Knowing of diagnosis

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JaimeOwl

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Learn about ALS
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I’ve posted some times ago about my symptoms. I still have no diagnosis but my symptoms became a lot worse.

So I want to ask you a question. Mostly diagnosed people.
Do you think Pals should know the diagnosis while he/she still can function like almost health person? I mean, in my case, I have a lot of weakness, breathing problems, pain, brisk reflexes, fasciculations. But I can do all things but with efforts of course.
Now I am considering the option to go to a doctor and redo EMG but it is highly possible that I receive diagnosis or will be have to have a lot of appointments to investigate it. Or I can live with some difficulties unless they become too obvious.
It is like I can have still normal life for some period and there is no treatment so the diagnosis won’t do something good or stop something.
So, can you give me your opinion. Based on your experience or just general point of view.

And another question.
I know that my family and some friends will be always by my side no matter what. But I don’t know about my boyfriend. I want to believe but I can imagine how difficult it is. But it is wrong to hide from him that something is wrong, right? I am really afraid of loosing him.

The last doctor (in fall) said that I have als syndrome. But I guess it’s the phrase when you can’t yet say the diagnosis because of lack of evidence?
 
I don’t know what als syndrome is. If you are not diagnosed with ALS there is a possibility you have something else and it could be treatable so I would want to be sure there is nothing else.

you are not in the US so some other things may not apply but here a diagnosis is needed for access to disability and medical insurance through social security. It is also needed to get into trials and for some services and equipment. The current treatments to slow progression work best earlier.

I personally would want to know what was wrong even if none of the above applied but that is an individual choice

if your symptoms don’t impact others they are your business but if you are in a relationship that is serious and he may be planning for a future that is different.
 
Doctors in Russia says that Als syndrome is the name of some non-specified disease that can mimic these symptoms but anyway they can’t find this disease. And some pals say that before actual diagnosis they received this als syndrome thing from doctors.
And in Russia we don’t have nothing but not much money from disability and the help of only ALS fund our country has.

About relationship, to be honest, I don’t know about something serious in his mind. We are living together since the second week we started dating but it is only a couple of months. I want to share with him all my fears but my family always says me that nobody wants women with illness so I am convinced in this now. I also had cancer and there were nobody near but my family.
 
Probably different, but in the US I would say try to get long term care insurance. Then live your life and do try to figure out if it’s something else more treatable too.
 
If you had a normal EMG the last time, the odds of its being ALS are pretty low, with all the problems you describe. So I would be hopeful that you might have a nagging virus like long Covid, even if you were never diagnosed, or another less serious problem.

It does not matter what your family says about what your boyfriend might or might not do; if you would feel better telling him, fear is not the best reason not to, and a relationship with secrets is not the best relationship. But "ALS syndrome" is pretty vague, so if you share that you are not feeling your best but are trying to figure it out and feel better, I don't know why that should drive him away. But if it does, that can only be his choice.

Regardless of what you decide regarding further testing right now, and it's always an option to live your life and "act as if," while you always can go back for more testing if/when you cannot perform normal activities. You can keep notes of what makes you feel better and worse, from a long walk to stretching to a healthy meal or a good night's sleep, and do what makes sense for you. Having a condition that the doctors aren't sure about does NOT mean that you cannot make it better. Indeed, you may be the only one who can.

Best,
Laurie
 
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Hello. I am 24 year old.
I had some health problems before connecting to my thyroid.
5 years ago I had cancer and left part of my thyroid was removed. Nothing serious, only on hormones all the time, no radiation. And since then I have Hashimoto disease but also no real problems because of that.

I have a lot of health problems since I caught COVID in April 2021.
To be honest, I don’t know what to do and how to help myself which is why I am asking you. Maybe you can give me an advice where to go or what diagnostics can be done.

April 2021: mild COVID
May 2021: Bell’s palsy
June 2021: brain and spine MRI clear
July 2021: general fatigue, debut of visual snow
August 2021: fasciculations, urine leakage
September 2021: clear EMG (1 hand muscle, 2 legs muscles and 1 spine muscle), increased saliva, weakness of facial muscles
from September to January my condition was quite stable
January: worsening of visual snow, increased fasciculations, fatigue in legs and difficulties with breathing when doing stairs, running etc. Symmetrical slimming of the legs. When I strain my leg, there is like a dent on each shin. (worsening by the time)
March-April: left hand and wrist pain, neck pain
May-June: pain remains, the left wrist slimmed in comparison to right one.
Also in June I had second EMG, the same muscles as the previous time. Also clear.
I have brisk reflexes confirmed by ALS doctor since october. Strength in my hands was okay during June appointment. But in october ALS doctor confirmed that my left hand and left leg have clinical weakness.

I don’t know where to go to be honest. My health is worsering every month, sometimes week. Not even one symptom became better or gone. Only remain stable or worse.

I know that you don’t like photos in this forum and I will delete it if it would be needed but please take a second to look at them.

P.S. I visited several psychologists and continue therapy, I also saw a psychotherapist and took antidepressants for almost a year with no visible effect.

Also I know that almost normal neurological exam and two clean EMGs almost always mean no ALS and I would be okay with that but my condition is very bad and I just can’t live my life like I did before. And all these symptoms (not visual ones) are so ALS-like.

I’m so tired.
 
Last edited by a moderator:
Please stay in one thread so people can see everything at once. i moved this for you
 
oh, okay!
thank you so much
 
What did your doctor say about Covid and the symptoms that came on after you had it? I ask because I have a cousin who has long Covid and he has some similar symptoms, including the Bell's Palsy.

It's so hard to have so many symptoms without an explanation but some conditions are treatable. Hashimoto's is an autoimmune condition and you're at a higher likelihood of getting another autoimmune disease that a person with no autoimmune diseases. Maybe a workup with a rheumatologist would help?

About the relationship. I agree 100% with what Laurie said.

I hope you find out what's going on and I hope it can be treated.
 
we ask you don't post photos are they are unhelpful.
I'm sorry you are going through this, but I think you need to persist with doctors, not online forums. All the best.
 
Jaime, you joined November 2021. I'm sure you have read several threads were
we have stated our position of posting pictures. No one here would affirm
atrophy of any kind from any pictures. Even a second look is meaningless too.

Work with your doctors, copy and print your third post... take it with you to
your next appointment. It will save the doctor time during the visit.

Hope you and your doctors find the path to resolve your concerns.
 
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Thank you a lot for your response!
And sorry that my answer took so long. It is because restrictions of the site.

Doctors think that may be correlation but they can’t name actual reason or prescribe medications as all of my blood works and so on is okay. But I am gradually becoming worse over the year.
To be honest I don’t actually believe in such long long Covid but who knows.

Also all of my blood works related to autoimmune diseases and rheumatoid diseases are ok but maybe I should get the appointment this rheumatologist. Thank you I will think about it as my doctors never mentioned it before.

And thanks for nice words and answer about relationship.
Have a good day 💜

I am really sorry. I wanted to delete when saw your comment but I can’t for some reason. (Mod deleted pictures for you)

Thank you.

Thank you for reply.

Yeah, I’ve read several.

Thank you for nice words ❤️
I will continue trying to find a reason and hope the treatment.
 
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