specialists in your area.

There are many good doctors out there, sometimes it can take awhile to find that right one, like you had in MI.

Good luck, and hang in there. You will find a very supportive group of people here to listen and who genuinely care.

[sharonjerome]

When no one helps you

It is my belief but not superstition, When I found myself helpless and could not find anyone to help me, I just talked to God and convey my problems with a period of time I used to find my way.

[sowhatifidid2]

MS frustration

Thank y'all. I appreciate you guidance. I have been looking to God for answers & I know I will get through this somehow but as I said before, when I get scared, my cognitive function declines and I get sooooo emotional realizing my cognitive function is just a small degree now but will get progressively worse. To top it off, reading studies regarding cortical lesions, OMG! Patients being turned away & eventually passing away. Autopsy results show cognitive lesions that have caused so much degeneration that it was fatal. These were people like me who begged doctors and were turned away. Neuropsychiatric MS is another term for this kind of behavior and degeneration.

I will contact the national Ms society. If I could, can I ask y'all to pray for me?

[Tia1]

Praying for you and for wisdom for your doctors. Remember that you are not alone.

[JerryD]

I hear you, loud and clear. Rest assured that I will include you in my prayers. Good luck

[excrna07]

cognitive hit is almost as distressing as the physical sx

over past 2 years, lot of stressors: 7 lumbar surgeries from muscle spasticity in lower back, aging parents, etc.

the meds (including opiods and benzo/s) obviously are causing some of these issues.

often feel like I'm in a fog. reading instructions or reading highly technical information sometimes flummoxes me.

talked to friend that is a neuropsychologist. she pointed out a lot of that might well b stress related. started doing my 'work' - journaling, mediation, and the like. all geared to actually encourage all the fear, anger, pain to come up so I can dump it.

am a christian, but had stopped doing daily prayers/ meditation.

am finding that a lot of the fog clears. yes, there are cognitive hits, but not nearly as bad. and yes will pray for you. we all have to remember we're not alone.

it's hard to reach out to others. but we mser's have to stick to gather and help sac other, too

[eunicebediako]

Lonely..........

Hi Everyone!!!!! My name is Eunice Bediako, I have been newly diagnosed with Primary Progressive MS. And I have somewhat of a support group like my family members but at times. They whether frustrate me or cause me stress and depressed episodes due to their own personal stresses and issues going on in their life which is under stable due to the fact that I lost my dad recently. but I at times its even more frustrating for me, cause I also lost my dad on top of a new health condition. HOW DO I DEAL WITH ALL THIS WITHOUT GOING CRAZY....... PLEASE HELP!!!!!!.

P.S: I'm also a Christian but its very very very very very hard to deal with a lot of pressure from family and your own health condition........

LONELY GIRL.......

[MSsurvivor22]

There is Hope

Hello SowhatifIdidto,
What a great name! Not only do you have my prayers but you have my understanding also. It is so unfortunate, that here it is 2014 , when there is extensive M.S. research results being published and close to a dozen meds to choose from (that can really help a newly diagnosed pt. begin positive treatment) , that some neurologists are stuck in the same old box, going over the same old laundry check list of symptoms, to identifying a positive M.S. diagnosis. All this does is creating the same old doubts both in doctor and in patients and many times it forms into a mutual mistrust. I know this because I have seen four neurologists and more than one was very insulting to me, in a scornful condescending manner. So I know first-hand how it feels to be dismissed, challenged about my symptoms that were "different" and ultimately not believed. It is a horrible feeling.


At this point in time I don’t feel it has to do with the practitioner’s age, rather I believe it has to do with a willingness to really stay up to date on the progress both in testing and in treating M.S. Nobody denies that this is a difficult condition to diagnose, however, you must keep your hope alive that you will get help. I’ve been on Copaxone for 11 years now, with symptoms that go back many years before that, yet, it is always my faith that gets me through the rough patches. Maybe too, many Neurologists are not in touch with the fact of just how large the percentage is of pt's whom do not fall neatly into the black & white pattern and how many more linger in the grey area, with hard to trace lesions. Maybe too, doctors are unaware of the issue you brought up, that the demyelinated lesions in the cerebral cortex and cortical atrophy have recently (like about 4 years ago 2010) been recognized as important components of multiple sclerosis pathology. Although there is obviously much work to be done in this area, we must be patient.


I am so sorry that because you had to move away from the Neurologist who was treating you successfully with Copaxone, you were left with the option to find a new doctor. The next doctor from what you said seems abrupt and not at all what I would call thorough. Having to stop your treatment in such a sudden way must have been very unexpected for you and it does strike me as being very unfair. One thing in your favor is having use of the internet to do a search for other doctors in your area. For instance, there are a couple of web sites that rate doctors and have patient reviews listed I just found something called;
RateMDs.com
Best Rated Doctors near Bowling Green, Kentucky
Best Rated Neurologists near Bowling Green, KY
1. Dr. jianhua zhu - Bowling Green
2. Dr. dennis m. o'keefe - Bowling Green
3. Dr. walter r. warren - Bowling Green
I think you’ll have success if you combine this web site with the sage advice given to you above by: KitOP Chat Administration Volunteer Coordinator MSWorld, Inc , there is a good chance you’ll get somewhere good.

“Hi, I feel bad that you are going through all of this. MS can be so frustrating all on its own, let alone mix in what you are experiencing. If you call the National MS Society - 1-800-fightms, they can give you a list of MS specialists in your area.

There are many good doctors out there, sometimes it can take awhile to find that right one, like you had in MI.

Good luck, and hang in there. You will find a very supportive group of people here to listen and who genuinely care.”



In my case it was actually my PCP (Primary Care Physician) who suggested that I consult with a colleague of his, Dr.P. even though I had to travel an hour to see him. Since I live in the state of New York, where there are probably a hundred thousand doctors practicing in all areas of medicine, this


at first struck me as ironic, however, it changed my life making that first appointment. What was different about this Dr. P. was he really listened; he did not keep glanced at the test results I had brought with me from the other doctors. He asked questions, about tests, symptoms, and medical history before he even examined me.


Jimmie Lee, you sound like a common sense person and I applaud your efforts to further your education. You mentioned that the Michigan Dr. was a good listener and this seems like the first step to get the help you need by finding somebody who will really listen to you. I realize that many doctors like to see the results of their own tests, so more than likely you will have to undergo more testing. Remember they have to do the rule outs for the other diseases with similar sympt. Also you have to accept the fact that in your first appointments with a new doctor they may not be believers or knowledgeable about the grey matter lesions or cortical components of the M.S. pathology. Cognitive lapses, by the way, mean different things to different people, so perhaps without sounding as if you are diagnosing yourself (you know doctors hate that! Lol!) write down what you consider these issues to be. It may help if you present yourself to be self-confident, willing to be part of a team, to show him/her your willingness to be open and honest with them Calmly explain that while you lived in Mich. an excellent Neurologist, diagnosed you with M.S. and he conducted your previous treatment with Copaxone, which greatly help you.


Sometimes too it helps to take someone with you to the initial visit, like a spouse or relative. Preferably this person would know you well enough to collaborate your story (I mean your symptoms past and present) and add anything that you may be forgetting or their own observations on cognitive issues. You know, it is quite common to get anxious during the first visit and to want to pin-point the exact things to say to help "convince" the new doctor, of your diagnosis ,however, what I learned is that he/she should be asking the right questions of you to help you. Additionally, keep in mind that whether your main symptoms are cognitive or physical it is the very nature of M.S., those dang symptoms that keep coming and going or keep rotating or changing altogether. This is why patients with M.S. cannot be plugged into a one-size-fits-all category.
One more piece of advice (if I dare), is to say that keeping in mind that only you live in your body 24/7 and no matter how graphic and precise you are no doctor can feel them as you do, will help. What you do have, Jimmie in your favor is The Truth. The truth is on your side and continuing to believe that every day will help you seek is out there. You have your three children, you have you faith, and I will pray for you. Good luck, dear.

[sowhatifidid2]

Funny you mention top docs

MSSurvivor, it is funny you list the top neurologists in Bowling Green. Dr. Zhu is the top doc & he is the one that is being so dense....what does that say for the "less" recommended?

He claims to be a specialist in MS in all the referral services but has told me he is not an expert in MS. That every case he ever treated was textbook. He said if I have MS then he has to go back to medical school. Now knowing he is the "top expert" in the area is very disheartening.

[Cat Mom]

You are definitely in my prayers, as all of you are.

Copaxone changed my life too, it's been almost 7 years. I would FREAK if another doc took me off it.

We can't change docs in Ontario but it seems to be ok in the US. I would get another if you can, especially since you feel different being off C.

Good luck, please keep us posted.

Jen

[RockysMom]

Placebo NOT

Hi Jimmie lee, I'm so sorry to read your troubles! I was struck by you being told copaxone worked only due to the placebo effect. That means you weren't really getting copaxone. Did this jerk neuro tell you that? You should get a copy of your records from the MI neuro and see if it said you were really taking copaxone or not. I bet you were and that jerk neuro is just trying to hoodwink you. If you were taking copaxone and it helped you, then who cares if you have MS or not, it worked! Maybe your neuro in MI can help you find a new neuro where you are.

Plus get a copy of any letters the MI neuro wrote to your PCP back in MI and it will contain his rationale so you'll know it and can discuss things more clearly. You sound like you need a patient advocate to help you deal with all this. You sound like you do have MS or maybe you have some other demyelinating condition but copaxone would work for either one.

Patients always seem to forget that they are also consumers and you deserve better service. Take a deep breath and you'll find a good neuro, you just need to interview them first, but having your records from MI is going to be your best defense. Good luck.