Looking for advice and HOPE

[JenAL]

Hello,
Thank you all for taking your time and reading this.

I did read all the "stickies" I could find- and I have been seeing my neurologist (for about 2 months straight since this episode started) I saw him for migraines "before."

I was teaching highschool chemistry and physics- and in January noticed that it was getting really hard to climb the stairs to my classroom and also I had a tendon injury- so I got a brace and kept teaching for a while.

Then at the end of January I came down with something- never been exactly diagnosed- but it was definitely a lung episode where I couldn't breathe (I did have childhood asthma) and I went to my family doctor (twice.) Then over the weekend I couldn't pee and after a while I was also losing movement in my legs.....

So after fighting with ER doctors two separate times(the hospitals are very overcrowded here especially on weekends) I did get admitted to the hospital and stayed inpatient for 8 days- my neurologist ran many tests- including a 2 hr MRI with and without contrast, I think he believed I had MS at the time (although he was saying perhaps the symptoms would resolve)

Then I went home from the hospital on home health care because I was almost bed ridden- and needed help with meds and home OT/PT. A week later I ended up back in a different ER (we gave up on the very crowded one where my neurologist practices) 3 separate times because I couldn't breathe- I saw a pulmonologist who has been very helpful-

He didn't think I had "typical asthma" but since I did have childhood asthma that might be it? I was also in the other hospital for 24 hours... but they don't keep you here unless you are literally dying because there just aren't enough beds.

OK- then on another note I have had feminine bleeding issues for a long time and I am also pretty anemic- no one knows if this is related to the neurologic stuff or the female stuff. My gyn wants to do a hysterectomy but I am somewhat unsure because I don't have a diagnosis yet on the neurology. The hysterectomy has been scheduled twice so far, but I can always cancel again.... I'd rather do it sooner in case someone else needs the surgeon.

Then I saw my neurologist yesterday to discuss the results of my lumber puncture- which he was actually hoping at this point would say "MS" but it didn't. No protein bands, no nothing. It was clean. So he thinks I have something rarer- a motor neuron disease probably? He has me scheduled for a NCV/EMG and there is also BLE on the prescription (but I don't know if that is something....) he did mention that this test would be followed by a muscle biopsy most likely.

I also know that he has seen something in the bloodwork my rhematologist did that showed muscle wasting- and also that my greatest weakness is in my pelvic and core muscles not in my legs and arms although they are weak also. My PT said that my pelvic and core muscles are so weak she thought perhaps I needed to come to terms with not driving

Also, I use a walker to get around now, can't talk very clearly although I can understand myself (And others can if they are patient) and I am quite lonely- I have worked since I was about 16 years old- and raised my son (with my husband) and kept my house so this very shocking. Just to add insult to injury in AL where I live you can be fired, by law, for not returning to work due to illness. So I don't have a job anymore.

Thanks for listening- it did help to type all this out. And, I hope you all have a great day. :razz:

 

[FSHolbrook]

Hi Jen,
I am so sorry that you find yourself here. I will include you on my prayer list and know that we are here to help and support folks like you. Please keep us updated on your EMG.

Rick

 

[Nikki J]

Hi Jen I too am sorry for you having to find us. Hope the answer is something else for sure. The BLE on your prescription is probably bilateral lower extremities. You might want to doublecheck on that prior to visit with the ordering physician that they do not want to include anything else if you are having torso weakness.
My sister who has ALS had irregular and heavy periods which were a nightmare to manage. She had an ablation. Not sure if that would be option for you
Keep us updated. I too will be praying for you

 

[JenAL]

Rick and Nikki,

Thank you so much for the replies- I am really hoping that I can avoid this diagnosis 8) I REALLY appreciate the prayers- that is what gets me through the day right now.

I will update you all about the results of the EMG- and I did tell my neurologist about the torso weakness- that is why he is sending me to a specialist (and why he checked the muscle numbers in the 1st place, I think he forgot about those tests I have had SO many...)

Do you think I should call his nurse and ask about the torso specifically? Their office is quite difficult... the nurse has a secretary but I do have time to sit on hold.

Nikki- thanks for the advice on the ablation, actually I had considered that and almost went with it, but uterine cancer runs in my family (so I was a little worried) however maybe I need to give it another look. It is much less invasive than the abdominal hysterectomy I am scheduled for.

I will keep you all and everyone on this site in my prayers- ALS has always been one of my concerns- not personally but because of Stephen Hawking and the fact that I teach physics- he is such an interesting person.

 

[Kosmoskatten]

Heavy periods can lead to iron deficiency, which if very severe can give weakness and brain fog/communication issues. It can also give shortness of breath. But I am sure your doctor has followed up on this.

I hope your EMG turns out in the clear, and good that you are having a muscle biopsy to rule out glycogen storage diseases and similar.

 

[Nikki J]

If your neuro is aware of all your issues then I would leave it alone. If you have symptoms in your legs then if there is a lmn issue it will show on emg. I can understand your concern re the cancer issue You can better decide when you know what is going on neurologically. Good luck. Hope the emg is soon!

 

[JenAL]

The EMG is 3/28 and I see the neurological specialist on 3/25 so hopefully I will have some answers soon.

Thanks for all the helpful comments. I can always put off the hysterectomy for a little longer- I am taking iron supplements and an enriched diet, but need to stop bleeding.

 

[Janie H]

Hope you get your answers, not knowing is the worst, you are in my prayers.

 

[JenAL]

I am sorry it has been so long since I have posted. Only, there has been NO good news, only more doctor appointments, more and worse symptoms, no drugs that work.... horror in my opinion. :sad:

I had the NCV soon after my last post, which by the way was painful, and showed normal nerve function- however the EMG that followed it almost immediately and was done by my neurologist himself showed severe muscle wasting- very severe. In many cases I couldn't move the muscle he was asking me to without his help enough to trigger a response at all. And yet, I could feel those needles. Tears and blood.

So, he sent me to a young, very young, specialist, who was very unkind- to the point of me crying in his office and him talking to my aunt and husband over me. I was crying because of his diagnosis, by the way.

However, I was not comfortable at all with his answer so I sought the advice of a trusted doctor- who told me many reasons I DID NOT have what he had diagnosed me with and in fact it was outside his specialty. Sigh.

And, now yesterday, I went to my trusted eye doctor who my whole family sees, who knows us all, and couldn't believe what had happened to me on a personal level in 4.5 short months... because the muscles in MY EYES are also failing. That's why I can't see. He did 3 hours of tests. It's not the nerves, they are fine. It is the muscles.

I am SO sad. This is SO hard. The font on my computer screen is SO large and I can BARELY read it. I am LOST and LONELY.

The last 3 doctors who know me well? Have told me personally as a favor to them, because they like our family.... leave our town NOW and go toNew Orleans. Today.

Please. We can afford it. Fortunately, and I can barely ride in a car.

What should we do?

:-(