Problems with Cognitive answers but Nuero says SFN

[Scott1]

Hi,

I think you have a lot to learn. Start here if you wish - http://www.thisisms.com/forum/regimens- ... 24019.html .

Regards,

[rluck9974]

They should just rename this forum. Thisismyagenda.

I will stick with the doctor's advice for now as I don't even know if I have MS. Maybe you should take that into consideration before you start recommending advice to random people that really only applies to your current situation. Recommending testing for sexually transmitted diseases is also inappropriate given that you do not know my history, ie that I have been with my wife for over 10 years. I don't know why people on this forum tend to think that they have all the answers for everyone even though they don't bother to ask what an individual lifestyle is before saying it's lack of vitamins or bacteria that's causing it.

Also, I do think that my Neurologist didn't just ignore the answer, that's why the are sending for a consult who can test memory and cognitive functions as well as physical abilities on a broader scope. I did talk my doctor after the visit and asked her if I should be worried about it and she relayed to me that because of my job, which happens to be a Financial Advisor and the fact that I run my own financial planning business, my stress level and these problems could cause me to be a little nervous and forget easy answers at appointments. Whether that's the case or not, it's not my job to tell her how to do hers and I really have no evidence that my memory is an issue other than that one time, and my job requires calculation and memory skills. I believe this a better plan than just saying you have this based on what we see and giving me a bunch of meds that could cause me to have different symptoms. I do however feel that my symptoms are not small fiber neuropathy and more related to MS or some other autoimmune disorder. I am well aware that being diagnosed with MS takes a long time, sometimes years even with a MRI of the brain so for me to sit here and worry about it all day and then read pages and pages of someone's opinion on what worked for them even though I haven't been diagnosed makes no sense at all. Good luck with your plan but it's not something I am looking into at this point.

[Scott1]

Similarly, you should look at your own agenda before shooting your mouth off. You are clearly considerably out of your depth.

I was a financial advisor but operated at a considerably more sophisticated position than your level. If you were any good at your job you would be looking for anomalies and inconsistencies and clearly that is beyond your capabilities. You would be transferring that ability to your own health problems. Instead you waste our time with your vulgar attitude and ignorant tantrums.
It is beyond me why you came here. Did you just want someone to feel sorry for you?

If your problems continue you are welcome to come back but leave your gutter mind, arrogance and ignorance behind.

[rluck9974]

I am out of my depth just because I want to follow my doctor's advice? lol . My job also has nothing to do with this and you have no idea what my business is, how I run it and how I prepare for my clients. That's an ignorant response. I have also never been vulgar to anyone or had an ignorant tantrums. Whatever that is supposed be?

Pretty clear I don't have an agenda and I am looking for anyone that has similar symptoms that has actual information that might be useful or what tests were involved with their diagnosis. Think I have said plenty of times that I am not sure if I have MS and I am only looking for information. That's the point of this forum, not to be inundated with personal agenda information that you may have sexual diseases and to get tested for vitamin deficiencies when you have no basis for those requests. . Are you a doctor? Do you have factual information that all of the things you did actually helped your MS? Why is it necessary to ram that information down everyone's throat every time a new person comes to the forum. I have had just about every blood test you can imagine, something I already mentioned previously. You and lyndacarol are all over this forum saying the same thing to everyone who is a newbie like me, totally ignoring anyone's symptoms or information they already shared, but basing your weird information that may or may not be true on your own personal experiences. It's totally incorrect and ignorant.


Congrats for getting your MS under control and for maybe getting a personality in the future. Btw, I can be on this forum and you don't have the power to tell me not too. I am not here to cause problems but you definitely have a problem with anyone who doesn't like your posts for unknown reasons. Grow up.

[Scott1]

If you want to follow your doctors advice then do so. You don't need to come here.

Most people are here because their doctors advice has let them down.

Deficiencies in vitamins, amino acids are often indicative of deeper metabolic problems and infection. Your doctor knows this but won't test for them immediately. LyndaCarol refers to Vitamin D because there is mass of medical literature that point at it. Similarly there are masses of literature looking at the knock on effects of infection. Again your doctor may not look.
You worry about MS but fail to recognise it is a disease of unknown origin. Some of your symptoms are familiar but would be very early stage if it is MS. You need to eliminate obvious problems that may not be MS.

You clearly dont know what a massage is. You clearly don't know a great deal about what different medical providers do. You clearly haven't bothered to look up what the suggestions I made reference to and have jumped to a grubby conclusion.

If you have MS you will need many suggestions from here otherwise you are wasting the time of the people who are interested.

Please respect the people who make suggestions. We don't always agree with each other but their lives are probably more difficult than yours.

[NHE]

You want me to get tested for a sexually transmitted disease after I go to a massage parlor. Lol.

There are many people discussing using antibiotics against Cpn to treat their MS. I'm not promoting it, just saying that it's not uncommon.

http://www.thisisms.com/forum/antibiotics-f28/

[Scott1]

Cpn is transmitted like many other airborne pathogens and is often implicated in MS , at least as a coinfection - http://www.davidwheldon.co.uk/ms-treatment1.html

Here's a simple summary - http://www.mc.vanderbilt.edu:8080/repor ... tml?ID=779

Chlamydia trachomatis is a different bacteria in the genus (there are four) and is spread sexually.

Mycoplasma Pn can infect the CNS but leave no evidence of demylination - http://www.medscape.com/viewarticle/410864_6

Antibiotics don't always work in either case so a broader array of treatment is often needed for a protracted period.

[rluck9974]

If you want to follow your doctors advice then do so. You don't need to come here.

Most people are here because their doctors advice has let them down.

Deficiencies in vitamins, amino acids are often indicative of deeper metabolic problems and infection. Your doctor knows this but won't test for them immediately. LyndaCarol refers to Vitamin D because there is mass of medical literature that point at it. Similarly there are masses of literature looking at the knock on effects of infection. Again your doctor may not look.
You worry about MS but fail to recognise it is a disease of unknown origin. Some of your symptoms are familiar but would be very early stage if it is MS. You need to eliminate obvious problems that may not be MS.

You clearly dont know what a massage is. You clearly don't know a great deal about what different medical providers do. You clearly haven't bothered to look up what the suggestions I made reference to and have jumped to a grubby conclusion.

If you have MS you will need many suggestions from here otherwise you are wasting the time of the people who are interested.

Please respect the people who make suggestions. We don't always agree with each other but their lives are probably more difficult than yours.

You obviously do not know how to comprehend when you read. I do not want your advice. I didn't ask for your advice specifically and I certainly do not want to listen to anything you have to say after you insult me like a teenager who can't get his way. The only person that is wasting their time on this is you as you completely ignored that I do not want your advice but you went ahead and copied and pasted from your very important post forcing me to read it. I already stated earlier that I am not going to go that route. Btw, how am I wasting your time on the internet? No one if forcing you to comment on anything. I don't care if you post or not.

ONCE AGAIN, I AM GOING TO FOLLOW MY DOCTOR'S ADVICE FOR NOW and if I want to post and read comments here, that's my choice, not yours. If I feel the need to, then maybe I will come back to your novel and read up. For now, get a life and stop bothering people just looking for basic advice and people with similar symptoms. Most of all, stop trying to lump everyone in the same categories. Internet doctors are the last thing you should believe on the internet. It's not my job to figure out what's go on with me especially this early on. Just because the information is available on the internet, it doesn't make it prudent to follow it especially if that information is given to every single person who joins a forum. Write a freaking book if you think you have all the answers.

You're like a solar salesman at Home Depot. You just keep going on and on until someone says leave me alone even though they trying to be nice about it by letting the guy talk. This isn't my life, stop trying to make it like yours because you obviously don't have one. If someone doesn't want your advice then don't take offense to it, move on and worry about yourself. Do everyone around you a favor and seek professional help to talk about your problems because it's clear you have many. Good luck with your MS and continued internet teaching.

[NHE]

rluck9974 and Scott1, perhaps it's best to agree to disagree and let it go.

Just a friendly reminder: We love the debating that's been going on lately because it forces people to think critically and challenge their own beliefs.

However, there can be too much of a good thing. If you disagree with someone, please succintly state why and let it go at that. Point, counterpoint, counter-counter point, etc. is not useful-- the reality is that after the first disagreement, you will rarely convince another of something they feel strongly about unless you have shocking new information to share. The drawn-out debates also turn people off from reading the messages in the first place. If you really have to get something off your chest, please send that person a Private Message-- there is no need to have a long argument in public.

For the most part, everything on the board so far is just fine, but I want to keep it that way. We are all in this fight together; Let's focus all of our energies on trying to beat MS into submission, not each other.

[jimmylegs]

seconding NHE.

hi rich and welcome to the forum. sorry to read that you are frustrated with it so far.

i have some questions, if i may. i am interested in more detail about how the torn ligament occurred, your exercise regimen, and your stress cycles at work and elsewhere (my brother is a financial advisor with his own business and he definitely has patterns of sx which correspond to tax season basically - plus two young ones at home).

when i was diagnosed i too considered myself very healthy and was working 7 days a week, mon-fri finishing up an extended co-op work placement, and working a physically demanding job on saturdays and sundays.

i can relate to your frustration with cognitive issues. at my worst, i could not remember what show i was watching when the ads were on. if working with colour codes, there was no way i could remember all 9 digits for r b and g values from one screen to another. at my very very worst, i had visual info processing issues as well which gave me so much difficulty driving that my neuro almost revoked my driver's license. the only reason he didn't was that i had recovered from it by the time i got to my appointment. it's so nice to have it together again. i got so much better when i really started working on things, that issues i had previously thought were a normal part of life cleared up. like getting off topic in a conversation and not remembering what we were supposed to be talking about. now i know that if i happen to lose track of things in a conversation (which is extremely rare these days), that i should not have that problem and probably need to get my act together.

i can also relate to your feelings about your doc's instructions. i too felt strongly that my doc knew best at the outset of this process (10 yrs ago). i assembled a team which included my neuro, the local ms clinic, the hospital's drug info centre, my GP, a compounding pharmacist, a naturopathic doctor, a physiotherapist, a dietitian, and a counselor. at first the neuro's word was law. he was going to save my life. i was right on board with picking my pharmaceutical treatment. i did grow disillusioned with my various health care professionals over time, but i completely get that people's experiences with health care vary. i personally read like a fiend from the very first and was fortunate to have full text access to all the medical journals available through my university's library. quite early, i decided against the drug therapy and 10 years later i am doing fine. at this point i am rarely in a doctor's office. this next bit is putting a decade of experience into a sentence, but there's only so many times you can hear a medical professional tell you 'you'd need a decade of med school to understand the answer' when you ask questions, only so many times you can let your docs know they've ordered the wrong test for the wrong metabolite, have to correct the pharmacist's math so they don't kill you with a ten times higher dosage than you need, be required to write your own requisition because the doc doesn't know how to order that test, have a lab not comprehend the requisition and/or mishandle samples, hear the dietitian say 'that question is over my head', hear your doctor say 'i can't answer that question - at this point you are more of an ms specialist than i am', the list goes on. as i said these are experiences accrued over a decade and from many parts of the world so it's not like i live in some crazy backwater of incompetents. and even with all of that said, i'm not anti-doctor. and i have been dramatically helped by one specific pharmacist i encountered by chance. in general however, i just know that for me, for any acute issues the doc is the go-to, and for chronic, that is more my own responsibility. re acute injury, yes when i tore my mcl and blew my acl at work in 2013 i was quite pleased to get in line to see the surgeon who did such a good job reconstructing my knee. for the chronic stuff i have only stayed with my plain old local GP who orders the tests i request. i've recovered enough at this point however, to be overconfident at times. i've developed bad habits in terms of monitoring my status. i have a lab requisition sitting on my desk here that is a year old. that's because i've built myself up enough that i don't feel things go out of whack after one day of not being vigilant. i had always thought, about my case specifically, that even though the most noticeable issues and symptoms showed up quite a short time before my dx, that i had been digging the hole i was in for over a decade and could expect to take at least that to get out again. the good news is that it can be done. yes there's some permanent damage and some limitations, but i feel good every day. in my case i did have to be open to looking at things a bit outside the box, and i needed that mindset of pursuing optimal health vs pursuing a diagnosis.

so with all that said, i'll look forward to your reply re your injury, your work and your exercise regimen. there is valuable and relevant information in the medical literature for all three topics.

[oddity]

Hi Rich,
I read some of the responses here. I have thought the same thing many times as you about all the people on here recommending vitamins and books. While I think some of them are sincere it does make you wonder if some of them don't have allterior motives. Some of these recommendations have sent me down some dark rabbit holes.
Let me know how the physiatrist goes. I went to a chiropractor for a while and had deep tissue massage but neither really helped.
You mentioned that small fiber neuropathy can go away. Did your neurologist tell you that? A neurologist I saw a few weeks ago in Laguna Hills told me it doesn't go away. I think she is wrong because I have read that if you find out the cause and treat the cause SFN can be reversed.
You also mention your Neuro has you on Lyrica. Do you find it is helping? You mention you are only on 50mg. That seems low. The Neuro in Laguna wants me to switch to Lyrica from gabapentin. She prescribed me to work up to 270mg a day which seemed high to me.
Hope you are feeling better. I have good days and bad days. I'm slowly coming to terms that my activity level may never go back to the way it was.

[jimmylegs]

i started reading a bit about SFN and found this open access study:
The clinical approach to small fibre neuropathy and painful channelopathy
http://pn.bmj.com/content/14/6/368.short
table 1 includes a list of possible causes
http://pn.bmj.com/content/14/6/368/T1.expansion.html
The Aetiology, epidemiology and pathogenesis section is quite fascinating. lots of potential targets for action in there.

[jimmylegs]

quick FYI related to the discussion above re d3 levels and sun exposure

Low Vitamin D Status despite Abundant Sun Exposure
http://press.endocrine.org/doi/abs/10.1210/jc.2006-2250
"These data suggest that variable responsiveness to UVB radiation is evident among individuals, causing some to have low vitamin D status despite abundant sun exposure."

i can point you at other studies documenting one apparent reason for this variability in cutaneous d3 synthesis, if you are interested.

[rluck9974]

Hi Rich,
I read some of the responses here. I have thought the same thing many times as you about all the people on here recommending vitamins and books. While I think some of them are sincere it does make you wonder if some of them don't have allterior motives. Some of these recommendations have sent me down some dark rabbit holes.
Let me know how the physiatrist goes. I went to a chiropractor for a while and had deep tissue massage but neither really helped.
You mentioned that small fiber neuropathy can go away. Did your neurologist tell you that? A neurologist I saw a few weeks ago in Laguna Hills told me it doesn't go away. I think she is wrong because I have read that if you find out the cause and treat the cause SFN can be reversed.
You also mention your Neuro has you on Lyrica. Do you find it is helping? You mention you are only on 50mg. That seems low. The Neuro in Laguna wants me to switch to Lyrica from gabapentin. She prescribed me to work up to 270mg a day which seemed high to me.
Hope you are feeling better. I have good days and bad days. I'm slowly coming to terms that my activity level may never go back to the way it was.

Hey Oddity,

My Neuro told me that since 50% of cases of SFN are idiopathic and that it could go away on it's own just the same you got it without any explanation for it. Whether that's true or not, I would tend to believe her as she is one of the top Nueromuscular doctors in the US. I would suggest trying to get a referral to UCI if you feel like your doctors aren't doing much and you aren't feeling any better. They do seem to care and are looking for answers rather than just saying SFN is what you have, now deal with it and here is some more meds. Her name is Dr. Goyal at UCI Nueromuscular Center. It's literally impossible to get through so you would probably need a referral if you don't have a PPO as they don't really seem to want to return phone calls unless you have a referral. http://www.ucirvinehealth.org/find-a-do ... ita-goyal/

As far as feeling better, not so much. My numbness and cramping is pretty bad and now I have on stiffness in my legs and hands. That's the reason for the consult to the physiatrist, I guess to see if it's more than just muscular and then hopefully they will do a MRI of my brain. They decided last week that I should see another doctor because it's been close to a month with no improvement. The part that bothers me the most is the cool tingling and numbness I have in my legs when I wake up. It's really bizarre and this all started when I woke up one time in the middle of night and my legs were tingling and numb from the waist down and I had to get up and move around for it to go away. Almost the same as when you sleep on your arm or something and then you can't move it. It was hard to move for a bit like my legs wouldn't work. Very scary stuff. That's the part where I think it's more than just small fiber. Have you ever had something like that with your SFN?

They prescribed Lyrica at 25MG twice a day but recently they raised it to 100MG a day. Still a low dose and I could use a higher dose because it's really not doing much but I think their plan is to raise it slowly so I don't have too many side effects. Fortunately I have extra so I take a few more here and there which seems to help. They also raised the Bacoflen to 30mg a day which was 10MG a day. That's supposed to help with the spasticity in my legs. Lyrica is similar to Gabapentin but stronger in terms of it's side effects. Gives a buzzed feeling for an hour or so even after taking it for a few weeks so you could imagine what a higher dose could do if you're not used to it. My activity level has decreased dramatically but I still force myself to go to the gym at least twice a week but you do what you can do at this point. That pretty much goes for everyone here in terms of activity levels. Going to be awhile before I find out what's wrong with me because I am not accepting the Small Fiber as the diagnosis.

[oddity]

That's good news to hear that Dr. Goyal is stating SFN can be reversed or just go away. If things start to deteriorate for me I may make an appointment with UCI. My problem is I live in Las Vegas. I lived in Orange County my whole life then a few years ago I decided to move to Henderson, NV. I think the heat has played a part in my illness. I have family in the OC that's how I am able to see this neurologist in Laguna Hills, but it's not fun commuting for Drs appointments. It used to be fun commuting to catch some waves, but that has all changed.

As far as numbness and cramping, I do not get that. When this all started over a year ago for me I would get strange weakness in my legs which caused me to have an awkward gait. This is not a problem for me anymore. For some reason the weakness went away or I have just compensated for it. I also never really had numbness. I did and still do have a lot of tingling and twitching in my legs, mostly lower legs. The calf issues drive me crazy. I also have strange tingling bilaterally in my upper back/ shoulder region along with a burning/itchy pain in my legs. The worst for me is a strange pain in my left shin area. It feels like someone is constantly pinching me there. This comes and goes and is more pronounced if I go for a jog or do some simple exercises with my legs. After I take my neurontin these symptoms seem to abate. The worst part is the Neurontin seems to wear off around 5am at which time I wake up with these pains that then cause a restless leg affect. It makes it very hard to go back to sleep. I am fearful of what would happen if I stopped taking neurontin all together. If I switch to Lyrica I will have to stop Neurontin first and that scares the sh-- out of me. I appreciate the heads up you have given me regarding Lyrica.

Another strange issue I am having is skin changes on my lower legs. The skin on my calves has become wrinkled and just odd appearing. Do you have any skin changes? I think this may be from lack of activity and my legs aren’t sweating like they used to. The MS specialist I saw says this is part of SFN.

You should push for an MRI. I would recommend one of your brain and spine. Don't do it in an open MRI either. Those machines are weak. I speak from experience after having three brain mris over the past year. The second one I had done was at an imaging center in Garden Grove in an "open" pancake type machine. That machine hardly showed any brain lesions. It was a total waste of time and money. Try to find a 3T machine that is "Wide Bore" if you are claustrophobic. If you're not claustrophobic then just go into an enclosed 1.7T. That should be adequate especially at a center like UCI.

This has been a long journey for me with my symptoms morphing from basic leg weakness and muscle pain to, what seems to be, a full fledged neuropathic condition. Almost like an alien form has taken control of my body and everything I enjoyed doing a little over a year ago has been taken away from me. I will continue to fight on until I get this figured out. It sounds like you have the same spirit as me.