Neurologist - 1 says als and 1 says no way

[jdever9]

Most confusing In Nov I started missing my mouth when I ate, then couldn't lift milk carton and by Dec I could not reach garage opener- had to move it to left side- Fam Dr says its a frozen shoulder and that we should get an MRI of my head and emg on right arm. Scan shows nothing, emg showed a lesion on my brachical lexus

After the report my fam Dr sent me to another Neurologist who had more emgs for the 4 lims and back and neck even my tongue

The report said electro evidence for anteriior horn cell disease based on widespread deinnervation in 3 limbs and paraspinal muscles. Right median neurology at wrist , dymyelinating, sensory mild. No convincing electrodiagnostic evidence for cervical radicylopathics, brachial plexopathies or myopathy.


When I returned to th neurologist, said that sometimes everthing else is ruled out and now, the only thing left it ALS. He gave me maybe 2-3 years. He referred to the local MDA clinic and left.

So I went home and told my husband who to this day does not believe I have ALS

MDA put me O2 at night and gave me a filled out and signed application for a disabled parking pass.


So now I wait - I can't get into Mayo for 3 months, but am going the NWMemorial in Chicago the end of April.

Yes I know, one day at a time, the nerves are getting the best of me and I decided at the very beginning, I was not going to cry or say WHY ME. The nurse at the Fam Dr office reminded me that God wouldn't throw anything at me, unless he knew I could handle it. So I sure hope He knows a lot more than I do if He continues to throw stuff at me! ( Should I have said SHE?) thanks for listening

janelle

 

[Ms. Pie]

One of your doctors surely can call the clinic and expidite your appointment at Mayo can't they? What are they going to do at your appointment in April? I'm sorry you have cause to be here and I pray your husband and you are right that you don't have ALS. Keep us posted Dear!

 

[jdever9]

Next opening May 23 - I have called every week to see if there are any cancellations ALS drs have new pts only on Thursdays So the 19th is not that far away - have lost use of right arm - right still working to a degree and left starting, at least I can still eat finger food ! thanks

 

[Ms. Pie]

Sounds like me. Try not to lose any weight Janelle! Eat high caloric stuff. Keep your strength up! And your chin too!

 

[jdever9]

Already lost 20 pounds since Dec I had copies of all my tests sent to Northwestern, so don't know if or what tests I will have to take or retake9 (No tongue this time, it was the only one that really really hurt!) Right arm much small than left, like major At least my kindle works with only a finger right! again thanks

 

[HelenL]

Sorry that you had to find us here... are there any ALS clinics near you? Since you have an official diagnosis, you should be able to get into one and get it verified... or not. I know I kept hoping they'd kick me out, but alas, they keep having me going.

And btw, it's ok to cry and say why me? It's ok to lament what you're losing... we all go through it, and once we're done crying all day, we get up and deal with it all... choosing to live with ALS, not dying from it.

Good luck, and get your doc to kick some butt!

 

[michelleRN]

Try contacting the social worker for your local ALSA chapter. We contacted ours after my first diagnosis and she was able to pull strings at get me earlier appointments for 2nd opinions at 2 different specialty clinics. Worth a shot. They usually have good connections.

 

[cervus]

Sorry about your diagnosis. Usually O2 (solely) isn't prescribed for ALS. That's a bit odd. Take care of yourself. Yasmin.

 

[Anja]

Take care janelle, so sorry to hrar about your diagnoses, feel free to share, it is good for you to express emotions, you don't need to act strong.

Anja

 

[jdever9]

Thanks all for your encouragement apparently I also have sleep apnea - drop to 65 at night ? I never could find the ranges and their meaning, so I thought Maybe i don't want to know - Tried to cook thanks for frozen biscuits Let Don make to the coffee I can't lift the pot more Anyway At least I can still use a stove and microwave thanks all janelle

 

[momap53]

Welcome aboard Janelle! So sorry about your DX. Waiting around is so very hard. Things will be much easier once you're settled into a Clinic.
I've found that the frozen biscuits are better than the ones I made from scratch, just never developed "the hand" that Grandma and Mom had. I have weakness in my R hand now as well as my legs so have turned the cooking over to my CALS. Lucy me, she's a good won.

 

[glupavomomiche]

Janelle,

I am so sorry you have received this diagnosis.

Second opinions (and if you're like me, third and fourths) are a good idea. I didn't believe it the first few times either. I know the clinic is very well known at Northwestern, with Drs. Sufit and Siddique there and all, but let me share with you my experience. I had a horrible time dealing with doctors at Methodist and Baylor in Houston, which are two of the biggest and most respected ALS clinics. I didn't have trouble getting in, but it's just insanity with those clinics. When we tried the Dallas clinic, they gave me an appointment that was 4 1/2 months away! So my GP kept trying and finally found a doctor that would see me within a few weeks. The result is I now go to a smaller but equally excellent clinic in San Antonio, even though it is many extra hours of driving. So don't think that Northwestern is your only option... get your GP to send your charts with a request for a neuromuscular consultation specifically for ALS to other places, like University of Chicago (they have an ALSA clinic, you don't have to go the MDA route)... don't send things or call yourself, as most offices will put you off since there is not a referring physician. As for Mayo... be prepared that they start each case cold. They will not want any of your old charts and they will do every single test all over again... so you need to decide if you (and your insurance company) are ok with that. I hope some of this is helpful.

Hang in there... we've all been through the limbo you're in and we can tell you it DOES GET BETTER! Just try to be calm and patient (I know, impossible). We're here for you!

~ Sarah

 

[jdever9]

Wow thanks Sarah
My appt is with Dr. Sufit I called to make sure all paperwork in order, and to see if there had been any cancellation and the lady on the phone reassured me that Dr Sufit was really great - I followed up on insurance and records because my gp ( who had referred me to him) and the mda group have records in several places and I had signed releases forms till my hands got tired and i am not one to wait until last minute. I am always early for almost everything. So If you know of Dr Sufit, I feel better.

18 days and counting. We are going up the day before to Chicago, just scout out the area and make sure we don't get lost - Bad experience at Barnes in St. Louis last year, which is closer than Chgo. Besides I have list of resteraunts I wish to finally try. My nephew is a chef in NY city and gave a list of places to check out for him. (yeah right like raw fish - NOT - I like all my food cooked)

Its great to meet you and all the others on the forum. Unfortunately I anticipate getting to know you all quite well. Have a great day Nell

 

[Ms. Pie]

Welcome Nell. Keep us posted Dear!

 

[Anja]

How are you today Nell? Take care! Waiting is hard! But you can do it!