[Leigh]

Hello Jeaninne, I am so sorry to hear this. I am eight yrs into a seronegative diagnosis. I have questioned my diagnosis off and on. My MD has only recently questioned it. I feel like I have a combination of MS, MG and ALS. This rare group is very frustrating. Only taking immunosuppressants is just putting a band-aid on the situation especially seeing all the new meds available in recent yrs. I have been very uncontrolled for 2 yrs. Just switched from Cellcept to Imuran with some relief. I usually continue increasing dosage until it finally doesn’t work anymore. I take 540mg Mestinon over 24hrs & I have never been able to reduce that dose. I had plans to speak to my MD about the biopsy but with med changes and questioning a diagnosis I did not rock the boat. I plan to discuss this in June as well as work on a second opinion to try to maybe repeat some testing that hasn’t been done in 8 yrs as well as new types of tests to get some kind of answers. If I were to stop all treatment, I would not be able to move at all. Please consider finding another physician. I know depending on where you live these specialists are far and few. I will post on this thread if I get any new information that could help you but it may be a few months. You can also ask about genetic testing through Athena Lab. Your MD would have to set that up. I did two different panels in two different sessions. One with blood and the other with saliva. Unfortunately my results were negative or inconclusive. They offer payment assistance with what insurance doesn’t cover. That has assisted some patients with a diagnosis of something. I wish you the best.

[Leigh]

Thank you for the information. I am not currently working so that is the problem. I will look into Alumni. I did not think of that.

[Leigh]

Thank you so much Elaine for sharing. Their website is very informational and I will be checking into it.

[Leigh]

I am curious how he is able to take vyvgart if he is seronegative. It is not approved for that diagnosis & I was told insurance would not approve.

I don’t know what other medical diagnosis he has but being seronegative myself, Not a lot of treatments work & there aren’t many to choose from.

[Leigh]

Frustration

Sadness

Pivot

[Leigh]

<p style=”text-align: left;”>I have wanted to participate as well. I have only found a walk in my area. Didn’t seem worth driving a couple hours to probably not be able to participate. I think they should have other fundraisers that actual MG patients can participate in. All of the other fundraisers I have seen have been across the country. I would also like to fundraise but I don’t have a network of friends/family.</p>

[Leigh]

Please add me to the group. Seronegative for almost 8 yrs.
Leigh K

[Leigh]

Hello Jeaninne, I am so sorry you are going through this. I was diagnosed 8yrs ago with Seronegative MG after ruling out MS. I have questioned my diagnosis off and on but only at my last appt. has my MD questioned it. I feel like I have a combination of symptoms of MG, MS and ALS. I am a very black and white person and need a concrete diagnosis although I have realized that is probably not going to happen. I have been very uncontrolled the last 2 yrs and had to stop working. I just switched from Cellcept to Imuran with a little bit of relief. Only being able to take immunosuppressants is frustrating and only putting a band-aid on the situation. I had planned to speak to my MD about this in Feb but with treatment changes and questioning a diagnosis I chose not to rock the boat but plan to in June as well as seek out a second option for any testing not done as well as possibly repeat testing done 8 yrs ago. I have spoke to people with MS not diagnosed for 10+ yrs. My MD thinks I would of had positive results 8yrs ago. I would like a scan of my neck and spine. Its possible to see it there and not just on the brain. Anyway, I would definitely seek out another physician. I know depending on where you live they are far and few. Also, ask about genetic testing through Athena. Your MD would need to set this up but results have helped some patients. Mine were negative and inconclusive so no help there! If I were to stop all treatment, I would not be able to move. I cannot believe you weren’t given an alternative or referred to another specialist. I will post on this thread about the biopsy if I find anything out about it. I wish you the best.

[Leigh]

Thank you for your reply. I was diagnosed about 8 yrs ago & diagnosed within a yr of major symptoms but looking back I had weird stuff off. & on for a couple of yrs before.  Only have 1 more treatment to try. I had reaction to Cellcept initially & stopped it but have now gone back to it & just started on the highest dose. I am the worse I have ever been. Going to see how I do & finally work in a second opinion. I have had to stop working & have lost all control in my life the last yr. I am praying your husband finds some relief & for you as well. This affects the whole family.