Hi,

I'm new to the forum and thought I'd chime in because I could really use some advice. I am 28 years old, and until recently I have been very healthy. After several weeks of health complications, I am now I am facing a possible MG/possible MS diagnosis.

I just finished up six weeks in the hospital (brutal!)--two in an acute setting where I underwent every test my docs could think of to help them settle on a diagnosis, and then i spent four weeks in acute rehab, trying to regain the ability to walk.

In a nutshell, I have

* severe weakness in both legs (improved somewhat with IV solumedrol steroids at 1000mg/day for five days. I still require a walker/crutches to get around)
* a 3cm lesion in the left motor strip of my brain
* oligoclonal bands in my CSF
* ACHR modulating antibodies (56%)
* striational muscle antibodies (1:120)
* extreme fatigue and head fogginess
* a host of other unexplained symptoms and labs

As of right now I have no diagnosis and I haven't found a neurologist who is willing to engage in my complicated case long term. Half of the neuros I've seen say it's an atypical presentation of MS, while the other half say it is definitely not MS. I just recently had the ACHR and striational antibodies turn up. The doc from the hospital (the one who ordered the tests) seemed in a panic about following up on them, but the neuologist I just met with said this is MS and we shouldn't be worrying about anything else. He didn't even want to look at the ACHR labs. So dumb...I am ready to give up on the whole thing.

I am hoping something about my case will sound familiar to someone who can help. I am starting to think there may be more than one condition at play here. Is is possible for the ACHR mod and Striational Muscle antibodies to show up without having MG or thymoma? Is there anything else that could cause those to trigger positive? Does anyone know if the actual numbers (56% and 1:120) have any significance?

Has anyone heard of MG or thymoma causing such severe paraparesis (leg weakness), oligoclonal bands, or a brain lesion? I'm guessing not.

It's all so confusing, and I'm emotionally exhausted from this whole thing. If anyone has any thoughts or suggestions, I'd love to hear them.

Thanks!

Mandy

I'm not a doctor, but I believe that MG does not present with oligoclonal bands or brain lesions. That sounds like MS. The ACHR antibodies certainly point to MG. It could be you have both conditions. You need a good neurologist who can help you through this. Are you in a big city with excellent specialists?

I hope that you are able to find a doc who can help you with this quickly. I can sympathize with you. The unanswered questions are so frustrating.
Keep us posted on how it goes.

Hi Mandy,

There are a few things that I wanted to say that I hope could be helpful. First of all, I am sorry to hear that you are going through all of this. I have been in the hospital 30 days in the last year and it has been hell so I really do understand.

So, you only had 5 days of medication treatment for all of this? If, for example, you do have MS and MG and you received steroids-- that could be helpful for the MS but could make it difficult for the MG because they are relatively contraindicated and some people have a harder time than others on them. Did you have a paradoxical effect with any symptoms?

Yes! You can have extreme leg weakness in MG. I have it when I am doing poorly and during ivig and during exacerbations. I cannot even lift my legs off the couch at all when it is bad. In the hospital, I could not even stand. I would just collapse. The collapse went on for a week but before I was on the right treatment for my MG (ivig), I needed a walker to walk for over a month after a 9 day hospitalization and then I went into crisis again. Then I got 5 days of ivig for the first time and I walked unassisted again a few days later for the first time in 5 weeks. It was amazing!

Not sure why they didn't try ivig since it is used for both MG and MS and they are they most likely scenario right now for you it sounds like. You may want to ask or suggest it to the next doc. I mean you have aChR antibodies and that is pretty much a clear diagnosis for MG from what I understand--not that I am a doctor.

What are your other symptoms you haven't mentioned? Maybe that would help us understand more.

What state do you live in? An academic hospital might be a good place to try.

debra

Thanks for your thoughts Violet and Debra. It really helps alot. To answer some of your questions:

Violet--I am in Phoenix and we have Mayo and Barrows here, which is great. The only trouble is that one of the most unhelpful docs I have met with was at Mayo. He said this was definitely not MS, but when I asked him what he thought it was, he said I am a very complex case and we can't say right now. Rather than being helpful and offering a plan to move forward, he completely dropped the ball. I think he wanted me to drop him as a neurologist. Guess he got his wish. I saw a second neuro specialist who was short, rude, didn't want to hear my questions, and didn't want to look at the ACRH antibody labs...he said they weren't important and we needed to just focus on the lesion (which he didn't do). He spent about five minutes with me and rushed me out the door, telling me to stop worrying. I felt it was really irresponsible of him to refuse to even look at the ACHR and striat antibody results. I am guessing he doesn't know anything about them.

I do have a referral into Barrow's (from the director of Barrows neurology who is a friend of a friend) but so far it has taken them almost three weeks to even schedule an appointment, let alone to be seen. I called to check and they said "oh yes, we have all your information and the referral, you are on our roster to call and set up an appointment. Sigh. What can I do? It's going to take forever no matter which direction I head.

Debra--I'm sorry to hear that you've spent so much time in the hospital. I used to think the hospital was a terrible place to be, but I had no idea what it really could be like until all of this happened.

Interesting about the steroids being contraindicated for MG. I actually read that somewhere yesterday and wondered about that. I had a horrible time on the steroids (partly because they were giving me the max possible dose at 1,000mg/day) It actually landed me in the ICU. When I arrived at the hospital I was extremely weak, but with PT I was able to stand. After the ICU and the iv steroids, I could no longer even stand. I thought the decline was because the episode hadn't hit rock bottom yet, and the fact that I was bed bound for so long...but now I wonder if maybe the steroids made it worse. Who knows. There are so many things that are hard to explain.

Yes I only had five days of actual treatment, though they did taper me off the steroids with an oral prednisone for about two weeks after the iv. They never even considered MG while I was in the hospital, so IVIG wasn't ever discussed. The MG antibodies are a recent lab turned up by the Mayo doc, who after treating me like a psych patient and dismissing my case, had his nurse call me four times in a two day period to tell me he had very important labs he needed to follow up on. Maybe I should have dropped my pride and let him follow up, but I just don't trust him. I do however, need a doc to help me follow up on these results. As mentioned above, the most recent neuro told me he didn't even want to see those MG labs and rudely told me to stop even thinking out them, to put them out of my head because they were nothing. He was so unprofessional.

I would be curious to know how IVIG could help since I am still using a walker and crutches, but I currently don't have a doc to ask. Still searching for a neuro and hoping the Barrow's referral will pan out.

Question for the group though: The MG labs are not something that can just randomly turn up positive, right? They aren't something I should ignore?

Thanks for your thoughts and for any future thoughts. This is really helpful!

Mandy

Oh, you asked about other symptoms. I was trying to leave out the long list of possibly useless details (many of them could be related to the steroids) but since you asked, here goes:

Unexplained Symptoms: Bradycardia (heart rate in the 40s), respiratory distress (landed me in the ICU), Polyuria (my kidneys were putting out 3 times the liquid i was taking in), Liver enzymes (ast/alt) were almost four times the normal range and creatanine levels also abnormal. Heart palpitations, low platelets (down to 100), resting heart rate fluctuating between 44 and 110, blood pressure varying between normal and extremely low (70's/40's at its worst), I test positive for Rocky Mountain Spotted Fever and Typhus (docs are certain these are false positive but they dont know why they keep turning up.). My glucose has been high, and several other minor lab entries have been off. My muscle weakness (feels more like a head-muscle disconnect than a weakness) also affected my left arm. The degree of weakness seemed to fluctuate from day to day which was baffling to me. At one point I had mild stuttering, and I have some mild short term memory loss. I have noticeable muscle loss in my quads. At one point in rehab I lost control of my trunk and neck muscles (I was falling forward or to the sides in my wheelchair). I have muscle spams with stretching and use in my legs, though it is improving as my strength improves.

My initial symptoms included an extremely foggy/fuzzy head, dizziness, loss of balance, extreme knee and hip pain, muscle aches, fatigue, a feeling of pressure in my head, insomnia, neck pain, and difficulty organizing thoughts and processing tasks like showering or making a sandwich. That lasted for about seven weeks before my legs started failing me. When my legs started giving out, my mom took me to the ER and that is when I was admitted.

I'm sure that is WAY too much detail, but you did ask Welcome to my world of disorienting details. I am mostly trying to focus on the main things I mentioned in my first post: what explains the brain lesion, the oligoclonal bands, the paraparesis, the ACHR antibodies, and the striat muscle antibodies?

It helps to know that MG can cause the paraparesis.


Thanks all!

Mandy

Hi Mandy,

I don't have any insights into your condition, but just one thing to offer. If Barrow's doesn't work out, you might try Dr. Kumaraswamy Sivakumar at the Neuromuscular Research Center in Scottsdale. Although I didn't get answers for myself from either Dr. Sivakumar OR Barrow's, at least Dr. Sivakumar was very kind and understanding, put a LOT of thought into my case, and ran several tests for several conditions. Barrow's didn't even do an EMG. Also, once my referral to Dr. S was approved, I got in to see him within a week. I also think Dr. S is intrigued by puzzles and difficult cases, and I got his name from a well-respected pediatric neurologist who said Dr. S is his go-to man for opinions on difficult cases. The only thing is that he is a neuromuscular specialist, so MG is right up his alley but I don't know about the MS

I hope your experience with Barrows will be more satisfactory and you won't need this suggestion.

Tatia in Peoria

Wow, that's actually really helpful. Thank you!!

Mandy

Some physicians are very arrogant and with relatively poor bed side manners. Still, they may have good clinical skills and responsibility. You may be right not to trust him as your long-term physician. You may also be surprised in a second visit (some physicians need time to adjust to their patient or possibly you may have happened to see him on a less good day). Either way he seems to have seriously thought about your relatively complex illness and possibly be on the right track to figure it out. Even if you end up going else-where and finding a more pleasant neurologist, it will make your (and his) life easier if you have a clear-cut diagnosis from a place like Mayo. It sounds like you have a pretty severe illness and not receiving any treatment at the moment, so this Mayo doc is understandably concerned. I think you have nothing to lose (apart from a bit of your pride) by going to see him again. And I think there is (potentially) a lot you can gain. If he only wanted to "cover his ***" he had to contact you once or twice and then document it on your chart as "non-compliant patient". It sounds that he really cares.

Mandy, Hi. I have to tell you that I took some time to digest your post. I can hardly believe the lack of care you are facing.

First, oligoclonal banding is present in more than MS, such as Lyme disease. With your leg weakness, I'm surprised they didn't think of Guillain-Barre. MG is "usually" a head and down disease while GB is, again, "usually" a leg and up one. It progress, however, fairly rapidly.

It seems obvious that you could have more than one thing going on. Did anyone do a chest CT to look for a tumor of your thymus? Sometimes people can have a tumor that causes MG antibodies, have signs of the disease but then the tumor is removed and the MG symptoms go away. Granted, that's pretty rare but it does happen. Unlike some doctors, I don't think "rare" things should be ignored just because they aren't seen often. Striational antibodies are more associated with thymic tumors but not always.

I'm exhausted already! Okay, there's no such thing as a "minor" lab result. It's not only the absolute numbers but the trends in numbers that are important. And there's no such thing as too many details in medicine. Do you have ALL of your lab results from your hospital stay? If not, get them.

MG antibodies have shown up in "normal" people, sometimes in ALS patients (don't freak out by my saying that!) but usually in those with MG. There are MG patients who have ONLY AChR modulating antibodies. I'm one of those patients.

Prednisone can make patients worse or better and sometimes it's not because of the effect on MG. It's a complicated drug with a LOT of side effects. You do have a lot going on and you don't know for sure yet what is causing what or affecting what, unfortunately.

I am concerned about the polyuria. You should see an endocrinologist right away. Not all of your answers will be found by a neurologist! Since you do have more going on, you will need more specialists. That's a VERY important way to think. You wouldn't go to an auto mechanic to get your hair colored or a podiatrist to get a colonoscopy. Neurologists only deal with their specialty.

I am VERY concerned about your liver and kidney function. Can you ask your primary doctor to recheck all values, including a comprehensive metabolic panel and a UA with culture? Has anyone checked you for lupus? Polymyositis? And you could have diabetes, which is no small thing. Swings in sugar can do all kinds of damage to the body.

Simply because there is a lot going on does not let any of your docs off the hook. But you might want to realize that they are out of their realm! So get more doctors involved. See that guy who was recommended by Tatia. Get a endocrinologist to evaluate not only the polyuria but all endo functions. Get a look see from a rheumatologist, since this may not be MS. Work the medical system so it works for YOU!

You can have MG and MS and Lupus. No, I'm not saying that you do but I've known people with multiple immune problems. It's not fair that you have to do the work here and that no one has truly helped you yet.

If you get weaker where you can't walk, can't move, can't breathe well or have any other severe muscular weakness like not swallowing, you have to dial 911. If you have MG, it's serious. You need to let people know that you had positive MG antibodies AND the striational antibodies.

The lesion in the brain deserves a 2nd opinion. It's probably not from a B12 deficiency but a B12 def. can cause white matter lesions too. You need a brain neurologist expert to help with that.

I hope you have some support and people to take you to doctors. This can be a very exhausting process and you have to take it very easy right now. I can't tell you how sorry I am that you've had to go through this and still don't have good answers. If I haven't answered enough questions, say so. I'm not feeling too well lately and I may have missed something. Take care,

Annie

Duh, One more thing. If you still have the effects of Pred in your body or are still on it, it WILL affect an EMG or the antibody tests. If you had that high of an antibody result while on Pred, then how high would it be off of it? It's the obvious stuff that gets missed.

Alice and Annie,

Thank you both so much for your replies to this and my other post. I can't tell you how much that means to me, or how much your answers help. I'm going to read through these posts a few times to make sure I take all this advice to heart. Annie, thanks for the suggestions on labs to run and specialists to look into...i hadn't even thought of seeing an endocrinologist or a rheumatologist. I loved your comment about not seeing an auto mechanic to color my hair!...very funny, and very on point. I'll see what I can do about this.

You are both right about finding a neurologist I can trust. I had some really bad luck with my first two. I think my case is more than most docs want to take on, and it shows. In fact, I had three neurologists in the hospital tell me that they wouldn't feel qualified to follow my case. I am glad they are honest, but all of this has left me feeling like I don't have anyone watching out for me, and like I have to handle all of these disorienting details for myself.

There is good news though. I finally connected with Barrows. My referral went through and they booked me an appointment for February 8th! They said the doc is scheduled out until june but because of the severity of my case they were going to double book me for an appointment in February. So that is a relief, and my fingers are crossed that he is willing to engage with my case.

Annie, I know you had some specific questions, and I'll try to go through them tomorrow to fill in the gaps. Thank you so much for helping me. It really means so much.

hugs,

Mandy