New Diagnosis

Good Sandi - I don't know why I thought the weakness had been going on for a long time.

Yes it was a medical emergency - shingles is!! My MD has told me to come in right away if I feel I have it - if I remember right there is a certain length of time once see rash in which to be started on the antiviral, wait too long and you can't have it as it has gone too far. My husband's friend ignored a rash he had in his groin area, it spread more and was hurting so he finally went in, shingles & past the time when they could give him an antiviral, he was put on prednisone and I don't now what else and it took forever to get rid of, he is very fortunate he does not have the lingering pain.

What's odd about the 2nd time I had it is that the blisters were in a big circle on my back, swear they popped up overnight, and I thought it was a big cluster of spider bites as I first felt the pain & noticed the blisters after I awoke in the morning.

So yes, if you think you have shingles it is a medical emergency as it needs to be treated promptly.

I have had general full body muscle weakness for a long time, but not to the point where I can't tear a piece of paper. That started in my left hand last Wednesday.

I tend to think of medical emergencies as car accidents, heart attacks, strokes, etc. and usually never go to the ER even though I probably should at times. This could have probably waited for Urgent Care the next morning, but you're right, there is a 72 hour window with shingles and since I wasn't sure when the rash began, (although symptoms were present), I didn't want to waste another 12 hours not starting the meds.

Mine are in a circle too and I can't see them unless I hold my arm up in a mirror. Luckily the ER wasn't crowded and I was out of there in an hour. That is record time here, it's usually a 3 to 4 hour thing.

My first case of shingles was in a line at my waist in the back so when I found this huge circle of blisters I never thought shingles - luckily I had a hematologist appointment, this was when I came out of my "remission", and I just happened to mention to her about the cluster of spider bites on my back, she asked to see them and then said not bites but shingles.

Took a while for the pain to go away after the blisters went. I'm just glad you got in right away.

It was kind of funny. My husband drove home from SC on Friday, so he was tired and went to bed early. Right after I found the blisters, I heard him make a noise and knew he had woken up. I went in to the bedroom and said "Hey, I think I'm going to the ER". He said "Why? What's wrong"? I told him that I thought I had shingles. He said, "All of a sudden you decided you have shingles? Can it wait until I get some sleep"? I assured him that I didn't need a ride and I drove myself. He didn't believe that I really had shingles. He should know by now not to doubt me.

Too funny about your husband!

You are like me - I can do it myself. Years ago when I had serum sickness from amoxicillin [didn't know what it was though - only that the pain was extreme and my knees and feet were so swollen & red & hot & very very painful] that Saturday morning I told my husband to keep our plans of taking the boys skiing and spending the night, I didn't want to ruin their fun so I sent them off then drove myself to the ER.

I don't know how you drove with serum sickness. I couldn't even turn over in the bed because my joints were so swollen. The second time I had it (woke up with it), my husband had to be in Pittsburgh for work and it was important. I told him to go. I laid in bed all day unable to even go to the bathroom or get a drink of water. We finally went to the ER when he got home later that afternoon. By that time, I had hives all over me and my face was purple and peeling. Hideous!

I did drive myself to the ER with a broken arm. But yes, if I can manage it, I will do it.

I could not bend either ankle or either knee because of the extreme pain, redness, swelling - oh and it was in my hands too.

This was before ITP hit, my sons were young - you know how you "suck it up" so that you don't scare the kids, that's how I did it so that they would go off and have 2 days of skiing fun and not worry about Mom. Guess I did such a good job because even hubby believed I was doing all right, though he knew I was going to go to the ER.

It was not fun driving to the ER and took me a long time to get from car into the ER once parked - and then from ER to car. Was put on prednisone and said never again will I take that horrible drug. Yeah right - ITP hit and there I was on it again and learned my lesson to never say "never" again

Yeah, I've said that too about Prednisone. Now I can't live without it nor would I want to.

I can usually suck things up too. I had two babies with no meds and didn't think a BMB with no meds was that bad either. But serum sickness definitely surpassed both of those for me by far.

Steroids are terrible! But I know, as most on this website, are going to be on some form of them for the rest of our lives.

I finally got an appointment with a Neurologist! And I'm also being sent to UCSF is San Francisco because my Rheumatologist is at a loss as to what's going on with me.

Sounds good on both counts. I'm glad you are getting the appointments. How strange that your Rheumatologist can't figure this out. I am happy that he knows that this is over his head though and is referring you out. Is the time off of work helping?

I have an appointment with a neurologist next week to see what's going on with my hand. Loss of function is getting worse. I'm starting to fear that this will be permanent. I'm going on a higher dose of Prednisone to see if it will help long-term. I really don't want to lose the use of a hand....I need that!

The time off is a HUGE help because I still am having some trouble with my legs. He's thinks that I have a rare form of Lupus. He thinks it's attacking the muscles in my legs and arms because I do have some muscle wasting in both my arms and legs. But this is just speculation because he's never seen anything like this. I also have a Discoid rash that will not go away and the brain fog/memory problems are getting worse and I'm starting to have tremors in my hands.

Good luck with your Neurologist hope everything is OK!

Have they done a CPK or Aldolase test? My Rheumatologist does those all the time since I also have muscle weakness/wasting. They always come back okay though, so the speculation is that it's caused by years of low Vitamin D and long-term steroid use. Those tests can tell a lot though.

I'm glad that being off of work is helping.

They did the CPK and a cryoglobulin test but I haven't received the results yet. I do go back to the Rheumatologist on Friday.

Well that's good. Sounds like they are on top of things.

I saw a Physiatrist (rehabilitation physician, nerve, muscle, and bone expert who treats injuries or illnesses that affect how you move.) about two years ago for the muscle weakness. He was my Obi-Wan since I'd seen everyone else and they were out of ideas. I thought at the very least, he could help me with some type of rehab to rebuild muscle. Nope. His thought was that it was caused by years of low D and he gave me a script for 50,000 IU's a week. I took it for 14 months before the D level became normal. It didn't help with the weakness. He didn't want to see me again.

After doing research about Vitamin D deficiencies, I read that years and years of low D can make a person so weak they can end up in a wheel chair. Attaining normal levels can reverse that. Apparently that isn't my problem because fixing the D didn't have much impact.

At the very least, I hope they check your D level. It is probably not your problem, but could be a contributing factor.

I will ask about D levels, but I do take 2000 IU's daily as a supplement now. My family doc thought it was a good idea due to taking high amounts of steroids for the last few years.

Dan - I took D supplements daily for years too, but when I was tested, my level was still low. Only the script brought it up and it took forever. As soon as I stopped taking the script, it fell right back down. I'm back on it again.

I just had more lab tests done and my D levels are fine as are my Platelets but my WBC count is high and my Neutrophils are very high but my Lymphocytes are very low. I am not sure what's up with this considering that I take very high doses of Cellcept, Planquinil and Medrol all supposed to suppress the immune system but mine seems to be going crazy.

There you are! I was getting worried. I wouldn't worry about the CBC. My whites are all off too. Lymphocytes have been really low for months. Prednisone can cause whites to go up so maybe the Medrol has caused that too.

Saw the Neurologist. He suggests occupational therapy and said 3 to 6 months for the return of use of my hand. It's about what I expected. I can handle that, as long as it does come back.

That's some good news.

I just got home from my Rheumatologist and he said that he is pretty sure that I have poly neuropathy in my arms and legs.(he's still unsure why) He also decided to take me out of work for at least a year if not longer. He said that I need to start thinking about the prospect of never being able to work again. And I will start having to use a cane or walker in the very near future.

DanC33 wrote: That's some good news.

I just got home from my Rheumatologist and he said that he is pretty sure that I have poly neuropathy in my arms and legs.(he's still unsure why) He also decided to take me out of work for at least a year if not longer. He said that I need to start thinking about the prospect of never being able to work again. And I will start having to use a cane or walker in the very near future.

Dan,

I am so sorry about that news. BUT, you are not at that point yet. Stay focused on beating what the doctor told you. Maybe a second opinion is warranted now??? I don't know what I can do to assist you but if you need some research done on something like that just let me know. I will have your back!

Jeffrey

Dan:

Wait until you see the Neurologist. I went through all of that 6 years ago....was diagnosed with Peripheral Neuropathy in arms and legs. Had many EEG's and other tests, and the decision was to most likely begin Cytoxin to curb the inflammation. It never got to that. It all ended up subsiding in time and now just comes and goes. It flares up in cold and hot weather but I am still walking.

Do you have pins and needles or other sensations? You won't really know what is going on until they do nerve conduction tests, and it is not generally that quickly progressive. Inflammation is huge with Lupus and is the reason for the neuropathy. I once had a Rheumatologist tell me that I probably had MS because I had neuropathy. She was dead wrong and I never went back to her. Affected nerves are pretty common and it irks me that Rheumatologists don't know that.

My Neurologist just told me yesterday that since I already had an affected ulnar nerve in my arm (showed up on EEG's years ago), the shingles just aggravated it which is why I lost the use of muscle in my hand. Makes complete sense.

www.qualityhealth.com/pain-articles/lupus-nerve-damage

I go to a Neurologist on 7/15 and I am also being sent to the Rheumatology department at UCSF 2 weeks after that because my current Rheumatologist has no idea how or even what to do at this point. As far as symptoms, my limbs always feel cold even when it's 100 out. I do get the pins and needles and feeling like spider webs are stuck to me as well as heavy jello like legs. And I have fallen a few times which is why he's wanting me to use support.

Jeffrey71, I do intend to beat this. And with all the help, listening (to mostly me venting) and advice I have received from this forum as been a HUGE help!!

Sandi great article on nerve pain!! I am going to print it and give to my Rheumatologist.

I am very glad that your Rheumatologist is sending you somewhere else. He seems over his head and not experienced in this area, although he shouldn't be treating neuropathy anyway. Since he doesn't seem familiar with this, I'd take what he says with a grain of salt. The Neurologist will know much more, and hopefully he is a good one. I had to see two of them to find the right one. You'll end up with a collection of 'ologists' in the years to come. I lost count of how many I have.

One thing I want you to keep in mind is this: Sometimes the worst case scenario is presented and it never gets to that. I cannot guarantee you that it won't happen, but there is a very good chance that it won't. With the proper treatments from both your Rheumatologist (new one) and your Neurologist, this just may get better. Has your Rheumatologist ever mentioned Benlysta to you? It's a new treatment and many Lupus patients are doing very well with it.

My neuropathy story: About 8 months after I was diagnosed with Lupus, I woke up and jumped in the shower to get ready for work one morning. As soon as the water hit my legs, it felt like I was being stung by 1,000 bees. I thought it was really odd, but kept going with my day. The stinging continued. A few days later, I saw my hemo and mentioned it. He referred me to a local, small town neurologist. I saw him a few weeks later and did the EMG's, brain MRI, etc... He concluded that I had small fiber neuropathy and cubital tunnel (like carpal tunnel, but a different nerve). Both were Lupus inflammation-related. He suggested Cymbalta. I just wanted it to stop, not use Cymbalta which was basically a band-aid. I knew that the symptoms meant damage was occurring so I wanted to suppress it, not just dull the pain. He didn't agree, so I decided I didn't like him and found a Neurologist in Pittsburgh.

In the meantime, I had an appointment with my Reumatologist and discussed the neuropathy with her. She denied that Lupus had anything to do with it. I was still pretty new to the Lupus diagnosis and was very aware of all the damage Lupus can do, so I was pretty sensitive. She looked me in the eye with her hand on the door knob and said, "You probably have MS" and walked out of the room. She had to have seen my expression before she left....I was terrified. I couldn't handle another diagnosis at that time, because I also found out that I had APS antibodies and was afraid of those. I kept having dreams that I dropped dead from a blood clot. ITP never scared me that way. Anyway, her bedside manner was horrible so I never went back to her. Old witch.

So the neuropathy continued and I was getting worried. I'd sit at work and whack my legs with a stapler to make sure I wasn't losing feeling in my legs. Then I saw the second Neurologist and that was when she suggested Cytoxin. I was not happy about the severe treatment, but I was happy that I found someone who was aggressive. Spring came around that time and as the weather got warmer, the neuropathy started to subside. I never did get to Cytoxin, thank goodness.

So, all these years later, I am left with pins and needles all winter and when I am in the sun in the summer. The rest of the time I have bug-crawling sensations in my legs and paresthesia that comes and goes. My feet burn all the time and I am slowly losing sensation. When I'm cold, my skin burns all over my body. When it gets too bad, I wrap up in an electric blanket for a while. It's all fairly tolerable and I have not had to go to Neurontin or any other neuro drug for that. It's been offered, but I don't want it. I do take pain medications every day in addition to immunosuppressants. As far as falling, I have fallen a few times but only when I am walking on uneven surfaces like snow. I am never really solid on my feet because I also have some loss of coordination and am thrown off balance easily. That also seems to come and go.

You will find that there are a lot of doctors who just don't know what to do with you. I had another Rheumatologist at one point who would not treat pain, and insisted that I go to Pain Management. That was a whole other ball game. I found a clinic, but they insisted on drug testing (which most do), but forced an employee to go into the bathroom with me while I went. I was humiliated to say the least. That doctor prescribed Morphine but I never got it filled and decided to go somewhere else. The second clinic wouldn't take me because I didn't have cancer or an MRI that showed an injury like you'd see in a car accident. They'd never had a Lupus patient and had no clue what to do with me. They refused me. I discussed this with my pharmacist who is also a friend of mine and she knew the doctor at the clinic. She called and explained the situation and got me in. They assigned a PA for me and she was fantastic. We did Trigger Point Injections every few weeks and I got a TENS, plus medication. She kept working with me until we found some non-drug options that helped. I had to keep working so I didn't want a lot of meds that killed my brain. I could wear the TENS while I worked and no one ever knew. I did try Lyrica at one point and it was wonderful....felt normal for the first time in years. But then side effects hit and it got really bad. Driving home from work one day (10 minute drive), I couldn't recognize where I was and totally panicked. I had so much confusion that I had to stop taking it.

I went to that office for years, but had to keep being drug tested (state law) and finally one day, I asked another new Rheumatologist (current one) what she did for pain for her other patients and she whipped out her prescription pad. She prescribes now so I eliminated the Pain Management Clinic.

Sorry to be so long, but sometimes hearing other stories helps. I always read about people with Lupus who have remissions, I've never had one. I have the same symptoms day in and day out, with some that come and go and sometimes new ones sneak in there. Everything that happens to me ends up with some complication....drug side effects, a cold that becomes pneumonia....it never ends. You just learn to deal with each as it comes and hope that it is something that will improve. Most of the time, it does improve to some extent. So right now I am dealing with a fractured foot and a left hand that doesn't work. Not totally related to Lupus, but definitely related to the meds that I take for it. Both will get better in time and I sure hope there is a break after that! In the past year I've had surgery for spinal stenosis, two foot fractures, pneumonia, bronchitis, shingles and loss of use of my hand. I'm on my last nerve.

Hang in there, Dan!

He has decided not to put me on anymore anything until I can see the Neurologist. He did mention a few of the drugs you mentioned but he's waiting. He also did mention that he has only seen about a dozen cases for Lupus (we live in a VERY small town in rural Nevada) in all his years of practice and I'm only the second male that he's ever had so he admits he's over his head. He did say that Lupus tends to be more aggressive in men but has no idea why.

Thanks for the info and a little of your history. I know that Lupus affects everyone differently, but it gives some idea of what I can possibly expect as I was just diagnosed and it seems to be a bit overwhelming and all new to me. But at least I'm no longer completely freaking out anymore.(my wife still is)

There was another guy on here, Nate, that has Lupus. He starting using Benlysta and last I heard, he was doing great. He had a lot of problems prior to that. I hope he checks in soon.

Yeah, small town Rheumatologist does not impress me. You definitely need a better one. I think that with the proper treatment, you can improve. It is overwhelming; I agree with you there!

One good thing is that your doctor supports your not working. I had to fight for it. My doctor said "We try to keep people working as long as possible so they don't get depressed". I said, "I'm depressed now. I'd rather be dead than keep struggling like this". That got her attention. I far surpassed the point where I was able to work, but kept going anyway. Take what you can get.

He originally didn't want me to be out for the same reason, he said that people who sit at home tend to be depressed because they can get wrapped in their own heads. But when my legs went out from under me and I fell off a ladder at work that was the deciding factor. Plus the fact that my boss was afraid that I would get seriously injured. So he even put some pressure to get me out before anything could happen to me. Plus he's telling me to take all the time I need and that I will always have a job when my health returns, so that took a lot of pressure off.

Unfortunately my Rheumatologist is THE Rheumatologist, he's the only one for over 50 miles and I have a friend with MS and Lupus who's seen every doctor for 100 miles and says that he is actually the better of them. So I get a two day (or more) trip to San Francisco to see their Rheumatology department. :woohoo:

You have to do what you have to do. We have a shortage of them here too. At one point I was driving and hour and a half, but we got a local one that is affiliated with a Pittsburgh Hospital, so I changed doctors once again. I think I've had 5 Rheumatologists over the years.

Ha, the street that she is on has many doctors offices. I go to six different doctors just on the one road.

Hey all you gals and guys! I have not popped in here for awhile but I got a message from Erica from Facebook asking for me to take a peak which I am glad to do. Hello Dan. I am just about to get ready for Father's Day Lunch and have been lazing about so I havn't had time to read through all the posts, but I read your first few posts and skimmed the others. A lot of what you are going through is very similar to what I went through in my first years of illness.

I started with having frequent nosebleeds and feeling overall very fluish all the time. I went to get a checkup after I was getting so many bloody noses just driving to work or doing simple every day tasks. The family doctor actually dismissed my extremely low platelets as related to a virus, and didn't even MENTION my platelets were below 50 at the time. I only figured out my labs were bad when I asked for a copy of my labs and thought "WTF?!" I was a new RN at the time so I knew something was wrong. I called the doctor and was referred to a hematologist. He is a great doctor, and we went through testing and after eliminating several things (the scariest being HIV from patient care, which was negative thankfully!). He eventually diagnosed me with Idiopathic thrombocytopenia and we went into the Prednisone and it helped immediately, and then we would start the weaning.

Weaning never worked for my ITP, and I believe I refused chemotherapies and since my platelet counts were below 5 I became quickly eligible for a SPLEENECTOMY! This was one of the worst days of my life in the doctor's office. I had to go in to the doctor the previous day I had a broken blood vessel in my eyes because my platelets were near nothing and they told me to either be admitted or come back in the morning for another set of tests. They told me I could bleed out over night at home, but it is not super likely so it was up to me. I actually did go home and went to another doctor's appointment first thing in the morning.
At this appointment they saw my platelets were critical and my hematologist told me I needed to get my spleen out at this point. I remember being stunned that I was going to have to get an organ removed! I started crying in front of everyone and said I didn't want to do that, I didn't want my to get surgury. I had to call my parents and while crying hysterically my mom and dad came into the office to talk to me. My dad told me all he remembers is me crying and sobbing and repeating "I don't want to do this." I was literally crying so long they had to take me out of the patient room and make me wait elsewhere, which now that I think about was kind of mean, but oh well.

So finally my hema couldn't make me budge and I refused to get my spleen out (my gut & spleen was telling me it was a bad idea and way too drastic) and told then the hema talked about Rituxan. Rituxan which was brand spankin' new and off-label for ITP. My hospital based health insurance covered it and I got Rituxan in 2005. It helped me significantly, but I could not get off Prednisone completely I think is how I remember. My platelets always hovered in the low 100's or slightly below after Rituxan and we did repeat Rituxan a few more times. I will mention Rituxan possibly drastically decreased my WBCs and Lymphocytes or at least the decreased counts started after Rituxan.

So I was on thin ground for a couple years after Rituxan and then I started having frequent 'infections' which my docs and I blamed my low WBCs. At the time I was so happy to be fairly well that I basically disregarded symptoms I had and kept trucking on until a whole load of symptoms caused me to see an internist and realize I was in kidney failure which with my knowledge today I knew I was latently wondering why I felt sick all the time, was drinking tons of water, and my pee was causing a lot of foam in the toilet (protein in the urine). I also was trying to lose weight at the time and I ended up unknowingly dieting while in Kidney Failure and taking an appetite suppressant and I ultimately lost 120lbs...which I was very happy about but it was a dangerous game. I didn't know I was in kidney failure or that I had SLE at the time. I just knew I was losing weight not that I was leaking protein from my bowel and kidneys and basically absorbing less calories.

So in the Summer of 2007 I was basically not able to do my daily acts of living such as showering, etc and I was getting horrible fevers in the 104degrees, my eyes suddenly got swollen all around which I consider to have been Third spacing due to my kidneys failing, but my rheuma at the time said it was a rare autoimmune type of symptom but anyway my schlew of symptoms got me admitted to the hospital for nearly a week and I was put to the top of the list with my current Rheuma who visited me in the hospital and diagnosed me that week with Lupus - aggressive Lupus since I am a male with asian descent and very young (23 at the time, 20 when I got ITP). My extremely high fevers eventually became the main symptom that tracked my flares. Any time I got a high fever I had a confirmed flare.

We immediately did Prednisone high dose and Plaquenil. I pushed my Rheuma to give me Rituxan again but he refused until I tried other treatments. So for a few years we played the Taper Prednisone game tried Cellcept which did nothing, and a couple other meds and I tried a few natural treamtents which did not work. I kept pushing for Rituxan because my gut was telling me it was all the could help me at this point. Eventually my Rheuma approved Rituxan for my Lupus after I traveled to Iowa City for a Second opinion and Second reccomendation to send to Insurance. It was covered and I received Rituxan I believe in end of 2009 and in 2010 again. It helped again. My symptoms improved maybe 50% and many of my labs improved especially my C3/C4. That started the new Prednisone and Cellcept wean. I got off Cellcept, and eventually down to 10mg Prednisone a day. But the problem was I was still having flares with anything below 10mg even at 9mg and I felt like crap at 10mg.

I was at the time following several Lupus pipeline drugs and I had been following Lymphostat-B since the beginning when it wasn't even named. So end of 2010 I believe I said forget this I am DONE. I told my doc I am STAYING ON 15MG Prednisone and going ALL IN on Benlysta (Lymphostat-B pipeline name). My rheuma was very pessimistic, but I followed my gut again. I believed it would work since Rituxan had half-worked and Benlysta was like an amped up Rituxan for Lupus in my opinion. Not to mention I was sick of the rollercoaster...I wanted quality of life. I went on a lot of pain medication and Prednisone and worked as well as I could with life waiting for Benlysta to approve.

My heart dropped when the FDA delayed Benlysta end of 2010, but it was then approved in 2011 and I received my first dose in April 2011 if I remember right. A side note my damn doctor MADE me have another flare before giving me Benlysta!!! ANYHOW... I got Benlysta every 4 weeks from there and after a few months we started tapering my Prednisone 1mg a month from I believe it was 13mg a day. By Christmas time 2012 I was off Prednisone completely! I have not had a single flare since and I am doing really well. I am down on all my meds and getting down on my pain meds - and Sandi knows how many pain meds I was on. I mean my Uncle is dying from ALS which I hope is not my future as my family is all worried...but I was taking more pain meds than he is right now. So now I am only on Vicodin. Anyhow...I work overtime all the time now, I took up guitar, wrote a fiction novel that I'm working on editting, and lots of stuff.

So life does often get better, but I am a rare case that went from the pits of aggressive diagnosis and by a miracle Benlysta worked for me. I am one of the few people that Benlysta worked for perfectly. From what I read in your posts I would suggest:

Consider Rituxan, Keep your Spleen (my rheuma tells me to this day keeping my spleen was the best decision of my life because it would have made all other treatment options much more complicated KEEP YOUR SPLEEN as long as you can!) don't be afraid to slow down in life to take care of yourself, get second opinions and find a doctor you go to and feel comfortable with (get a SMART doctor, dont get a doctor that is too mushy holistic), Look into Benlysta if you can.

Just as a side note, when you said your legs gave out from under you, you have muscle wasting, and your hands are having problems...has your doctor looked strong into atrophic amyotrophic sclerosis?

So I gave you some of the important points of my medical history, I left out a lot of events but I tried to hit the primary parts. Us guys got to stick together! Let me know any of your questions that I can try to answer.

Nate

Wow! it sounds like you've been through a lot. And yes it does sound like you were on a similar path to what I'm on now. I have done Rituxan(a total of 6 rounds over a couple of years) It does seen to be holding my platelets steady. (last count 170) And EVERY time I see my Hematologist he wants to take my spleen. But I have always refused to do that!

My Rheumatologist did try to take me off steroids a couple of weeks ago but it just made everything worse. But he is in so far over his head that he is sending me to a couple other doctors to figure out what's wrong. So here's hoping!! One of the new docs is one that specializes in weird/rare diagnosis, even though he never said anything about it. (I looked up the doctor on his website)

And yes we guys must stick together!!(the ladies have us far outnumbered!) So keep in touch.

Thanks Erica for reaching out to Nate on my behalf.