Symptoms started with dizziness

Status
Not open for further replies.

Lennon

New member
Joined
Oct 8, 2019
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Los Angeles
I wanted to thank all of you who patiently answer desperate people in this forum, especially the ones who are affected. I'm 29 years old, and I've read the links that you recommend people to read before posting here. I also know the odds are small for someone of my age to get MND, but some young people prove odds are not to be trusted. I could be one.

In September 2018, I tried magic mushrooms without knowing their effect. I took some and I smoked marijuana after it and I had an intense bad trip. Days later, I noticed that experience extremely changed my attitude and I wasn't the person that I used to be. I was so positive, loving, caring, and extrovert. That experience basically changed my life.
-Around February 2019, I started to experience constant eyelid twitch on both eyes that went away around April. I knew nothing about MND.
-Around July, I was behind my desk at work, and all of a sudden, all I experienced weird vertigo along with dizziness. I thought it's probably nothing serious, and then a week later, I had a 24/7 vertigo along with fatigue. Before this, I was okay with 6 hours of sleep, but now I had to sleep at least for 8 hours to be able to concentrate and understand. I knew nothing about MND.
-In August, while I was eating dinner, I felt a strong sense of vertigo and went to ER. ER doctor said it's 99.9999% Benign Positional Vertigo. Drew blood, and everything returned normal. I knew nothing about MND.
-At this point, my body started sporadically twitch, spastic muscles were preventing me from sleeping, I was stiff, and the only way I could sleep was taking Ibuprofen.
-I saw my PCP in August, and he referred me for an MRI. MRI came back normal. He also referred me to see a neuro. I started to learn that there are types of diseases called MND, but I was sure it couldn't be me.
-I saw neuro in September, and he ordered blood work for vitamin B, rheumatoid factor, ANA screen, lead poisoning. Everything normal.
-The twitches started to hit my tongue, eyelids, throat, and rest of my face. Also, I cough and have to clear my throat when I want to talk. When I'm exhausted, I have to put effort into pronouncing words that have L or R, or P or B. I play guitar, and I also sing. My singing is not what it use to be, and when I sing bass, my voice shakes a lot, and it doesn't have the same strength as two months ago. Also, I carried a box of tissue from my car to our door, and my right bicep was shaking crazy 5 minutes after putting down the box.
-I saw another neuro, and he spent an hour and a half examining me. He checked my hand strength. Right hand 74 and left hand 69. All reflexes were normal. I failed the memory test, though. He checked my tongue and saw fasciculations, and he was concerned. He said it's most probably BFS, but he is concerned about my tongue twitch, and when I asked him about my voice problem and coughing, he seemed not to have an answer for it. My left shoulder, bicep, thigh, and calf is slightly smaller than the right. I measured it. He ordered EMG on the left side, and I'm waiting to get confirmation from my insurance to get an appointment.

At first, I thought YOPD and ALS were not a possibility, but when I asked the neuro(which was highly skilled in movement disorders) that is there any other possibility other than ALS or BFS, he said it's highly unlikely.

Two months ago, ALS was so far in my mind, but now it's a possibility, according to the neurologist. And honestly, deep down, I feel I have some motor neuron disease. Is there anyone who had similar symptoms with what I described? Can psychedelics cause MND?

I also forgot to add that all of these symptoms started after I started to work out in April after a long gap and I was working out intensely. I started working out for two months with plenty of protein consumption and then I stopped working out and 2 weeks after that all these symptoms showed up.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,319
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Please read here:

It covers much of what you report and provides some advice on what ALS is- in particular, read the short paragraph titled Symptoms, as it has an important question for you.

You list sensory issues, vertigo, dizziness, shaking, facial twitches and the like. You also state drug use- not just one type- and a resulting mood change. This is not how ALS presents itself. I am hoping you have spoken to the doctors about what you feel may have precipitated your symptoms (hallucinogens, stopping exercise) as this is important information for them to have. This will not cause anyone to dismiss your concerns, but provide medical professionals with the whole picture and allow them to make properly informed medical decisions about what possible tests to order or direction to look for more answers.

All the best
 

Lennon

New member
Joined
Oct 8, 2019
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Los Angeles
" You also state drug use- not just one type- and a resulting mood change. This is not how ALS presents itself."
I didn't mean that mood change is an MND symptom. I thought it's good to give you guys a timeline. Some people with MND here in this forum stated that they had vertigo and dizziness. I guess this type of disease is still a big mystery to everyone.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
8,886
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
There is no P/CALS reading your account who is going to think you might have ALS, and it's no "mystery" why. Your issues and history don't fit.

As for a doc unwilling to rule out ALS, it's also possible the sun could rise in the west tomorrow, but it's not the way to bet, fortunately for you. I'm sure the EMG will help reassure you in that regard. And, of course, much progress has been made in Parkinson's.

Best,
Laurie
 

Lennon

New member
Joined
Oct 8, 2019
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Los Angeles
There is no P/CALS reading your account who is going to think you might have ALS, and it's no "mystery" why. Your issues and history don't fit.

As for a doc unwilling to rule out ALS, it's also possible the sun could rise in the west tomorrow, but it's not the way to bet, fortunately for you. I'm sure the EMG will help reassure you in that regard. And, of course, much progress has been made in Parkinson's.

Best,
Laurie
Thanks for taking time responding to my post.
 

Lennon

New member
Joined
Oct 8, 2019
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Los Angeles
Hi,

I just had my emg with a neuromuscular specialist on December 5th. I had brisk reflex in both knees which concerns me. I’m attaching my results to this post and any input is appreciated. My tongue twitches has developed to the whole surface and my voice is usually nasal these days and every body notices that. Also, my soft pallet and uvula is much weaker. I’m afraid that I’m another case like Kristina1.
 

Attachments

  • 22BC34EB-B809-458A-9318-33E409CBB30E.jpeg
    22BC34EB-B809-458A-9318-33E409CBB30E.jpeg
    734.3 KB · Views: 100
  • 3BE43FBC-DD78-4BC8-86E7-4016D51BB2B0.jpeg
    3BE43FBC-DD78-4BC8-86E7-4016D51BB2B0.jpeg
    584.9 KB · Views: 111
  • 384B82B7-5E52-4682-BB36-A4FB31AF90D8.jpeg
    384B82B7-5E52-4682-BB36-A4FB31AF90D8.jpeg
    865 KB · Views: 95

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,355
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
No you are not like Kristina. Her initial emg was decidedly abnormal and she was rapidly referred for more testing and to the ALS clinic for formal diagnosis. by the time she saw a neurologist it was to be diagnosed. We were worried about her from day one though we hoped for the best.

brisk reflexes bilaterally are a normal variant and are exacerbated by anxiety with which I see you are diagnosed

your emg and the neuromuscular specialist say no ALS. Be happy
 

Lennon

New member
Joined
Oct 8, 2019
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Los Angeles
No you are not like Kristina. Her initial emg was decidedly abnormal and she was rapidly referred for more testing and to the ALS clinic for formal diagnosis. by the time she saw a neurologist it was to be diagnosed. We were worried about her from day one though we hoped for the best.

brisk reflexes bilaterally are a normal variant and are exacerbated by anxiety with which I see you are diagnosed

your emg and the neuromuscular specialist say no ALS. Be happy
Thanks for a fast response.
 

KarenNWendyn

Moderator
Forum Supporter
Joined
Jul 29, 2017
Messages
3,762
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Your EMG is as clean as a whistle. You’re cleared of ALS. Be grateful.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
8,886
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
The doc who wrote that report has on-point credentials and her plan seems good. Do try the drugs she suggests and other therapy as well, and I'd expect you to feel much better.

Best,
Laurie
 

Lennon

New member
Joined
Oct 8, 2019
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Los Angeles
Thank you all. Hope for a world without incurable diseases.
 
Status
Not open for further replies.
Top