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jcmom

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I have posted in the general forum before, but have some questions/worries about my new symptoms.

For the last 2 weeks, I have had numbness primarily on the left side of my face, which seems to go into my throat and tongue. I also get a tightening feeling, not painful but tightening (spasms?) Usually with the throat tightening I do feel like a big lump is in there and it is hard to swallow. My tongue will also contract, that also seems to be left-sided for now. With that I have had upper lip tremors when I smile. My recent trip to my neuro was pretty disappointing in terms of answers. He saw my lip tremors, said my tongue appears normal and was not fasiculating on exam, and just wants to see me back in 3 months. My guess is we are just playing the waiting game to see what else progresses. ENT visit just looked at the back of my throat and said all looks normal except a slight swelling at the base of the tongue. Normal vocal cords. I have had lots of other lower body weirdness--increase in numbness, tingling, jolt-like spasms, fasiculations and major fatigue. And yes, all of this was extrememly fast onset--only since late December 08. My EMG was clean, and we are repeating that the end of April. I have lost about 15 pounds since this started, partly from extreme anxiety, and partly because my tongue/mouth feels so funny it is hard to swallow anything but softer foods.

Any advice? My family is wanting me to try to get into a University doctor ASAP, but ASAP will mean at least a 3 month wait. Should I call and get on the list?

Bless you all!
 

Al

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Not being a doctor, this is just a guess but these symptoms for such a short time and hearing what 2 specialists have said would lead me to think it's not a serious MND. It sounds like you won't be sure until being told by an ALS specialist so I'd get the referral and if you feel better later just cancel.

AL.
 

rose

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There's nothing wrong with getting a second opinion if you feel that would give you peace of mind.

I can tell you that what you're describing does not sound like PBP to me, but of course I'm not a doctor.

I think if an unscientific census was done, we'd see that for those who feel they have a bulbar symptoms, if it turns out that they have a bulbar palsy, that it is seen right away when they get to the neuro or an ENT. They do not have normal exam findings.

Since I've participated on this forum I do not remember one single person who was diagnosed with PBP who originally had a doctor tell them that their function in that area was normal. That's just me, and I have not read extensively, but have been reading for several months now.

Just in my personal experience, my changes were so subtle that it was the exact opposite, it was the specialists telling me what was weak, I'd gotten used to much of the progression as it happened and was not consciously aware of all places that had weakness.

Hope this helps. :)
 

jcmom

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Thank you for replying--I respect both of your opinions. I realize that I have had so many symptoms in such a short time and this doesn't seem typical of ALS. Al is also right, however, that I will be worried for some time if things don't get better and will probably want a University or ALS center to look at me. :wink:

I have been under extreme stress lately since my mom was diagnosed with a grade 4 brain tumor. She and my dad are staying with us while she gets radiation. I know stress can do very weird things to the body, and I am praying every day this has a simple/treatable explanation. Again, thanks for your thoughts.
 

Jennifer51

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I agree with Rose, does not sound like the symptoms I had, (diagnosed bulbar early 08) I like Rose was not even aware of any weakness until the neuro said I had it, and even then I thought he was mad, and the tongue....both my GP and the neuro took one look at my tongue, wriggling about when pocked out...not just normal wiggles, but extremely fine wriggles all over and non stop, added to slurred speach, increased saliva and swallowing, they both siad immediatley it was bulbar and all the following tests were to confirm it...unfortunately.
 

piperanne

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I have posted in the general forum before, but have some questions/worries about my new symptoms.

For the last 2 weeks, I have had numbness primarily on the left side of my face, which seems to go into my throat and tongue. I also get a tightening feeling, not painful but tightening (spasms?) Usually with the throat tightening I do feel like a big lump is in there and it is hard to swallow. My tongue will also contract, that also seems to be left-sided for now. With that I have had upper lip tremors when I smile. My recent trip to my neuro was pretty disappointing in terms of answers. He saw my lip tremors, said my tongue appears normal and was not fasiculating on exam, and just wants to see me back in 3 months. My guess is we are just playing the waiting game to see what else progresses. ENT visit just looked at the back of my throat and said all looks normal except a slight swelling at the base of the tongue. Normal vocal cords. I have had lots of other lower body weirdness--increase in numbness, tingling, jolt-like spasms, fasiculations and major fatigue. And yes, all of this was extrememly fast onset--only since late December 08. My EMG was clean, and we are repeating that the end of April. I have lost about 15 pounds since this started, partly from extreme anxiety, and partly because my tongue/mouth feels so funny it is hard to swallow anything but softer foods.

Any advice? My family is wanting me to try to get into a University doctor ASAP, but ASAP will mean at least a 3 month wait. Should I call and get on the list?

Bless you all!

I'm having the same problem! I feel like my tongue is tightening and won't let loose though! I speak fine, but wouldn't think that I would based on this feeling. It comes and it goes. I'm scared....atleast u r not alone!
 

rose

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piperanne,

If it is any comfort, my tongue has never felt tight. I guess technically it is contracted in that I cannot stick it out, nor tent my cheeks with it, or touch my teeth beyond the front ones. I think this is what the medical description of contracted means, rather than a tight feeling, but I honestly don't know ~ I just know that I do have progressive bulbar palsy, and have never felt a lump in my throat, or my tongue feeling tight or unable to move. I doesn't have a wide range of motion, but it apparently doesn't miss it either. :) Its a happy tongue, just clueless is all.
 

Sheen

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Pbp

My mother is in the process of being diagnosed with PBP. Her symptoms started about 9 months ago when I started noticing that she is taking very long to say something in a halting way and that she was complaining of excessive mucus secretions. At first I thought something was wrong with her vocal cords and made her get a variety of tests that included MRI, EMG, ENT and blood testes. All came out normal. Her speech has gotten progressively worse in the past few months , so much so that if she talks really slow, only then can I understand her. She also gets short of breath while trying to speak. Her other complains are not being able to swish water in her mouth and her excessive salivary secretions continue. Recent (2 weeks ago) she had another set of MGs and MRI, also negative. I have read that pure PBP presentations are very rare, but do happen. But I don't know what that implies.

It is agonizing for me to see my mother go through this, and the thought That i will lose her soon is killing me. She is only 61 years old.

Are there any clinical trials out there? If any of you can shed some light on this, I will greatly appreciate it.

Thanks,
Sheen
 

greekmom

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I was also diagnosed with PBP at he age of 43. I have two children. I am now 46 and my diagnosis was recently changed to ALS. I presented the same symptoms as your mom and gradually have gotten worse overall. Everyone is different, so keep the faith
 

Sheen

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Hi Rose:
When did your symptoms start ? What ere they initially and Now how are you? Are you taking any treatment of any kind?
 

Sheen

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Hi Greekmom:
Thanks for replying. What do you mean by gotten worse overall? What are your symtoms now? Do you have any family history? Did you have any kind of stress before these symptoms started?
 

Sheen

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Piperanne and JCmom

Is Myasthenia Gravis being considered for you? Do you have any eye symptoms?
 

greekmom

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Sheen
I was completely healthy aside from a common cold once in awhile. No stress. No family history. Started with slurred speech. Speech started getting slower and slower. It was gradually getting worse over the course of year and a half. Then noticed my right hand losing muscle and strength. Now walking and balance has become somewhat hindered. Had every test under the planet all negative until recently my EMG and nerve test showed positive muscle loss in various parts of the body, hence ALS diagnosis. I take no medications at this time. My husband and kids are what keeping me going.
 

Sheen

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Ppa

Hi Greekmom:
I took my mom to University of Pennsylvania and the doctors there think she has Primary Progressive Aphasia. Now I am confused as the doctors in St. Louis said PBP.
The presentation is somewhat similar where the speech difficulty is concerned but my mother does not have any other symptoms at all.

I think only time will tell how this unfolds.

Hats Off to all of you on this forum struggling with this disease. You all are real troopers and I pray from the bottom of my heart , that they find a cure soon.

Sheen.
 
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