Searching4Answers
Forum Replies Created
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Dear Price,
I feel that I have to respond about finding a neurologist who will LISTEN AND is knowledgable about LEMS. I am not sure which is more important. Good neurologists are in short supply & extremely busy. It seems like many are further specialized so even harder to get appointments. I am currently on my 8th neurologist & I am still searching for a confirmed diagnosis-hence my Searching4Answers 🙂 Some I fired, some were specialists in diseases that were eventually ruled out, so I moved on. BUT the most important was/is the relationship.When I met with my current neurologist, I prepared a “blurb” about what I expected from her-“willing to allow me to be an active partner, both in treatment & or diagnosis” and “someone who would value and respect the self-awareness that I have learned about my body to help guide treatment”. It is so frustrating, depressing, and a whole bunch of other adjectives when a doctor tells you that what you are feeling or noticed is “invalid” or doesn’t fit their concept of what you should be feeling. It is extremely stressful to find a new neurologist for several reasons.location-cost-accepting new patients-etc. But our health, how we want to live, our quality of life, all of these things, we have to be the lead on and responsible for. Forums like this help in letting us know that others have the SAME issues and problems. We are not alone. Actually, many patients of “chronic” diseases have EXACTLY the same issues, Lupus, MG, ALS. We have to stand up for ourselves with moral support from people like you and Ashley.That’s my 2cents. Sorry it was so long -
I had 1500 marked in my calendar so I thought that I had registered somewhere. Usually I get a link sent to my email but I couldn’t find anything for this. I also have HAE-another rare disease but I didn’t find a link in that file either….the computer fairies must have eaten it 🙂
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I thought I signed up for this or registered for it but I don’t see a link in my files.
Do you know what the link is to join this conversation? -
Hello
I just found out that there actually is an organization called ” Immunoglobulin National Society”
https://ig-ns.org/ that has everything about Ig. They are having a free patient conference 21-22 May which you can go to their website and register. It will cover everything from Ig side-effects to different brands to insurance problems.
Hope this helps
still Searching4Answers
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I went all out and bought the Black Diamond brand with the cork handles. I researched different types and that brand seemed to have the best reviews. They can be broken down to a small size if needed to carry in plane or somewhere that you don’t want to trip unsuspecting passerbys 🙂 You can also buy rubber tips for them which I did so that I can use them inside.
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Hi Price,
I remember the days when the strength ran out before the IVIg. Then the miraculous boost it gave..until before the next infusion. IVIg was taken away from me for reasons I won’t go into here but I might have a suggestion to make the walking easier. On my weak days I have found that the hiking poles that hikers use really help. I bought mine at REI but I’m sure other outdoor stores have them. What I like about them is that the height can be adjusted so one can stay upright and not bent over. The poles add a bit of propreoception which helps both balance and speed. Canes and walkers cause people to stoop and lean over which I could never understand why that was considered healthy movement
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Oh Price, I feel your frustration! AND you have an official diagnosis from a neurologist who is supposed to understand the disease. I’M still undiagnosed. The more specialists I see, the more I realize they are removed from how different diseased affect the patient in everyday life. They don’t seem to understand how the medications they prescribe affect us-both in good ways-the IVIg magic elixir and the bad ways, side-effects of mestinon and steroids. They evaluate cases through test results and 15 minutes snippets of time every 6 months. They don’t see how we live everyday with the disease and how each day is different. They don’t realize how much self-care and effort goes into maintaining Quality of Life. I just got told yesterday that since I no longer show P/Q VGCC antibodies, that I don’t have an autoimmune disease and she is discontinuing IVIG. I KNOW that it is helping me but she won’t listen. So now I have to find a neurologist who will..Why is being an advocate for trying to be healthy SO HARD!
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Hi Price-Good going. Knowledgeable individuals in physical therapy, yoga, massage, accuputure, tai chi etc are the ONLY people that have helped keep me out of a wheel chair so far while pursuing a final diagnosis. The good ones are willing to educate you about your muscles, how a “normal” person uses them & then explain how a person with a particular weak muscle, compensates to do the same movement. Many times, this compensation or using the wrong muscles for movement causes the pain or worse joint injury or inflammation. It has taken me a bit of study to learn the muscles that are giving me problems and how I have been compensating for them, but now that I know where I am weakest, the PT has designed exercises to help strengthen those muscles BUT with the knowledge that I can’t push too much or I crash. They also know to watch how I am doing the exercise to make sure I am strengthening the muscle intended & not compensating with other muscles. If I fall into old patterns, it usually means the exercise they gave me is too hard, or I am too tired that day. I have gained strength, kept even in others and on bad weeks, lost. I have also used electrical stimulation & kiniseo tape in PT.You mentioned before that you try to walk everyday. I WISH that I could do that. I really admire your effort to do that.
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Hi Ashley,
I am still “officially “ undiagnosed with LEMS since I was only positive for P/Q VGCC while on IVIg. However my dose is 2g/1kg. This was prescribed for polymyositis, which has since proven false diagnosis. I get 65g on one day every other week for “ monthly dose of 130g. I am 155lbs=70.3kg. I asked neurologist for every 2 weeks because it was only lasting 7-10 days before the energy went down & the “veil of exhaustion “ came. Every 2 weeks seems to keep me more level both strength and energy wise. But again I caution my diagnosis is still unclear after 5 years. The EMGs show post- vs pre- synaptic neuromuscular junction defect but seronegative for MG. However, the symptoms mentioned in this newsletter and response to mestinon, IVIg & prednisone are how my body feel. I have to find a neurologist who will LISTEN to me about how I feel & respond to drugs and work with me as to why as opposed to only thinking inside the normal disease box
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Hi Ashley
I think this url will get you there. I have signed up for different scientific publications and sometimes I get links that do not work for those who have not registered. This is a “pre-publication” and is not yet peer-reviewed, but the science is valid.
https://www.medrxiv.org/content/10.1101/2021.04.05.21254656v2.full-text
This link was passed on from a molecular biologist giving a class on COVID for INR. If anyone is interested, I take on-line seminars on several topics from the Institute For Natural Resources (INR) https://www.inrseminars.com/
This company gives course that give credit to several medical professions to keep their current licenses up-to-date. I have found there seminars VERY informative and useful, from Meditation to Food as Medicine
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There is also more evidence that those of us on immunosuppressants, as little as 5 mg daily, I was on 20 mg, that the efficacy of the Moderna & Pfizer vaccines is reduced ten-fold. I don’t know about the J&J as the studies were only on the other two. Bottom line, I am going about life as if I am not vaccinated. It is easier for me though because I do not have kids or grandchildren or family close by. I am also retired so do not have to worry about the work place. It will become even more dangerous as people stop washing their hands, surfaces aren’t cleaned as often & people will “fudge” the truth if they were vaccinated or not. Just be aware and do what is right for you to be safe
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Hi Price,
I’m still searching for answers,meaning different neurologists either diagnosis me with autoimmune or genetic, depending on if they listen to me or only hear what fits their specialty. One suggestion was Mestinon, which helps strength and oddly enough dry eyes & mouth. However, I was getting cramping in my hands & one neurologist says Mestinon (pyridostigmine) can cause low potassium, which can cause cramping. I’m thinking Mestinon makes me pee more.pI’m working with a dietian, who said the body pees out potassium pretty quick so I was not afraid to try potassium citrate supplements from Pure Encapsulations brand.When cramping starts or I have been using muscles hard, I take just one & they go away.
Hope this gives you another idea -
Hi RDT
Darn I had an answer typed then hit something on the screen & got logged out! Anyway, I also find the texture & size of the 60mg tab hard to swallow. When I first started my dose was half a tab, then 3/4 a tab. The pill is scored so is fairly easy to cut, even better if you have a pill cutter. My pharmacy gave me one. Anyway I found it easier to swallow the tab in tinier pieces than one whole big one. I also rounded off the sharp edges a bit & licked the powder off my hand so not to waste any. Maybe this might help you but if the liquid is working for you do whatever is most helpful. Everyone is so unique in how certain things work best for them -
HI Dorothy
Welcome to the group. Getting outside & moving is so important for so many reasons. Nature /gardening is very calming. I took a walk in my gardens today and noticed that I have several blooming hellbores now. sometimes called the Christmas rose. The sun was out so I got some vitamin D and the sunlight helps the melatonin for good sleep at night. Since there are so many sugar goodies around now, a good diet is difficult but it is so hard to eat just one!
Merry Christmas to All
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HI Ashley,
I was having headaches until I got 500ml saline before AND 500ml after. Hydration is Very important for me. Also, like Price above, my rate was WAY to fast for the 1st couple of courses. It was slowed down to no higher that 90 for 4-5 months. Then they started inching it up to 120. It starts at 30 like Price, then 45, then 60 but final rate no more than 120 for me. I hope this might help. My IVIG nurses are absolutely wonderful & do every thing possible to make me comfortable. After about 4 months, the saline started to bother me. My nurse started warming it before infusion and that did the trick.
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Price
I’m sorry to hear that you have another problem to address. Life sometimes seems to keep piling things on.
In my research, there is a lot of information out there that diet does have a lot to do with disease. Food is Medicine. I hope that you can find a dietitian to help you with an autoimmune diet that is easy to follow , easy to prepare and most of all tastes good. It does exist! I have found that webinars from the INR are very informative. I have taken some on the Gut brain axis, Sleep & Healthy Mind & body through meditation.
the url is
http://www.inrseminars.com/Seminarsr.aspx?st=Webinars
Good luck
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I saw this in October but then I could not find it again. Could this be a separate forum as this drug is also a common one prescribed for LEMS as well as Myasthenia gravis. It is interesting to me that some drugs for MG work for LEMS & the other way around too. Lems is a pre-synaptic neuromuscular junction problem where MG is a post-synaptic problem. I still have no diagnosis but I started pyridostigmine to see if it would help strength. The very first thing I noticed the next day was waking up with less dry eyes and mouth. Then after a couple of weeks, I noticed that it was helping strength. I also just recently started prednisone as I know that helps my strength but depending on the doctor, some don’t like prescribing it.
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I can’t find the post now but I think it was Price who said when he started pyridostigmine[Mestinon] he really noticed a difference when he went to the gym on the treadmill. I was hesitant to try it because of the side affect of diarrhea but while awaiting a diagnosis, I was getting really weak & decided to give it a go, but at a low dose The next day I immediately noticed less dry eyes and mouth in the morning but I didn’t really notice more muscle strength until a couple of weeks later when I missed 2 doses due to a medical screening procedure. I still have to be aware of which dose affects the bowels but it does seem so far to give or at this point “hold” the muscle strength.
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Price, I get the Lambert Eaton News in my inbox and read the posts and so much of what you say has hit home. I mean to answer you but then I get “squirreled”. I finally decided I just had to stop all my research & other things and just write. Hopefully I can get all my answers in the correct forums as I have never been “online” before. I am still waiting for a diagnosis but I was on IVIG therapy for 15 months. On the recommendation of a neurologist I discontinued so that they could re-test autoimmune antibodies. When I 1st started, the IVIG was every 4 weeks. After the first couple of doses I Really noticed a difference in how well I could climb stairs, but by the 3rd week, I was exhaused & dragging. I keep notes on how I feel & also noticed that the IVIG started “wearing off” after 7-10 days. So I asked my neurologist to divide the monthly dose so that I got 1/2 every two-weeks. I figured that every 2 weeks would prevent the crashes. That did work to some degree but then the IVIG seemed not to help me as much as when I 1st started it. It’s almost as if I built up a “tolerance ” to it. For the IVIG newbies, my very first IVIG course was a TERRIBLE experience. It was 5 days, a new nurse came to the house every day, they ran the infusion rate way too fast for My body & I was NOT hydrated enough & my arms reacted to leaving in the catheter. After the 3rd time, I had 2 nurses that figured out I needed a flow rate of no more than 90, 500ml saline before & after AND my arms would not agree to leaving in a catheter. Once all the bugs were worked out, the IVIG therapy went fairly smooth. So not to scare anyone off, just educate yourself on the process before hand so you know what to expect and don’t be afraid to ask questions and insist on changing things if you have a headache or are uncomfortable in any way. Everyone’s body is different. Some don’t need as much hydration, others like me need a lot.
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“The standard” dose for myositis patients is 2mg/kg, It was originally this amount over 4-5 days every 4 weeks. So that is a whole 1mg more than what you stated for LEMS. I eventually got it down to doing the same amount but for 1 day every 2 weeks. My nurse had to start a new IV every time since my arms would NOT tolerate leaving the catheter in, so that is why I opted to do 1/2 the dose in 1 day. I split the month because IG seemed to only last for 7-10days. I figured I would not run out of steam so much if the IVIG was every 2 weeks. The shorter intervals between doses seems to help a bit. To control the reactions on the arms I pre-med the day before the infusion with histamine receptor blockers & 20mg oral prednisone. Histamine has 2 receptors, type 1 & type 2. Research has shown that when someone has a reaction, it is better controlled by using both H1& H2. H1 blockers are Benadryl, Zyrtec, Clariton & weirdly H2 blockers are some of the older heartburn medicines. I take zyrtec the night before and cimetidine, which is Tagment HB, the morning of. Then the day of the IVIG, I take 650 mg Tylenol, I get 500ml saline pre & post, 20mg Solu-medrol (a type of steroid) pre& post. I also do 1500IU Berinert, which is human C1-inhibator, pre-IG. With this protocol, I have controlled all the IG side effects & have controlled the HAE attacks.The real key to the headaches was the 500ml saline pre&post. My nurse also warms it because the cold saline was making my arm ache. The only problem is, I don’t seem to be stopping the progression of the weakness as much. Granted, before the pandemic hit, I was moving a LOT more. I was doing strength training 3x a week, yoga at least one time, massage and accupunture. I think the lack of all of these other things has hurt me. Actually I know it has. Movement is MEDICINE.
Anyway, that is my probably too long of an answer. But my gut really tells me it’s LEMS. Just the way my muscles react once I “wake” them up it the main reason. That is how I eventually stumbled on this forum. I googled activation potentiation trying to figure out why the second set on the weight machine was most always better than the 1st. But I could NOT keep the muscle or gain strength. It was very confusing & frustrating to me. My trainer was also confused. But LEMS explains it all. Now I just have to get the correct combo of drugs.
You mention that both of your complement levels run low. Just to make sure that we are talking about the same thing. There are nine major complement proteins, which are labeled C1 through C9. In hereditary angioedema, I have very low C1-inhibitor and low C4. Other diseases may show low levels of some of the other proteins. Low C4 may point to lupus or RA. Some people have low C3 which leads to all sorts of problems.
I am currently awaiting the results of a whole exome sequencing [WES] ordered by a doctor at the Mayo clinic. There are some congenital myasthenic syndromes that mimic LEMS which she is looking for. The treatment depends on where the problem lies in the chemical magic that goes on at the neuromuscular junction. I tested positive for the voltage gated calcium channel[VGCC] autoimmune antibodies but she said that IVIG can give false positives for autoimmune antibodies. [I researched that and darn it looks like it might be true] My EMG was abnormal but did not show the “normal” LEMS CMAP. However, she said that my IVIG could be partially treating the LEMS.
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I just recently found lambert eaton new & I am still reading all of the different topics. I am currently awaiting a final diagnosis for LEMS. Everything that I have read of the LEMS patients experiences really hits home with me. Interestingly, I have been on IVIG for a little over a year now but not for LEMS. I was tentatively diagnosed with a form of polymyositis so my doctor agreed to let me try IVIG. From my research I was pretty sure I did not have polymyositis but I knew there were many other autoimmune diseases out there that IVIG would treat. I just found out in July that LEMS was one of them. The IVIG really seemed to help me for about 6 months- June to about Jan of this year. However, it only seemed to give me strength for 7-10days, then “wore” off. I started at 5 days every 4 weeks but by the 3rd week I was Dragging. The 1st couple of infusions were rough though because they did not hydrate me with saline pre & post-they had the flow rate too high for me, & my arms were reacting to the catheters being left in. My arms would get red streaks about an inch above where the IV stick was, then slowly the rednesss would spread out to oval patches. Because Benadryl would take the redness & warmth down, we knew it was a histamine reaction but if not controlled my arms would swell. I, like RDT, also have hereditary angioedema, which when I read above was very surprised. It is very rare! What I discovered during my research is that IVIG activates the classical complement system. HAE patients have low C1-inhibitor. We infuse by IV or do SubQ for C1-inhibitor. If I didn’t get the histamine reaction under control by cortizone cream or prednisone, then the HAE would take over. I have a Wonderful infusion nurse & she worked with me to get the correct pre-meds, the proper flow rate for me & timing of the IG. I now get my dose in 1-day every 2 weeks. I now have no problem with the IVIG. BUT as a patient you have to be REALLY proactive & do your research. If I would have educated myself on how IVIG should be administered & the proper premeds, I could have prevented some bad reactions the 1st 2 times. IVIG now doesn’t seem to be as effective as it was at first .So now I am waiting to get an “official” LEMS diagnosis so that I can try Firdapse. I did have to increase my prophylactic dose of C1-inh tho. I’m not sure if RDT above is also on an HAE drug. There are many options now & I hope that she can investigate them.
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I admire your willpower. You are right in that if we don’t use our muscles, they atrophy. Logically, I know I have to move to keep strength but just standing some days is hard. The top of my body feels so heavy for my legs. Then the less I move, the less I want to, the less I can..it just spirals. It is so hard to fight the exhaustion.