Fluctuating symptoms

[ella]

Hi,
I am new here. So far I have no diagnosis but more and more (benign) things are being ruled out. I have had some weakness in l leg for 3 years, now also l arm, wrist and neck as well as swallowing. I saw one Neuro 3 years ago who thought I had MS but MRI's have been negative. Tensilon test for MG was also negative. There are some fascilations (spelling?) moving around, I have some every day but they don't interfere with any function. Worst is the neck weakness, I now have to wear a soft neck brace when driving to keep my head from tipping on acceleration or braking.
Swallowing is becomming more difficult chunky foods make me choke, it feels like my tongue does not move up and back on swallow. I had a fluroscopy and the base of my tongue is apparently weak. There is hyperrefflexia with clonus in my left leg, just hyper on right. I also have some atrophy, about an inch in left calf, my left hand looks sorta wrinkly, the pads are smaller.
My neuro has referred me to the local University Hospital who informed me there is a 4 month wait to go on the cancellation list. We'll call you don't call us sort of thing.
I care for my 13y.old son who is a spastic quad. The moment I mention that to any doctor they look at me and say "You must be experiencing alot of stress." No kidding- but it did not cause these symptoms! Here are my questions: Do people experience their symptoms the same all the time or do you have better/worse days. Anybody have tremor in their neck/torso- I have this little rocking type movement that occurs when I am tired. It makes me very selfconsious since it is noticable to the keen observer. What to do, where to go? Thanks

 

[Al]

Hi Ella. Welcome to the forum but sorry you are having new problems and have to be here. You don't say where you live but is there another ALC Clinic that may be a bit further but has a shorter waiting list? I'm not suggesting that you may have ALS but the clinics specialize in most Motor Neuron Diseases and see more so are a better place to go if your neuro thinks you have neurological problems and it's not MS or MG. As for the good days and bad days most of us will agree that is how it generally works. Some will even feel good for weeks and months and then slide down again. Hope we can give you useful information and advice.
AL.

 

[ella]

ella again

Thanks Al.
I live in the SF bay area California. Stanford University Hospital is what I am waiting for. There is also UCSF just a falf hour further. Maybe I should call there. ella

 

[quadbliss]

Hi Ella,

There is also an MDA registered ALS clinic in SF called Forbes Norris.

Mike

 

[ella]

thank you

Thank you for that information. The whole process of diagnosis is very frustrating. I don't want to dismiss my Neuro's expertise but my sense of urgency seems to be much greater than his/hers. My husband thinks I should just go to an ER but I don't think that is a solution. Besides, I am a nurse and I do believe you should not go to an ER unless you are in danger of loosing life or limb.
My symptoms have been more or less waxing and waning (sometimes I think there was new stuff that I just got used to) until about 4 month ago when I started to have more and more persistent problems. Now I have trouble walking at the end of the day, cutting an onion, holding my head etc. Very, very frustrating. Since my previous course was rather subtle everyone seems to be fixated on that. But I have some real problems now! I guess I have to be patient.

 

[ltr]

Hi Ella,

Our rocky course sounds somewhat similar. I began 15 months ago and the doctors thought it was MS, though MRI was negative. I now have hyperreflexia in my right leg with clonus and decreased muscle strength. My small team of doctors have not shared my sense of urgency whatsoever and, in fact, have kind of blown me off! When the twitching began the neuro nurse practitioner decided I have fibromyalgia. Thanks to the people on this forum I now have an appt at a real neuro clinic. I have had periods of a couple weeks at a time where I haven't experienced any symptoms. During that time I would forget I was ever sick and become elated, overworking trying to make up for everything I hadn't been doing. Then, kabam, it hits me back, only with something new added to it. When this first started I would visit the ER with symptoms of shortness of breath, weakness, tremors. As you probably know, they did full workups of blood work and imaging and then said I need a full neuro workup. I know how you feel about the ER, I used to be a paramedic and worked in the hospital for many years. Sometimes though, you meet an ER doc who really does a workup and gets to the bottom of things better than a primary doc. Maybe you can try calling the MDA like I did. They got me an appt. within a week, whereas I was waiting 2 months and without ins. before. I hope the best for you! Leslie