I read your blog and although you are in the USA with all your problems and us in the UK with practically the same but different circumstances. I am 63 years old, male and retired from the forces after 25 years in 1988. I started getting problems around 1998.
For 5 years I had been seeing various specialists trying to find out what was wrong with me until my GP informed me I had MS but he could not treat me until my Neurologist gave a formal diagnoses. This went on for a further 14 MRI, 6 spinal taps etc over a year until in sheer rage I pinned my Neuro to the wall and told him to make a dx or he would not walk out of his office. End of our relationship...but a dx of PPMS
My Gp who also specialised in MS was absolutely brilliant, I never needed to make an appointment as I just emailed him and he would make it for me. He would sit and chat for almost an hour on each visit and if things got bad he was at my house within 20 minutes of requesting him. Then he retired, (this was 3 years ago) and nothing has gone well since.
In order to get a Dr's appointment the whole practice (as many as 30,000 people) have to ring up at 8am, consequently by 8.05 all appointments filled (although you may not find this out until around 9am when you can finally get through). I have never seen the same doctor twice, I have no idea who my personal GP is, and none of whom know any of my history. None of them have any idea what MS is all about nor do they read my history when there, because they do not have time.
I have complained to my MP who tells me they are going through a change and give it time to settle down... that was a year ago.
My 2nd Neuro was very good but then went away for a year doing a trial of some sort and on his return told me there was nothing further he could do for me and was signing me off his books.
So basically here I am, No Neurologist to turn to, no known GP to pour my heart out too, my family havent a clue what is happening to me despite whatever I download and print off for them to read, and I feel I am now spiralling down into depression (again)
So apart from eating every pill known to man, (including the blue ones in Smarties) I am rapidly reaching the point of no return to turn the tap off for the final time. I could probably stagger on a few more years of only seeing cures or new technologies BUT only for RRMS but really what is the point. I read thousands of comments on Facebook or the MS site who all seem to have Neurologists experimenting on them with various drugs to little or no effect. The vast majority of them have little faith in the poor assistance given to us on either side of the pond. I wish you all the best for 2012 hun but the yanks are better at getting results then us. a) there are so few of us and b) trying to coordinate them to shout loud enough is a waste of breath... BYE
I rallied from my "sick" bed to read your answer and I am sorry for the issues you have faced. Quickly, can you tell me where in the UK you live? With your permission, I'd like to find the closest MS Center near you so perhaps you could find another neurologist affiliated with it. There are MS Centers worldwide offering a top quality of care to MS patients. Hopefully there is one near you. Please let me know.
Firstly may I say I was a bit down when making my last comment 
but having PPMS is hugely different from RRMS (without belittling your symptoms) in that once diagnosed their is very little if anything that a Neuro can do. There are no drugs we can take and nothing in the pipeline for us. We tend to be the forgotten part of MS as you may note from the numerous RRMS posts with various problems and variety of drug taking.
The few PPMS tend to post infrequently (At least, "I stress", that is my opinion) I often sit here chatting on facebook and posting blogs but its nearly always persons with RRMS who respond..... So any PPMS'ers who read this get onto the MS facebook sites and tell me off or chat whichever you prefer.
Alison P,
Thank you for your response. You will remain in my prayers, with the hope that somehow we can let our MS doctors know that we demand they sit up and listen to us - we deserve the best treatment possible from them. When I left my last neuro, I sent a note stating how unhappy I was with how he "treated" me and how I would hope that he would listen to what I was saying and treat his other patients with the respect and dignity they deserve. I will never know whether my note reached him, but it sure made me feel better that I "stood" up and said my peace.
Keep me posted how you are, Alison.
Best,
Cathy
Cathy,
I am spoiled with my neuro's office. When I call and talk to someone with the patient support line, I can leave a message for my nurse practitioner or the MS nurse (coordinator for the 1200 MS patients this office services). I will get a call back with a response to whatever my concern/request is within the hour.
If I am having a relapse and know that I need steroids, I can call and will be offered an appointment the next morning or even later in the same day. I forget how long it took to get my very first appointment in this practice as a new (undiagnosed) patient. No more than a month.
It is the nurse practitioner who is carrying the bulk of the 1200 patient load I believe. My neurologist is speeding toward retirement age and I've heard mentions that he takes lots of vacation time (leaving the NP and MS nurse to run the show). Even still, I can get quick attention.
However, we do not email. Communication is done through phone calls and messages. The MS nurse will give out her direct extension number, however I lost it and continue to call the main patient line.
I'm glad to hear that you've refound your previous neurologist and hope that your relationship is equally as responsive.
Please heal quickly from this relapse!
Lisa
Merely Me,
Baby steps forward, eh? Weak, numb and fatigued head to toe - the steroids definitely did NOT work! But I will stay strong - and try to figure out how I should handle this next - I won't do any more oral steroids; that's for sure.
I am sorry you are experiencing a flareup and hope you find your way to wellness soon and without much incident.
Thank you Amy, too, for pinch hitting for me for a few days while I was feeling so low. I appreciate your friendship and kindnesses - they will not be forgotten.
Angela, thank you for your answer to my QofA and for asking about how I was doing. It's so lovely to have so many friends in our MS community. You are all the best! I wish we lived near each other so we could meet for a cup of coffee!
Thanks again.
Angela,
You are such a sweetheart to keep on top of me! Thank you for that.
I don't see my doctor until next week, so I am toughing it out right now. I am making a list, in the meantime, of all of my "issues". The top one is "why did the steroids make my MS worse?" Ugh.
I know what you mean about the steroids not being kind to us! Really a terrible treatment. Sometimes I feel like a guinea pig.
I hope you feel well and, again, thank you so much for keeping on top of me.
Cheers,
Cathy
Hiyah Cathy!
I am glad you found my response over on my old post about taking prednisone.
I am so sorry you had such a horrible time with your doctor. I hear you. I actually have a good neurologist but the hospital system I have really stinks. Their "phone tree" and receptionists are the worse I have dealt with...not what you want to deal with when you are neurologically challenged due to a relapse. Went in the other day and had back to back appointments...my son is having seizures so we both saw our neuros that day. But when it came time for me to check out the receptionist was so rude...she practically threw a clipboard at me and yelled, "DO YOU UNDERSTAND?" It was a form for getting an MRI. I felt like saying...I have MS but I am not deaf. I ended up writing a letter to the hospital adminstration because this type of treatment is not new. I actually got a response.
Sometimes a letter to the appropriate folk can help. But it is rare to have time to do this.
Yep...taking prednisone once again...just a wee bit. It is helping but I fear the aftermath.
I am very glad to hear that you have a good doc now...that is so important.
Hope you feel better soon. Bad doctors...ugh. Your story makes me sad. We deserve better. Let us know what happens okay?
Hey All,
My doctor decided I am going to "wait it out" with this exacerbation, hoping my RRMS and 15 years on Copaxone will be in my favor. If not, in 3 months I will call her and go on IV steroids to see if that helps. In the meantime, my exacerbation continues and I am tired, numb, weak and SAD over this. But, let's see what happens. This gray, rainy day matching my mood. Should've bought myself some flowers today! Hugs to you all, Cathy
Wow
Three months is a long time to wait. I am so sorry you are going through this.
I had a short time on the Prednisone this time...three on one day...two the next and one on the last day. I found that I had some breakthrough times afterwards but things seem to be better for now.
Is there any other treatment they can give to you during this time? Are there any medications to help with individual symptoms?
Please know I am thinking of you and hoping things improve.
Hugs to you too.
MM
MM,
You are a sweetheart. I don't know, though, what meds they can give to me for (1) extreme numbness and (2) more fatigue than usual. Any fatigue meds they gave me in the past (many years ago) never worked. Three months IS a long time. If I feel I need to call her sooner I certainly will not hesitate.
Glad to hear the short-term meds helped you. Great!!!
Hugs,
Cathy
Hey again
What about Provigil or Nuvigil? I never thought I would take Provigil but by golly it works for me...this is for the fatigue. There are also some supplements that may help fatigue but these would need to be checked out with your doctor.
Also some antidepressants may have an energy boosting effect for some people...Wellbutrin comes to mind.
What about Neurontin for numbness...if it is the pins and needles kind?
I am sure you know way more about all this than I do. I just hate to see you suffer like this.
Feel better soon!
MM
Hmmm... kinda brings to mind how they "treated" MS back in the 80's. Wait it out was a common suggestion. Three months will feel like six if you get no relief. Are you having any pain?
I do tend to admire any of us that can be patient and let the disease run it's course, as steroids are so harsh and only "fast forward" the attack. You're still going to have the attack, just quicker. Patience is hard to garner when you're suffering though.
I just relocated to my winter residence and will meet yet another neurologist tomorrow. Mayo was adamant that I have someone on board they can communitcate with. Another opinion never hurts, right?
Hang in there, Cathy. Post when you're up to it.
Angela
My problem is that every time I have difficult issues with my hips or legs my neurologist sends me for physical therapy. I've always been an exerciser, am in touch with my body and know all of the therapy moves by heart, including the use of heat and cold. He insists on sending me to his therapists (at a $75 co-payment each visit I might add) and I get the feeling he doesn't know what else to do or else he is using me to support the local theraputic community. It makes me crazy to think that this is the only means of diagnosis. He never suggests means other than x-ray. Wouldn't a sonogram show if there was something that wasn't MS? I don't know, I guess I'm just a little frustrated that therapy is his only weapon.
Sheila,
Perhaps it's time you sough out a different doctor. It sounds like you are quite unhappy with this one (with good reason) and you need to ask for recommendations for someone who is more "in sync" with you - someone who will listen to all of your issues and concerns and work with you other than throwing therapy at you.
If you need help locating a doctor in your area please let me know!
Best,
Cathy
Sheila,
Yes, yes, yes! Pushy means you are advocating for yourself and your health - and that, in turn, is also advocating for those who love you. I learned, after having MS for 25 years, that you MUST speak up. If we don't, who will? It's not my way to be bold and speak up - but with our health, we have to! (Hope this helps.....) -:)
only finding out that I have MS around a year ago. I've tried the MS DOCTOR.
Not being happy with the Doctor. My last attack. I just went through the ER route,
unbelievably I found a Doctor who wanted to take on my MS, only to find out his group boss was not willing to take on my case.
Anyway I was treated through the 5 day IV treatment. Not knowing that when you come back home it still takes so far weeks to recover. yes still waiting to recover
because i'm on medicaid they only provide certain doctors and the doctors that i have seen have not helped me at all. i was diagnosed with m.s. and osteoperosis back in 07 but in 08i lost my by sister neice and momma and never thought about what the dr said again . i just thought i was depressed and depression usually causes a cover up of natural pain andpain that is from diseases, in 2009 i started seeing another dr who did a mri then a cat scan then put me through a burage of test and came to the conclusion that i have m.s. and asked for my records from m.o. he asked why i didnt tell hm that i had m.s. i told him that i didnt remember and if he had been through what i had he would have forgotten everything else too. now we r tryin to find a place that can help but i live in the panhandle of tx and they want us to go 45miles to 4 hours away to see a specialists i cant afford it and i cant do that drive.
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Why is it that our MS doctors seem to be SO busy?? I, too, have felt the horrific panic set in as I await a return phone call. It seems it takes longer whenever it's my neurologist, or maybe it's my being scared that makes it seem like forever. Imagine my surprise when after seeing a new neurologist at the esteemed Mayo Clinic, I got a return call within an hour of my message, FROM THE DR HERSELF!!! Now that's service!! I have since shared my Mayo experience with my local Dr's and they've all seemed a bit more willing to please. I get so tired of voicemail prompts and messages left on systems I can't follow up with. Mayo Clinic sets the bar on this issue, as they have actual people answering the phones, taking messages, and returning calls. I had to call my local neurologist this morning and guess what? His nurse answered and I got a return call this evening. Lets hope some change for the better has ensued!!
And Cathy~ I hope you're doing OK!
Hi Angela~
Cathy is feeling too crummy to respond today- so I'm jumping in on her behalf. I'm always amazed to hear it when MS doctors aren't available, or don't have a system in place to manage these important issues that need immediate attention. I mean c'mon... they are treating people with MS. They should know that this is an ongoing need. So much stress can be avoided if they do- and we all know the ironic reality that stress makes everything worse.
My doctor works for a big practice and when I call they squeeze me in between appointments to be seen as soon as possible. I also communicate with him via email and cc the nurse practitioner so if he isn't available to respond, she will take the lead. I find email to be much less stressful than phone trees and re-articulating what's going on. If for some reason I haven't heard back from them in a reasonable time slot –5 minutes! ;)– I can in for immediate attention. This part of the relationship is critical and without it, a deal-breaker because if you can't rely on this simple thing... who knows what else would not meet the mark.
I'm glad you and Cathy were strong enough to move elsewhere. I believe that many suffer in silence- not knowing about their rites as a patient. I hope this is the beginning of a beautiful friendship for both of you.
Thanks for your response.
Amy
Angela,
Sounds like Mayo has their system working well. And very interesting that your local doctor's office is stepping up their responsiveness.
Lisa
Lisa~
Not only are my Dr's responding better in light of my Mayo experience, they are willing to abide by the Mayo Dr's suggestions! My last IP steroid visit was at my local hospital with my local neurologist, but with my Mayo neurologist calling the shots!! I feel so fortunate to have the best of both worlds!
Angela
Angela,
You are so blessed to have visited The Mayo Clinic, and I am thrilled this blessing is continuing with your treatments/doctors at home.
Yes, I am blessed Cathy! However, the reason behind my Mayo referral was a living nightmare. While hospitalised for solumedrol for an MS attack I went into "complete CNS autonomic failure". Every system that encompasses the autonomic system just crashed. I was IP for over a month with everyone pulling their hair out. Heart rate, BP, bowel, bladder, .... OFF! Mayo took me into their neuro dept that far exceeded my wildest expectations, and they have a team that deals with this "rare, even at Mayo" condition. I now live by my watch and pharmeceuticals. 26 pills a day are what keep me going, and that's just for the autonomic failure. Add my MS meds and I lose count!!
I have now made a return trip and continue to be in awe. Truly the finest, flawless system of patient care I've experienced. I wish every medical clinic could follow them as their example.
~Angela
Angela,
I am so sorry for what you had to endure before getting to the Mayo! What a shame to have to go through all of that! The light at the end of that tunnel was the Mayo (which Mayo was it; where was it located?) You certainly deserved the top quality treatment after what you went through! Thank you for sharing.
I was seen at the original Mayo Clinic in Rochester, MN. My 1st visit was in December 2010 during the snow storm that collapsed the Viking's stadium roof. I have never seen so much snow! My 2nd was this past Oct and it was gorgeous.
I met an administrator from Mayo who spoke as to "why" Mayo MN is so far above the other's. It draws on mid-western people for their HUGE support staff. These are longtime hardworking farming people, who know how to work and are proud of it. You just don't get that kind of attitude in a big city. Rochester, MN is a tiny cornfield town, with the Mayo Clinic smack dab in it's center. I found that idea interesting :)