Thread: My Story: Pregnancy & ALS Diagnosis

[Kristina62]

Dear All, please be so kind to read my story. I copy this from ALSforums. There I was told to go to psychiatrist 'cause I am such a wreck, which I actually I did, but I am still a freak and nuts."I was pregnant with our second child (age 26), when my mother started to complain of extreme fatigue, then her walking significantly slowed down (within weeks), became shuffly and unbalanced. Then she just tripped and fell. After one year of going to the doctors, she was diagnosed with ALS (age 59). At the same time our little girl was sent for development therapies, with delayed speech development and signs of ADHD and mild autistic symptoms. I already had had a long history of anxiety, depression, panic, suicidal thoughts, but at this point, I went mad, lost all of sanity.Our world has broken.I spent long nights on the internet, looking for some hope for my mother, alternative therapies, experimental drugs, anything.Then, 5-6 weeks after my mother's diagnosis, once I woke up in the night with twitching in my neck (7months ago now!). I had a severe panic attack then. From the next day, twitching set on all over my body, but especially below the waist: feet, calves, thighs, buttocks, and also: hands, arms, shoulders, face, lips, back, everywhere.I panicked that I got the dreadful disease as well. Then I got a feeling of weakness on my left side, both hand and leg. Shakes, tremors, sense of vibrations, buzzing, something crawling in the muscles of the calves. At this point, I lost connections to my family. I became unable to take care of my children, play with them, take care of my husband, make love to him, speak to him, anything. I lost connections to all of our friends. (To make things worse, my husband has rare, uncurable, hereditary eye disease and has been legally blind for ten years and now very close to full blindness, with very little residual vision). I developed a routine of strenght self-testing, which I cannot stop, I am obsessed with that. This includes jumping, both feet and on one foot, standing on one foot, squatting, squatting on one foot, pushups, walking on toes, walking on heels, walking in a squatting position, jumping in squatting positions, gripping things, stand on hands, holding pushup position on fingers etc.I went to a neuro, but she refused to examine me, said it was nothing but most severe anxiety, and that she did not need an EMG to say I did not have ALS. She was also quilified as a psychiatrist, so prescribed me Xanax and Parexetine. I do not take these beacuse I am still nursing my son.By this time, my mother's condition quickly declined.We hired a qualified nurse for my mother, as I am a total wreck and unable to care for her.I keep on thinking 24/7 that I also have ALS, I die by age 30 and who will raise my kids.I got a new appt for the best neuro in our country, for 18th Dec. I really hope it is really just psychic problems with me, and can be cured. Please let it be not familial ALS - anyway, my mother's parents did not have ALS, lived long, 81 yrs and 83 yrs. But I do not have any more information.Sorry for this long, miserable stuff. Any positive comment would be really appreciated. Many thanks!

 

[JohnnyRocket]

First of all, I’m very sorry to hear about your mother. I cannot begin to imagine the struggle that has put you through, not to mention the rest of your family. On top of that, you’ve had other stressful events compounding your stressful situation beyond compare. Along with many of us here, these perfect storms have consequences on our bodies which sometime can lead to your symptom pattern. I want to point out some things to keep in mind:1. Everything about how your symptoms presented and progressed is perfectly explained by BFS. 2 Nothing about how your symptoms presented and progressed indicates ALS or something sinister.3. The fact that your neuro refused to examine you and sent you away is positive. She knows what is clearly apparent in your story….this is not ALS. A good neuro will not order an EMG when its clearly unnecessary as in your case.4. Your obsessive behavior with strength-testing is both harmful and NORMAL among people like us. We’ve all been down that road, so take comfort in that fact but try to break the cycle. It serves no clinical purpose (self-testing) and can only lead to feeding an unhealthy obsession. I don’t know the facts about your family history, but I do know that your symptom pattern is not something ALS produces. You don’t have ALS, plain and simple. Your neurologist agrees and so will the next one. The sooner you accept the facts, the sooner things will calm down. BFS can never harm you and can never turn into something sinister. Please take a deep breath and take comfort in the truth. 

 

[Gracer]

Hi Kristine,just would like to join our vet Johnnythejet in his words... so sorry about you mother and your overall incredibly hard situation...I also agree that your sympomes of course do not have nothing with ALS as you can see by your own mom - she had completely different symptomes - extreme fatigue, inability to walk, falling etc. but not widespread twitches like we have.As for the treatment your doctor prescribed, and considering your overall severe situation, maybe you should evaluate risks and benefits once again... Practically in your condition as you describe it, you definitely need meds as support to regain contact with the rest of the family, and, as I often say, speaking therapy would be absolutely necessary in any possible form - from church support if you are a church member till professional psychological help if that is available for you.On my point of view, it is abdolutely necessary for your to cope with your actual situation.Please have my deepest sympathies,Yulia

 

[JOHN1589KY]

From the information you provided us (and I think everyone here will agree), you have NO objective evidence of ALS. If a neurologist had the slightest inclination that something was wrong they would have ordered more testing. This is a long hard road to go down, but try to focus your thought elsewhere. Stay safe!!

 

[OptimisticGuy]

I would like to echo what everyone else has already said, I am very sorry to hear about your mothers situation and I would like to assure you that you will always get good advice, assurance and support on this forum.It's been a massive help to me and I am amazed at how many people who are over the BFS worries but they stick around to support everyone else who comes along.I would like to be one of those support members once I get fully better or at least fully better on a psychological level, I still get my ups and downs with worry and new symptoms etc like everyone else ..I will do my best as everyone else here will to help you through this difficult time.Paul

 

[EnlgishBirder]

As others have said, I too would like to say how sorry I am about your mother.I'm no doctor bit it seems like you have been under incredible stress with your family in general. To have a baby is stressful (I've had 2 and it can be very stressful). On top of this you have anxiety with your daughter and husbands health. Now your poor mother.It's not surprising that you are experiencing these twitches. Mine came on very suddenly about 9 months ago (I have health anxiety after incredible stress in my life) and I'm also an anxious person . I read about someone who had ALS and then about 2 days later the twitching started. I was convinced I had ALS and held out 7 months before paying to see an expert who told me it was not anything to do with ALS but hyper excitability of my nerves due to anxiety. It took me 2 visits to finally believe him. He was prepared to do an EMG to show me but said o didn't need it and I agreed not to for this reason. He also warned EMGS can be a can of worms and send you on other anxious trips for no reason. I think that if you have been seen by a neuro and have normal reflexes and tests you really are fine. A good expert in this disease cam spot it a mile off regardless of what you may read on the Internet.This also leads me on to dr Google. Try not to read anything on the forums - hard I know as you are researching about your mother but until you get through this you need to protect yourself and your sanity. If you are anxious come here and talk to us. It's such a helpful place and got me through my worst hours. Thinking of you x

 

[Kristina62]

Dear All, thank you for your kind reply. Since my last post, I successfully stopped crazy self-testing, and that is so good! OK, sometimes I do some jumping, but can stop, it is nothing like that crazy compulsive obsession I had felt before. At last week, I did several manual jobs around the house, preparing everything for winter and finished garden jobs, and realized I could do everything normally. I just need more time outdoors, on fresh air. This weekend I plan a 9 miles hiking. I just pm P20 who is a newbie here as well and his father has ALS. He needs support as well. Thank you again, sure I will be back.