29 & Undiagnosed

[ab91]

Hello, I'm 29 around three years again I started having problems with my balance. Legs kept getting worse having to walk with mobility aid, such as a cane when walking long distance.

Around this time last year I started having dysphagia, early this year it got so bad started having choking epsodes. Went to hospital had barium study and upper endoscopy, they saw nothing physically wrong. I pretty mich live off ensure and protein shakes. Earlier this year I lost 40lbs in less than two months, doctors thought this was a great thing because I was obese even though I tell them I'm very weak. I've been able to keep it steady at about 185-195ibs last five months. I'm 5'2.

I noticed around the time I started having swallowing problem, I started having breathing problems. I noticed using my CPAP (diagnosed with sleep apnea 6 years ago) during the day it helps alot.

I have tongue fasciculations, it looks like I have worms crawling under my tongue. It's very difficult for me to talk and breath at the same time. My voice sounds very strained and low.

I haven't worked since April mostly because balance and breathing problems.

I have no insurance, I use public city clinic (which is free health care). I kept telling the doctor about my weakness and breathing problems. They don't seem concerned or care much about my swallowing problem. They agreed to do an emg, but it's not until this upcoming April.

I have no family history of MND or neurological issues. I'm at a loss on what to do because I get no benefits or income help. And my savings is going to be depleted soon.

[matthew55]

Welcome to our band of brothers and sisters. Stay. strong and ask anything. 🙂x

[MNDConnect]

Dear Ab91,

Thank you for your message.

I am very sorry to hear that you are experiencing many problems including poor mobility, swallowing difficulties, as well as problems with your breathing, but your doctors are not being very sympathetic to your progressing symptoms.

Although I see that you have been referred for several tests mainly for your swallowing difficulties, however, if your symptoms are being caused because you have a neurological condition you would need to have tests such as an EMG to determine if the cause of your symptoms is indeed neurological in origin.

An EMG will measure electrical activity in a muscle and will show if there is an interruption to nerve signals reaching your muscles. This result alongside the progression of your symptoms may be enough for the doctors to make a diagnosis.

Of course, it may not be MND that is causing you to have all these symptoms but again the results from an EMG, may give the doctors an indication of what the problem is or is not.

As April is quite some time away are your doctors not able to push your appointment through as urgent? Have you discussed with them the possibility of your symptoms being the result of a neurological problem?

Do you think it would help if you gave them information on MND, which may help them to make the association between your symptoms and a condition like MND?

You can download much of our information from our website: www.mndassociation.org Our Red flag diagnostic tool, see link below, is a document we send to doctors to highlight the symptoms of MND. Could you download this and give to your doctors?

https://www.mndassociation.org/profe...iagnosis-tool/

I understand from your message that you do not live in the United Kingdom, if you are in the US, you may wish to contact an association based in your country as they may be able to give you information on how to expedite the relevant tests. There are also support organisations in other countries as well.

If the go to the link below, this will take you to the website of the International MND Alliance, here you can search for support in your country.
https://www.alsmndalliance.org/find-...d-association/
If you have any questions please do message us and I hope you get some answers very soon.

With kind regards
Jacqui Anderson
Senior MND Connect Adviser.

[jd58]

Yea contact your gp to refer you to a neurologist and contact social services for help around the house and your local mnd association and claim pip Disabilty paymentsxx

[GaryM]

Yea contact your gp to refer you to a neurologist and contact social services for help around the house and your local mnd association and claim pip Disabilty paymentsxx

I think the OP might be in the States.

[matthew55]

Sorry for going on but if you have ever paid into a work pension and get a DS1500 then you may be able to take the full pot tax free. 😁x

[Ellie]

The person is in the US, not the UK.

[Lynne K]

Ab91, I’m sorry about your worryingly symptoms. You definitely need to see a neurologist but I don’t know how you can do so in the US without having insurance. MND Connect sent you good advice. I hope that you get somewhere after exploring the site that was recommended. Take care, Lynne

[ab91]

Hello, thanks for replies. Is quote considered reply? Not used to this site yet. Yes I'm in USA. Don't qualify for disability or unemployment. I believe I have to get a diagnosis to qualify for any health benefits.

[ab91]

Is there a section for 40 and under on this forum?

[jd58]

There also an ALS forum based in the USA

[matthew55]

Is there a section for 40 and under on this forum?

But ageist for this forum no? 😉🙂x

[Ellie]

Is there a section for 40 and under on this forum?

You haven't been diagnosed with an MND.

There are health forums and groups for different age groups, yes, seek them out if you think they'd help..

[Ellie]

There also an ALS forum based in the USA

OP has been there, done that...

[ab91]

But ageist for this forum no? 😉🙂x

I'm sorry, I didn't mean any ill intent. It just seems people of a certain age have a different path and more difficulty getting diagnosed because doctors don't believe them or at stubborn. As a black women, I've delt with this many times with other medical issues. But I'm not here for politics. Have a nice day.