Help needed

[healthproblems1]

Hi! At this point I am not sure where to turn apart from this community. I just turned 25 last month and am a female. Since July I have been having some very concerning symptoms. I have had 3 MRIs, hundreds of blood tests, an EEG, a lumbar puncture, and as of Monday, an EMG.

The only things showing anything are a relatively high platelet count, a high c reactive protein, and an EEG that showed slowing on one side. I have been having constant severe and violent muscle spasms and twitching since July that gets worse at rest. I have also had severe muscle cramping, and many tongue and mouth problems. The mouth and tongue problems are no longer as bad, but for two months my tongue felt swollen on and off like there was something stuck under it or like it was sticking out and I had to constantly suck on ice and cough drops or else it was unbearable. I would also have tingling feelings on my tongue, a feeling of roughness inside the cheeks of my mouth, and bumpy feelings on the roof of my mouth. For a few weeks now I've had feelings of heaviness above and below my eyes that has spread further down and seems to get worse. I have also had some weakness in one of my hands.

My emg was normal but I have heard that bulbar onset ALS can cause normal EMGs. Additionally, early on in my symptoms I had severe arm weakness that went away. I also could not move the lower half of my face to smile or chew for about three days but that went away. I had a period of two weeks as well where I could barely breathe but that disappeared too. My voice is very nasal and has been for the past two weeks. I also lost about 30 pounds in the first two months of symptoms. I'm at a loss as to what I should do and I am extremely concerned about it being ALS as mostly everything else possible has been ruled out. My neurologist told me I definitely do not have ALS after the EMG and w physical exam but does not specialize in neuromuscular so I feel I should get a second opinion. Any advice would be GREATLY appreciated. Thank you so much.

 

[Nikki J]

So far you have seen one doctor who has ordered all those tests? A second opinion is not unreasonable if so but I absolutely would not focus on ALS. The correct approach is to find a neurologist who os a good diagnostician - perhaps at a university level medical center and ask what is wrong with me. Trying to point a doctor in a particular direction will delay getting to the root of your problems

 

[healthproblems1]

I've seen two neurologists both at the same practice, a rheumatologist, a urologist (as I had blood in my urine a couple of times), and a hematologist because of my platelets. All of this doctors have been at the same hospital so I'm looking into finding a second opinion. I'm just terribly concerned it is als and that it will keep progressing.

 

[lgelb]

It is not true that bulbar ALS is less likely to cause EMG abnormalities. Nor is come-and-go weakness characteristic of ALS. As Nikki says, follow out the diagnostic process, which I expect to be reassuring as regards ALS. Did you mean to type that the EEG showed "slowing on one side?"

 

[affected]

No way will we argue against these doctors that have examined you clinically and had tests conducted.
You need to find a doctor you trus, not to the internet, especially as you are not willing to believe the test results.
I truly wish you the best.
Discussing non ALS medical things here is not wise as you need to work through this with a doctor.

 

[healthproblems1]

I do appreciate the well wishes. Just have been getting more scared as symptoms seem to get worse. My voice keeps getting more nasal. Additionally the weakness in my face has spread downwards but seems to come and go throughout the day and depending on the day. For example had extreme heaviness in eyes for days then it seemed to go away or became barely noticeable. Gets worse with exhaustion and overuse. Twitching and spasms are horrible and happen whenever im at rest. My tongue has alternated between severe burning and feeling swollen. Planning to see a neuromuscular Dr as my symptoms resemble either ALS or myasthenia gravis.. I appreciate everyone's input here and will try to rest assured that EMG most likely would have caught ALS since I have had symptoms since July.

 

[Bestfriends14]

Your symptoms don't resemble ALS in the tiniest bit, so I'd forget about fixating on this particular disease. Be open to finding our what IS going on and stop focusing on diseases you know nothing about. That will muddy the waters and waste time trying to find out what is going on with you.

Best of luck to you and hope you get an answer soon.

 

[Clearwater AL]

Healthproblems, you're planning to see a Neuromuscular Dr. and you don't know for sure he/she will
schedule another EMG. You've had one that was normal.

But... there is no reason to post anymore until you've seen the Neuromuscular Dr. because there is really
nothing more we can help you with or new symptoms you may feel have developed.

Do schedule that appointment.

 

[healthproblems1]

Thank you. I will stop posting now. I do appreciate all of the replies. I did have an EMG on arm/hand and leg/foot that was normal so I know I should probably stop worrying so much about ALS specifically.

 

[affected]

As well as not posting further, you would do well to actually log off from here and work on things that improve your health and wellbeing. We truly do not see ALS, so work closely with your doctors and I wish you health and a long life.