Newly diagnosed

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1

Hi,

I started experiencing symptoms about 6 weeks ago. It has to made it impossible to run, and somewhat difficult to walk. The numbness and tingling is mostly in my feet, lower legs, hands, and some of my forearms. I do have pain in one hip that can get pretty severe, but that may not be related.

I went to the doctor about 7-10 days in. They took blood and my B12 was very low - 183. Several B12 shots later I've seen no improvement. And my 'instrinsic factor' is normal. So the low B12 may have been a coincidence and seems not to be the cause of the symptoms.

After a nerve conduction study I was preliminarily diagnosed with CIDP. I have a lumbar puncture on Jan 2nd which is supposed to support this. (I read online that 8 out 10 CIDP patients will show elevated protein levels....so this still may not confirm CIDP.)

It is nice to find this forum! I've been reading it for a few days. I guess for starters I have 3 questions.

Question 1

 Has anyone else had a similar B12 experience to mine? Where the instrinsic factor was normal, you had low B12, and shots made no difference? My symptoms sure to sound like CIDP but it also seems like a coincidence that I'd have such a severe defficiency as well as CIDP when I've not run across a relationship between the two.

Question 2

 Assuming my CIDP diagnosis is correct. I've read in several places that patients with the highest chance of full recovery with the least chance of relapse are younger, with a faster onset of symptoms, and as short of a time as possible between onset and treatment. But I've not seen enough information out there to see where I might fit within that. I am 39, a male, and my symptoms began ~6-6.5 weeks ago. At this rate I would expect treatment to begin by 7-8 weeks in.

I don't consider myself young. But I'm curious where my story may fall within the typical spectrum.

Question 3

 Treatment. I guess this is where I'll get a response of "everyone responds differently". But I'm curious, as an average, if you're a CIPD patient that does respond well to IVIG treatment, how quickly during or after the initial treatment do you start to see improvement? Again, as an average, does the typical "good" responder see his/her maximal recovery within the time frame of the first treatment or does it usually slowly improve with subsequent treatments. (Note: I've read enough to realize that IVIG isn't for everyone and even IVIG in combination with other treatments is a possibility - so I'm just looking for the 'happy path' response here.)

In closing
 Thank you for the community and for welcoming me in :) I'm sorry for the long babbling first post here. Obviously this is all new and a bit anxiety-provoking. So my initial thoughts are mostly selfish wondering (statistically speaking) what I may expect based on the broad strokes of my story.

Now to go drive toward the hospital...

Jobe

2

Jobe,

Ref. Q #3. I had drop foot, about the same symptoms of you and didn't start treatment until 6 weeks after I was diagnosed. I was weak in the legs and had to walk with a cane. A wheelchair was on the horizon. There was a noticeable difference of improvement after my 3rd round of infusions. In 6 months the drop foot abated. In a year I was without a cane. I kept getting better over the next year. I have been taking infusions for 2 1/2 years now and have an 80% improvement. For some reason over the last 6 months I feel symptoms returning as the rigidness or numbness in my legs has been progressing upward. I plan on seeing another CIDP specialists that my neurologist recommended. I believe the important thing for you to do is everything you can to start treatment. Don't worry about your age, I was 71 when I was diagnosed. I believe my good improvement partly was because they knew the cause of the onset - Statin drugs.

Skip

3

Welcome to the group, although I am sorry to hear you have CIDP. I was diagnosed at 64 and am now 69 and now a caregiver for my 93 year old mom. After my1st loading dose infusion I went back to normal. Then 3.5 weeks later I was in the hospital unable to walk. It takes trial and error to find the right treatment, and medications. I was getting the infusion every 2 weeks, and now every 3 weeks. I was on predisone for 9 months and that brought about almost full recovery along with the infusions and cellcept. There is a free magazine called IG Living. It is free. The last issue had a short article entitled (Biomarker found in CIDP patients who don't respond to IVIG therapy.) This magazine cover other illnesses besides CIDP, but has lots of useful information in it. You can go to there website IGLiving and sign up for free. The article I am referring to here is on the lower left of page 13. I just thank God everyday that my treatment works for me. Several others on this site are following the paleo diet and found it makes a difference. I know for me it makes a huge difference. I also try to eat organic when I can and grew some of my own food last summer. This is a disease that can change rapidly either way. You can go into remission, then relapse etc. Please keep us updated. Oh, I have the hip problem, mostly in my left hip, but sometimes both, and was told it is related to the CIDP. Of course it maybe different for you and yours could have a different cause. Good luck and keep us updated on what happens.

4

Hi Jobe,

In response to your three questions:

Q1: I have not been diagnosed with a low B12 level.

Q2: When I was diagnosed, my doctor sent me directly from his office to the hospital, for my first IVIG. He feels that prompt treatment is essential, and was not willing to waste any time. My general feeling, from reading this forum and going to conventions, is that you are generally on the young end of the spectrum of people with CIDP. However, I have met, or read about, or heard about people with CIDP as low as 2 years old. Teens and young adults are not unheard of.

Q3: I am one of the people who respond very well to IVIG. I first went in for a five-day loading dose. At the time I went in, I could barely climb a flight of stairs - could only make it by pulling myself up with a hand rail. After the first three days, my neurologist sent me to physical therapy, and one of the things they had me do was to climb a few stairs. To my great surprise, I was significantly improved after only three days. When I went home after five days, I was dramatically improved. (Unfortunately, I of course relapsed after a few months, which is why CIDP has the "C" in its name.)

Of course, everyone is different, but I hope you respond as well as I did. I would urge your doctor to get started on the IVIG as soon as you possibly can.

Hang in there, and remember that most people with CIDP make significant improvements. Don't give up, and don't stop pushing your doctor! Many doctors, including neurologists, are not familiar with CIDP, so if you get the feeling that yours is not, don't be afraid to ask to see someone with more experience.

Good luck,

Bill

5

I am 71 1/2 retired in May 2012 ..... But last April I started getting numbness in my hands and feet -- which led to dizziness and lurching as I walked, until by June I could barely walk and sometimes blanked out (when I stood up too fast). I was (and am) easily fatigued. I could not do any house chores or much of anything, and my typing was severely compromised. Initially I was mis-diagnosed in the local town of.... The emergency room doctor, caustic but extremely good, asked initially why I was there, where they normally treated gunshot wounds to the chest. But then he watched me walk and got me an appointment next day with a very good neurologist. Turned out I had CIDP (Chronic inflammatory demyelinating polyneuropathy), a rare autoimmune disease of my myelin sheaths (Guilliam Barre is more common but milder form).

I initially I took the full treatment with IVIG with no apparent effect -- By June/July I could not walk 4 feet without lurching, falling, lightheadedness etc. or more than 50 yards in my yard with sticks. Could not do any house work etc. Next my good doctor put me on solumedrol, a kind of prednizone. After a month I began getting better, could walk around house without lurching or sticks, balance better, hands less fuzzy, could do more and more chores and type better. Do not know if its the solumedrol or I am just slowly recovering on my own but there was hope. Of course the future is very uncertain but day by day or at least week by week I get better. I went to Boston in October and saw "the nation's leading expert on G-B –CIDP” who stood behind all that my local doctor in ..... had said and did. I did a lot of researching on CIDP and the treatments and have a general sense that no one really knows much about how you get or loose this disease --that IVIG works on some people, prednisol on others, some of us get better on our own (esp G-B) and some of us are just stuck with an awful disease. About 25 % each, maybe a big 25% for the stuck. I had lost 20 pounds on my bike and then another 40 with this disease. Now I am stabilized at my freshman weight of 200 lbs , and my muscles are returning.

But as of mid November I have been (finally) doing some fishing and hunting, (just before North Pole weather settled on us), walking with three poles (two walking sticks, one fishing) on rough ground and I would say that I am about half way repaired. The progress is slow but so far sure. If it continues for another three months I should be fine. On the other hand the literature indicate that plateaus and regressions are quite possible. They are probably going to halve my solumedrol so I do not get too much of this steroid, although side effects are hard to see at this time. At this time I am optimistic.

...

In December I am still improving slightly and capable of doing most basic things. I can do enough of my basic things so I can live a pretty normal, although restricted and often fatigued, life.

So basically I lost a year of hunting, fishing, hiking and biking, although I have kept busy professionally and actually published nearly a paper a month since retiring.

As of Mid December I started taking short trips up the mtn behind my house on my Mtn bike!

To Jobe: nothing one way or another with B12 or any dietary issues.... but I am older but have responded well to prednisol ...there is hope.

Carl

6

Hi Jobe,

I'm 59, live in the UK, diagnosed about 6 months or so ago now, along with C.O.P.D, Buergers disease, B12 deficiency, I.B.S., sciatica, gout, I forget what else! lol

Tried the IVIG treatment, that evening after the first session, I was being sick with dioraeha, blinding headache, light hurt my eyes, etc. my neurologist decided not to progress with it, not like I was ever going to repeat that day ever again. i had the headache from hell for 3 days.

i am currently on no specific medication that I know of for CIDP and don't see my neurologist again until jan 10th.There maybe some crossover in medication with the Buergers, not sure there.

So far I've had 6 episodes of paralysis in my legs at night in bed, with 2 of those episodes including my arms. They lasted around 30 mins each roughly, with me being half awake, so not overly scared at the time. I concentrated on trying to move my limbs and eventually I was able to. Then everything seemed to be normal and I went back to sleep. My neurologist isn't yet aware of these episodes so should make for an interesting appt.!

Both legs are pretty much numb and freezing cold all the time, to the knees and movement feels wooden/not in full control etc. My arms have also have the same thing, numbness, freezing cold hands and upper arms. It is becoming harder to walk, I'm really having to concentrate to make the lower legs work most times.

I'm fairly sure that I am not your typical CIDP sufferer, as I dont seem to really fit into any pattern that I have read about online.

7

You are babbling... but this site is a tower of Babel... no offense, but no one has ever been cured from information on this site. And,all information must be taken with a grain of salt (what ever that mean). And. there is no cure for CIDP. Stem cells are not a cure. And, because CIDP ...

http://www.greenhosp.org/upload/docs/Chronic%20inflammatory%20demye...

... is different for everybody/body. Even too assume that the information in the .pdf is correct is a mistake (if you take the time and energy to read all the way through, which most CIDPers don't).

No one here can tell you the correct "happy path", although there is a standard path through the forests of dysfunction, pain and anxiety... and the only person who knows your path is a neurologist. However, some neurologist may not have experienced with the lions, tigers and bears of the forest and may make mistakes ( the malpractice voodoo dolls of the deep dark jungle forests... I will send you pins!).

Anxiety is your biggest foe. But CIDP is one of the lesser neuro diseases. IvIG if it works, confirms the diagnoses. However, IvIg also works on many, many other autoimmune diseases, diseases.

BTW- i had B12 deficiency about the same level as yours and received 50000 international units, taken once a week. No problem, my B12 returned to normal. However, you might look into getting an IgM/MGUS evaluation. CIDP/IgG malfunction seems to also be related to B-cell function/malfunction... as mine was. And you have two other treatment options, one if you have diabetes. Although, some immune suppressant drugs work for some autoimmune diseases

Good luck. Start with a high dose of IgG, then work down to lower dose, the obverse way caused me a lot of useless rig-ga-roll and pain for over a year.

If I'd know the trials brought on by my own anxiety over this $@$@! disease, I'd have bought a cabin on a lake, stocked up on hard liquor and Viagra and then spent my worry time fishing and...

8

Thanks everyone for sharing your stories and advice. I really appreciate it.

@estaban, thanks for the PDF link. I've been reading quite a bit for the last week or two but hadn't run across this one.

Based on the personal anecdotes I've read on this forum and another, I think my symptoms are on the weaker side....at least at this point in time anyway. I can't run and my feet are cold and numb. But I can sort of stumble/jog for a few steps.

Exercise

Prior to 6 weeks ago I'm used to playing tennis nearly every day for 25 years. I can't do that at the moment obviously. But I own a tennis ball machine and that's been good. I can just turn off the oscillation and have it fire balls so I don't have to run. This is pretty good exercise just due to repetition.

I am guessing jogging is difficult (or not advised) for most while having weak legs/ankles. Would an elliptical machine be advisable? Your feet never leave the platform, so it seems safe. And an exercise bike seems even safer.

(I did a little forum searching before asking about exercising here.)

9

Hi Jobe, I also have been recently diagnosed with CIDP. I went to Unniversity of Pennsylvania and saw the head of the CIDP program. This is an official CIDP center. He said Motor weakness typically improves immediately with the first 5 day treatment. He did inform me IVIG treatments only help sensory deficits approxiamtely 50% of the time and take much longer. I have started treatment this October. My symptoms are hugely sensory but effect walking due to falls/ not knowing where my body is in space... I am definitely seeing improvement. The neurologists saw a trace of my reflex coming back at the knee. The neurologist at Penn said he does see patients who actually become better after the first treatment and it never reoccurs which is encouraging. Good luck with your progress!!!

Regarding the B12... Its interesting you say this. I went to a Dr who practices natural medicine.. He had been giving me B12 shots for a few months. I think this helped me maintain function. I was also taking a product ALA. The neurologist was surprised how bad my EMG studies were compared to my function. They were surprised I am able to walk. I wonder if this homeopathic treatment did help me...

10

I have a problem with balance, and I was leery of anything that would require me to move while standing upright, like an elliptical machine, or a treadmill. So, for years I worked on a recumbent stationary bike, for leg strength and aerobic. But, I have an unrelated back problem, and my physical therapist strongly suggested that I switch to a treadmill, because apparently that is easier on your back (who knew?).

So, I tried the treadmill. I have to hold on to the hand rails, but I have been able to use it without any problems. And I think it might be better for me, because the walking is a more natural motion, and walking is what I actually want to improve.

jobe said:

Thanks everyone for sharing your stories and advice. I really appreciate it.

@estaban, thanks for the PDF link. I've been reading quite a bit for the last week or two but hadn't run across this one.

Based on the personal anecdotes I've read on this forum and another, I think my symptoms are on the weaker side....at least at this point in time anyway. I can't run and my feet are cold and numb. But I can sort of stumble/jog for a few steps.

Exercise

Prior to 6 weeks ago I'm used to playing tennis nearly every day for 25 years. I can't do that at the moment obviously. But I own a tennis ball machine and that's been good. I can just turn off the oscillation and have it fire balls so I don't have to run. This is pretty good exercise just due to repetition.

I am guessing jogging is difficult (or not advised) for most while having weak legs/ankles. Would an elliptical machine be advisable? Your feet never leave the platform, so it seems safe. And an exercise bike seems even safer.

(I did a little forum searching before asking about exercising here.)

11

I am so thrilled to hear that you were dx so quickly. That makes so much of a difference! I, too, have CIDP. I was treated with IVIG, originally. But developed blood clots, so treatment was changed to a massive oral dose of SoluMedrol and Cellcept. My story is so long but to sum it up, I was originally paralyzed because the dx came to late. I spent a month in the hospital, then came home where my family cared for me. By the grace of God, I am walking with AFO's, now. The best advice I have for you is that this condition can surely be a new journey in your life. Your attitude and determination are very important. I was intrigued by your mentioning of B12. Mine was not low on my blood work, but I had read an article about the "stores" of B12 which can give false results if you are taking B vitamins, which I was. I will have to look for this article as it was soooo interesting. It even said that doctors received information regarding this problem, which could ultimately cause paralysis. My Neuro agrees to me getting B12 IM injections every two weeks. My husband administers them.

As far as your prognosis? It will probably be pretty good. There are several options for treatment. Your Neuro will recommend... So choose your Neuro wisely. Some people are now opting for the stem cell transplant.

I began showing slow, but steady improvement with IVIG within days.

My initial symptoms were tingling and numbness starting slowing in my toes, moving upward. I also felt like I had socks on up to my knees, and a stone in my sock, under my right foot.

My balance became horrible and I starting falling. I was dropping things, or things would fly out of my hand across the entire room. My face began tingling so terribly! That is just the beginning! If you ever want to talk more, you are welcome to call me. I will give you my number.

12

Hi, Jobe.

I am 38 and was diagnosed just after having a baby in August, about 5 months after the first symptoms showed up. I was almost put into a wheelchair but was determined to not go there. I immediately started IVIG (5 day loading dose) and had one day treatments every other week. I reacted positively to the IVIG, immediately feeling hot/cold on the bottom of my feet and getting sensation back in my hands in arms. However, I was very impatient and finally begrudgingly asked my local neurologist to give me prednisone, something I really wanted to avoid but seeing my improvement was going so slowly I was willing to do anything to not hang onto a walker for dear life. I also asked to get a referral to Johns Hopkins to see Dr. Cornblath. It was right after I went to Johns Hopkins (about three weeks later) that I saw a SIGNIFICANT change in my improvement. While there, Dr. Cornblath put me on 60 mg every day of prednisone and upped my IVIG amount every three weeks. I got rid of my walker and now have a cane, which I use for safety/security but not in the house except going up and down stairs (which I had not been able to do at all before then), I have little to no issues with my hands/arms. Fast forward to today, about two months later, I'm starting to get a little frustrated as I'm tapering down the steroids but I know I am at fault for some of it as I have been missing the gym and not sticking to the best diet while being crazy busy and over doing it. I am sure that by the middle of January I will be feeling better.

I also want to add that I was told that it was a very good thing I was diagnosed quickly and correctly and started treatment as soon as possible. I am determined to get 100% better, even if it means I have to be "patient".

Good luck with everything!! We should start a group for 30 somethings. :)

13

Hi, Jobe

I have been reading the replies to your post. I agree with Estaban when he said no one has ever been cured from information on this site. This is a wonderful site, but, there is so much information available. May I suggest the The GBS-CIDP Foundation International?

This is a link: http://www.gbs-cidp.org/

As to your questions, it is also my understanding that the sooner after the onset of symptoms, you get the right treatment, the better your recovery. I was 55 years old when I got diagnosed in June 2011, and in remission since October 2012. I have had steroids, IVIG and plasma exchange.

Good luck,

14

Skip.... I am currently taking a Statin drug, have been for about a year and half now.. did you physician say if it was all statin drugs or just one in particular?

Anne

Skiptech said:

Jobe,

Ref. Q #3. I had drop foot, about the same symptoms of you and didn't start treatment until 6 weeks after I was diagnosed. I was weak in the legs and had to walk with a cane. A wheelchair was on the horizon. There was a noticeable difference of improvement after my 3rd round of infusions. In 6 months the drop foot abated. In a year I was without a cane. I kept getting better over the next year. I have been taking infusions for 2 1/2 years now and have an 80% improvement. For some reason over the last 6 months I feel symptoms returning as the rigidness or numbness in my legs has been progressing upward. I plan on seeing another CIDP specialists that my neurologist recommended. I believe the important thing for you to do is everything you can to start treatment. Don't worry about your age, I was 71 when I was diagnosed. I believe my good improvement partly was because they knew the cause of the onset - Statin drugs.

Skip

15

@jeanbell thanks for the information and for offering to chat. I may take you up on that after a confirmation of the diagnosis (LP on Friday).

@harpa2000 it sounds like your mobility was affected tremendously. Sorry to hear that. It sounds like many people suggest finding a neuro with a lot of experience with CIDP, as you did. I'm in a town of 85,000 people. There is 1 neuro here. Based on the rate of incidence I've read I think, at best, he must diagnose 1 case / year, and maybe has a handful of on-going cases. I've not gotten a chance to ask him that directly yet. So I'll likely head over to Duke soon which is about an hour drive. Luckily there are several medical schools and good hospitals within 90 minutes drive in various directions.

@blue topaz - thanks for that link. Someone else referred me there in the last day or two as well. I'll certainly use it as a resource.

16

I was diagnosed in 2010 with CIDP. I also have COPD and Beginning stages of emphysema and just now turned 51. That said when diagnosed my B12 and Vit D were both very low. I never did the shots, as Vitamin supplements 1000Iu (B12) daily and 2000iu (D3) daily have brought me up to the high side but still within the normal limits on both. Each is tested regularly.

I can't say there is no correlation but since levels are where they are the nerve pain is not as severe as it was when the Vit levels were low. I have also been on several medications for pain, trying to find the right one and most important to me one that is non narcotic.

I still fall, and have quit counting; use a power wheel chair when I leave the house, and a cane in the house. Take naps to deal with the fatigue, and exercise as much as possible to the extent that my body can handle it.

Have a safe and happy NEW YEAR.

17

#1. I don't know what my actual B-12 level was because I am a nurse and when I first started having the neuropathy, I immediately began taking B-12...gobs and gobs of it. It's water soluble so it's almost impossible to overdose on it. When my neurologist got around to checking my level, it was high and in the 1300s.

#2. I'm just a little older than you and I was diagnosed back in May. I am getting worse and I was on IVIG, but don't judge yourself by me (or anyone else) as I have several other neurologic/rheumatologic/auto-immune problems going on. We are all like snowflakes.

#3. I started the IVIG about 8 wks in and noticed quite a bit of improvement 9 days after my first infusion. By 8 wks in, I mean from the start of my symptoms. I was diagnosed at 7wk and got the IVIG a week later.

Make sure you hydrate yourself well before your IVIG or you could end up with quite the headache. Peace and good luck!

18

Always available for my cidp brothers and sisters!



jobe said:

@jeanbell thanks for the information and for offering to chat. I may take you up on that after a confirmation of the diagnosis (LP on Friday).

@harpa2000 it sounds like your mobility was affected tremendously. Sorry to hear that. It sounds like many people suggest finding a neuro with a lot of experience with CIDP, as you did. I'm in a town of 85,000 people. There is 1 neuro here. Based on the rate of incidence I've read I think, at best, he must diagnose 1 case / year, and maybe has a handful of on-going cases. I've not gotten a chance to ask him that directly yet. So I'll likely head over to Duke soon which is about an hour drive. Luckily there are several medical schools and good hospitals within 90 minutes drive in various directions.

@blue topaz - thanks for that link. Someone else referred me there in the last day or two as well. I'll certainly use it as a resource.

19

I really wish they could give me a definitive cause for my cidp... It is thought it might have been a Tetanus or a Flu shot as there were no other factors they could find. But they put in my medical records that it was "unknown etiology", even though they told me at Mayo Clinic, the shots are known to cause this. I know some people think~ "What does it really matter?" But it matters a lot to me. Was it something I could have prevented? Was it something that I was subjected to? Something I ate? A vitamin deficiency? I don't like the idea of having been bed-ridden, and not knowing conclusively WHY. I don't like the idea of going through treatment for the rest of my life, and not knowing why. I don't like wondering if my children or grandchildren will be susceptible. I had a maternal uncle that had GBS. I have several family members with MS. One has Vasculitis, One has Wegener's Disease, and there are multiple with rheumatoid arthritis ~ All auto-immune diseases... I am beginning to believe that our bodies have some chromosome~ genes~ etc. that make us susceptible to this. Just guessing...



Anne said:

Skip.... I am currently taking a Statin drug, have been for about a year and half now.. did you physician say if it was all statin drugs or just one in particular?

Anne

Skiptech said:

Jobe,

Ref. Q #3. I had drop foot, about the same symptoms of you and didn't start treatment until 6 weeks after I was diagnosed. I was weak in the legs and had to walk with a cane. A wheelchair was on the horizon. There was a noticeable difference of improvement after my 3rd round of infusions. In 6 months the drop foot abated. In a year I was without a cane. I kept getting better over the next year. I have been taking infusions for 2 1/2 years now and have an 80% improvement. For some reason over the last 6 months I feel symptoms returning as the rigidness or numbness in my legs has been progressing upward. I plan on seeing another CIDP specialists that my neurologist recommended. I believe the important thing for you to do is everything you can to start treatment. Don't worry about your age, I was 71 when I was diagnosed. I believe my good improvement partly was because they knew the cause of the onset - Statin drugs.

Skip

20

People who have had that stem cell transplant may disagree with that comment, however, I have no idea. The biggest problem with these sites, is that so many get a false dx, according to a doctor at Cleveland Clinic. He said of all the patients he sees for a second opinion, who claim to have been dx with cidp, only 15% actually do have it. When I first walked in, (there for a second opinion), he told me it was highly unlikely I had this. Following my appointments, he concurred it was cidp, but when on to say how surprised he was.

My point here- is sometimes, with so many wrong dx'x out there, we are comparing apples to oranges. But I can say unequivocally that these sites have been a life saver to me and many others. The care and support have been amazing. I have gotten so much valuable info, and advice that I use on a daily basis.

Some of the advice I have put to the test- works, some don't. As long as they are not dangerous~ It is worth a try.

It is also nice following the hsct and other hopeful cures out there. New possibilities are looming as I type.

Blue Topaz said:

Hi, Jobe

I have been reading the replies to your post. I agree with Estaban when he said no one has ever been cured from information on this site. This is a wonderful site, but, there is so much information available. May I suggest the The GBS-CIDP Foundation International?

This is a link: http://www.gbs-cidp.org/

As to your questions, it is also my understanding that the sooner after the onset of symptoms, you get the right treatment, the better your recovery. I was 55 years old when I got diagnosed in June 2011, and in remission since October 2012. I have had steroids, IVIG and plasma exchange.

Good luck,