Another Newbie in Terrible Pain
 

Hello everyone...my name is Sonya and in 2005 I was diagnosed with Multiple Sclerosis and Arnold Chiari Malformation. After searching for answers to the symptoms I had been having, I found a great Neuro and he did more testing and found that I have Sjogren's Syndrome. He questions the MS now, and thinks that I have CNS Sjogren's Syndrome. To me, I guess it doesn't matter what I have...all that matters is that I'm in tremendous pain, and it's only getting worse.

I saw my doctor on Wednesday and he suggested I start on Cell Cept and LDN because I'm on disability and Medicaid won't cover much in the form of more expensive drugs. I have been on Copaxone for the past year for MS.

What brought me to see him and to this forum is the terrible pain I'm starting to have in my legs and feet. I thought maybe I was going through an MS flare up and needed steroids. I have MS type lesions on my brain and spinal cord and last year via MRI it was determined that I was suffering from an active flare up of MS. Needless to say, last year I certainly wasn't in as much pain as I am in now.

Over the past few weeks I've experienced bladder issues (I just can't eliminate), and my legs and feet burn so badly one minute, then are ice cold the next...or they are tingling and numb, or just in terrible pain. My balance is being affected now, and I fall alot. Sometimes touching my legs even hurts! Whats up with that??

I don't know what to do...where to turn. Can anyone direct me where to start in my search for health and wellness? Supplements? Medications? Therapies? Diet? Ahhh...I'm in constant fear that I will lose my legs one day if I don't take drastic measures now to turn things around. Or is it too late?

Please, anyone with any suggestions, I'll listen and take all the advice I can get...I'm a single mom, alone and scared to death and need to be able to take care of my son. I cry alot and try not to let him see, but he see's me stumble and worries.

Sorry for this long post here....I'm just so desperate and in need of advice from someone who knows where I'm at.

Thank you so much!
Sonya

Welcome to NeuroTalk:

Sounds frightful. Over the years reading forums like this,
I've seen some patients with "MS like" diagnoses that had
gluten intolerance/Celiac. Also very low B12 can be overlooked and lead to terrible deterioration of the nervous system.
Often gluten intolerance is attached to B12 issues, because of the malabsorption of nutrients.

So I'd get tested for B12 ASAP if you haven't recently done so.
Do not accept "normal" from your doctor, as US has old outdated lab ranges for B12 still. If you are below 400 you need to fix that right away. This is the most common, obvious problem and a place to start.

You might want to view the video by Dr. Wahl...who has MS and found dietary adjustments were very helpful:
http://neurotalk.psychcentral.com/post844321-42.html

Look back over the past years if you can, and see if you can find a trigger...or event that started all this. With PN, history can be revealing and point to a possible life style intervention. But with MS, a trigger is less likely to be found.

Look for vaccines, trauma, infections, food poisoning, exposure to pesticides, chemical exposures to solvents and dry cleaning chemicals, family history for possible genetic triggers, drugs like fluoroquinolones or flagyl or statins, etc.

mrsD,

Thank you so much for taking the time to read my lengthy post. It's hard to not be so lengthy when there is so much to consider.

When trying to find a trigger, as you stated, that is hard. I have had at least 13-15 surgeries over the course of my 49 years...and with one of those, a simple DNC, there was a cotton pad left inside of me. I've also had a terribly painful ectopic pregnancy where I nearly lost my life. The first thing that started all my surgeries was an infected appendectomy. That year alone I had the apendectomy and the ectopic pregnancy two months apart. On a side note, after recently finding my biological father, he told me he too was diagnosed with Sjogren's Syndrome a few years back, which is so odd considering the amount of men vs women that have it.

I've put in a request to see my regular pcp. I will request a B12 test. Any other tests you can recommend while I'm there?

I've been reading here since I've found this site only a few hours ago. So much helpful information, and it seems like tons of very caring people too. For the first time these past two weeks I feel some hope.

Thank you so much again. :)

Yes, get a Vit D level also. Get that result as well, since treatment by doctors often involves D2 Rx which doesn't work.

So during those infections, do you recall what antibiotics you used? Cipro, Levaquin, etc cause nerve damage in some people, and this is thought to be irreversible. Dr. Jay Cohen on his website offers some supplement suggestions, but they may not work well. Using fluoroquinolones with prednisone or NSAIDs is thought to accelerate damage.
http://neurotalk.psychcentral.com/post661103-2.html

Metronidazole (Flagyl) also causes nerve damage, as well as Zyvox.

Damage from drugs, may involve mitochondria, and when this happens there are only a few things to try. But this type of thing is why finding the triggers can help.

Wow...so much to learn here! Thank you for sharing your knowledge! I will request the Vit D test as well.
I know I've been on a host of antibiotics....the list probably a mile long...not to mention that I was diagnosed in the early days with Mitral Valve Prolapse. Every dental appt was always prefaced with anti-biotics.

You've given me many good places to start, and many of the words you used I don't even understand. I'm going to start to look them up and figure out what all of them mean.

Thank you so much mrsD....maybe I'll be able to sleep now. :)

Sonya

Suzabelle,

Welcome,

I don't know if your doctor explained that Sjogren's can be Primary or Secondary. Primary is when it stands alone with no other autoimmune disease present. Secondary is when another autoimmune disease...like MS, RA, Lupus, etc...are present. It however, does NOT mean that the severity of the sjogren's is any less in a secondary form or more severe in a primary form. Just that there are/are not other AI disease involvement. So it is very possible to have both MS and Sjogren's. If they have seen and confirmed MS lesions, and you have positively tested for Sjogren's then both diseases processes are likely the case for you...Sjogren's being secondary.

As for the pain, Sjogren's can have CNS manifestations like you describe. The bladder issue might be an autonomic issues (if it's difficult to initiate the flow and empty the bladder). Autonomic dysfunction can also cause balance problems. Do you have any problems with your BP and heart rate?

Have they started you on Plaquenil? It comes in a generic, so should be allowed with Medicaid. It is the first line DMARD to use with autoimmune disease to help ease joint pain, help with fatigue and slow progression.

I too have Sjogren's with severe neurological complications, so if you have any questions, feel free to ask.

It sounds like you have many possible triggers with all the surgeries alone. MrsD provided you a great starting point for getting B12 levels, Vit D checked, and a look at some dietary changes that might helps ease your symptoms.

en bloc,

I'm sorry you have severe neurologic manifestations with your Sjogren's....it's so tough to figure out, at least for me. The only thing I don't understand is that I have those lesions...several on my brain in various area's, cervical spine, as well as lumbar spine. I'm lost on that....do Sjogren's patients get lesions like this?

My doctor is now questioning the MS because of a negative LP when I started this medical journey in 2005. He's the head of Neurology in a University Hospital and says that 95% of MS people have positive LP's when I questioned him on that lol. I get so confused....ack!

I don't understand your questions regarding heart rate and BP?? I used to have horribly high BP, but now it's normal....at the last appointment it was 120/70, pretty good compared to my numbers three years ago. And I'm not sure what Autonomic means, so I'm going to look that one up too. :winky:

I do have a good 50lbs to lose, which now I believe it of utmost importance to follow through with. And I did find the Dr Wahls (sp ?) you tube video's, so I'm excted to hear what she says about dietary changes.

Thank you so much for your encouragement.....regarding the Plaquenil....I have vision in only one eye and since I've been in an active state of illness progression he was concerned because he doesn't want to risk anything happening to my 'good' eye, and I believe Plaquenil has some risks to eye sight?? (Correct me if I'm wrong)

Anything else you have to add is greatly appreciated... Thank you so, so much!

SuzaBelle:):):)

Another newbie in terrible pain
 

hi Suzabelle,

These illnesses are difficult to diagnose. When my Sjogren's symptoms started, it took ten years to get a diagnose of primary Sjogren's syndrome. I had a lip biopsy, which they said was conclusive with Sjogren's.

Also have peripheral neuropathy, which not all Sjogren's patients have. My pain in my feet is pretty much every day, standing on hard floors will give me a lot of pain.

No one else in my family has this, but autoimmune illnesses can run in a family.

If you want more information on Sjogren's try: sjogrens.org

I have not heard of those lesions or plaques being present in Sjogren's, but that doesn't mean it doesn't occur. The scleroses (lesions) are what give MS it's name. That would be an excellent question for your neuro...as to what other things can cause those lesions. The fact that your LP is negative is perplexing.

The autonomic nervous system controls involuntary functions like heart rate, BP, digestion, urination, perspiration, etc. That's why I asked about your heart rate and BP and if you had any problems with it...since you mentioned the urination and balance problems. It seems your BP and heart rate are fine.

The side effect of Plaquenil causing damage to the eyes, is extremely rare, but with your history I understand withholding it.

I'm curious what means of testing did they determine you have Sjogren's? Was your SSA or SSB positive or did you have a lip biopsy? Also, have they done a skin biopsy to check for small fiber neuropathy? What about EMG or nerve conduction studies?

Are they doing anything for your pain...like gabapentin (generic of neurontin), lyrica, or something else? It sounds like you're in considerable pain yet I saw no mention of pain mgmt.

The pain just from touching the skin on your legs is called allodynia. I recently began having a form of this myself that causes pain with a simple brush/touch on my legs.

I know it's a lot of reading, but at the top of this board are many 'stickies' that are very helpful about supplements that can, in some cases, help to relieve pain and other symptoms. There is also a search function on the tool bar that can pull up threads on most anything based upon the word you're looking for...like allodynia, MS, autonomic dysfunction, etc.

If there was one thing I would suggest, it would be ask your doctor about starting two meds at once (cellcept and LDN). If you have negative side-effects, you won't know which is to blame. Same goes for positive effects...won't know which helped. The same goes for even supplements...starting one thing at a time until you know how your body will respond.

what was said about your chiari ? Do you need surgery for it ? sometimes MS is mistaken for the chiari . There is a thread on here for chiari malformation.... One important thing is to get a chiari specialist . Not all NS are chiari specialist. Roz

Hello Sonya
 

Welcome to Neuro Talk. You will find lots of support here. I am so sorry for the pain that brought you to this site. However there are people who have these conditions, and they will help you to try and find another direction for help. I agree that PCP would be a good place to start. You have to invest the effort to find the physicians that can help. You mentioned you had a good Neruo. A pain specialist is also a source of help for the pain. Keep in touch here, and there will be more people to answer with suggestions. To be a mom, and have to deal with all that you are going through has to be difficult. I was not happy to hear that medicaid would not cover some of the medications you need. Your doctor can write a letter of appeal with medicaid, and that sometimes works. Don't let them tell you no, when it is your quality of life at stake. I too have medicaid, and have had to fight to get certain medications. Several appeals for one particular med. Your doctor and you writing the appeal letter can work. I hope that all of us here, can be supportive of you while you go for more help. I will keep you in my thoughts and prayers. Mrs.D is extremely knowledgeable about places to start with medicine and nutrition. I do wish you all the best. I am here to listen any time. ginnie

There have been some reports--
 

--in people with Sjogren's syndrome, of central nervous system involvement, and apparent "plaquing" on MRI images:

http://neuromuscular.wustl.edu/antib...n.html#sjogren

http://www.sjogrensworld.org/mandel.htm

http://www.medscape.com/medline/abstract/15609267

http://www.ncbi.nlm.nih.gov/pmc/arti...v063p00616.pdf

Thank you to everyone!

I'm in awe really of all the information and support you are giving me. Truly such a blessing, I believe!

The diagnosis of SS was after a lip biopsy...and the doctor that read my lip biopsy was one of the 'toughest doctors' at the University of Chicago to give a positive diagnosis for Sjogren's....at least that's what my Neuro told me. He said my Sjogren's diagnosis, in his mind, is 100%, not to mention the other terrible symptoms of constipation, dry mouth, and dry eyes that I've had for years.

The lesions are indeed what confuses me, and with all that we were doing when I saw my doctor, I am really surprised I didn't ask him what else could cause the lesions. Usually I'm very good at grilling my doctor on everything. Must have been the pain issue's and the begining of my bladder stuff that scared me so much.

Okay, so to understand what to do here, I guess I need to start one med at a time. Should it be the LDN since that seems to help pain? My Dr said the Cell Cept will take two months just to kick in. Ugh. Never ending it seems.

Also, I did see an excellent doctor on my Chiari, and he said NO to surgery for it....until I get the other symptoms I'm having under control. It's funny, well sort of anyway....I had seen two other surgeon's for the Chiari and both wanted to operate immediatly. I'd rather go with someone that is conservative in that area because once you have that painful surgery, there is no going back. :mad:

What do you all think of dietary changes? Do those make a big difference?

Thank you so much for any more information....you are all so wonderful. :)

Before starting a major dietary investigation, I'd keep a food journal for a couple of weeks. See if you find correlations between what you eat and how you feel. Some reactions are delayed next day or so...keep that in mind.

It may give you a direction to take.

One thing you must eliminate is MSG in all its forms, if possible.
This chemical is called an excitotoxin and inflames nerve receptors for pain.

mrsD,

Thank you for the heads up on MSG. So, are you saying I should eliminate all forms, even in canned foods and boxed foods? I'm wondering if MSG has any connection to the pain I'm feeling currently....I mean, when I think about it, I eat alot of chicken that has been marinated in those McCormick season packets. I have never paid attention to the ingrediants in those at all but you can bet I'm going to check into that now. I'm assuming that Sea Salt falls into the same category as table salt. I will have to look that one up.

I really don't mean to complain, however, it does look like all my habits have brought me to this place, and now need to be changed. Saving myself from all of this is worth it, that's for sure, yet I'm such a wimp. Ugh. :winky:

Sonya

MSG stimulates the NMDA pain receptors in the body.

It is insidious and hard to tolerate for some people.

Here is a video by Dr. Blaylock MD about it.
http://neurotalk.psychcentral.com/thread166327.html

http://en.wikipedia.org/wiki/Excitotoxicity

Almost all processed foods contain MSG or a variant of it.

And I agree it is difficult to avoid...but you may feel much better if you do.