New symptoms

[qualitybabe823]

I am hoping someone can help me out with some information. I have an appointment at the Mayo Clinic in Rochester, MN with Dr Sorenson on Jan 28. I have a new symptom that has developed in the past 2 weeks. It is getting increasingly hard for me to chew food. My lower jaw gets fatigued and it seems like my tongue has a tough time moving the food around in my mouth. I have found myself staying away from food that requires allot of chewing, for instance, salads with fresh vegtables, steak, fried chicken, anything that requires chewing. I also can no longer eat popcorn, nuts, or chips, not only are they hard to chew but hard to swallow, they do not want to go down without drinking lots of fluids. I have had 2 swallow studies done as well as a nerve conduction test on my tongue and throat. Both show that I have weakening in my tongue and throat. I believe that I am having BUlbar symptoms. Can anyone out there who has Bulbar onset explain to me how it first started? How did it progress, was it rapid in nature or did it go slowly? ANy information would be extremely helpful.

[mamaoftwo]

I don't have a diagnosis of bulbar onset but I wanted to ask you whether your neuro considered myasthenia gravis. I didnt know much about it until Midnight's diagnosis 2 wks ago but since then, have read a lot. It seems that most of the weakness there starts with either eyes or bulbar issues - chewing, swallowing etc being badly affected. Try looking it up. You may find that you fit with this picture.

[patricia1]

I am hoping someone can help me out with some information. I have an appointment at the Mayo Clinic in Rochester, MN with Dr Sorenson on Jan 28. I have a new symptom that has developed in the past 2 weeks. It is getting increasingly hard for me to chew food. My lower jaw gets fatigued and it seems like my tongue has a tough time moving the food around in my mouth. I have found myself staying away from food that requires allot of chewing, for instance, salads with fresh vegtables, steak, fried chicken, anything that requires chewing. I also can no longer eat popcorn, nuts, or chips, not only are they hard to chew but hard to swallow, they do not want to go down without drinking lots of fluids. I have had 2 swallow studies done as well as a nerve conduction test on my tongue and throat. Both show that I have weakening in my tongue and throat. I believe that I am having BUlbar symptoms. Can anyone out there who has Bulbar onset explain to me how it first started? How did it progress, was it rapid in nature or did it go slowly? ANy information would be extremely helpful.

I started with slurred speech very mild then it progressed over 5 years and it been stable for 3 years. i choke on liguids I cant move my tongue side to side quickly my tongue is scalloped ,how ever i dont have aa problem chewing my problem remain in the tongue throat area and moved 2 years ago to my arms and this year to my hands It is moving quickly now after 8 years. I do have days where my ars are worse and my speech is worse and that is do from fatigue and stress so I do have good ad bad days I wish you well .Pat

[sherry0459]

Well my experince first was with speech slurring. then tongue weakness which my have went hand and hand. Now I have choking problems swallowing problems and have lost some weight. I eat and chew very slowly. The times I choke are usually on liquid or saliva. I take Rx for saliva but... it makes me cotton mouth and I tend to want to drink more. DX 04/07 Bulbar onset. So far slow onset so the DR says. When I choke I would like to tell him he needs to feel the panic and embrassment. The liquid that is still I in the mouth shoots out, with out any control. Certain areas of my mouth and tongue do not work well. Lately I have had pain and weakness in my legs, SOOO, I have wondered myself about that. When your bulbar onset becomes no longer onset? Thanks for starting this thread, I'll be watching everyone elses comments. Oh, my first problems started 1yr 1/2 before DX. I'll be watching. sherry0459

[cheryilyn]

i started with what i thought were allergies, lots of congestion and some problems swallowing pills and also some asthma like attacks in early spring 05 by the time i went to a family reunion in aug everyone thought i had a stroke, because the left side of my face had started drooping. my dr diagnosed bells palsy. over the next few months my speech started sounding differant and it was almost impossible to swallow pills by june of 06 i could no longer talk and in oct recieved a dx of bulbar onset als. now i am in a power chair my left leg is useless except for standing and right only slightly better. my arms and hands are losing strength fairly rapidly. my understanding is that my progression is average but it feels fast to me. in 2 years i have lost my ability to speak, eat and walk. well enough of that i try not to dwell on what i have lost. i wouldn't wish this disease on my worst enemy. i will pray that you have something else.

[qualitybabe823]

I have been seen by a neurologist for 2 years, it started with my legs, stiffness, hard time controlling my gait, I have to think about walking. I have foot drop in both feet and my feet used to cramp all the time. THe cramping has stopped, I have numbness on my left foot, it involves 3 out of the 5 toes. My right arm has now started acting up along with the legs, I have fasiculations all over my body, it's not constant and not painful. My throat issues started about 6 months ago, I am now having minor fasiculations in my tongue and throat. The first neurologist diagnosed me with a rare autonomal nerve disorder, he does not know what my prognosis is. He said usually you get acute attacks, triggered by stress, but mine has been going steady for over 2 years, so I don't believe that he is correct with the diagnosis. After he did the nerve conduction study on my throat and tongue, he looked puzzled. I asked him if this was part of the autonomal nerve disorder, he hesitated and said, for now we will say it is. This is why I am going to Mayo clinic. My father died of Bulbar onset ALS in 1995, he still was able to walk with assistance right up until the day he died, however, he could no longer use his arms. He refused breathing and eating assistance. He was 64 years old, we also suspect his mother may have also had ALS, but there were not enough records to get a complete picture. I am learning to live with all of the problems, I am at the point that no matter what it is, we just need to be sure the diagnosis is correct so that we can plan for our future.

[Shatzie]

I am in the process of seeking a diagnosis for some of the same bulbar symptoms you have. I have had slurred speech since July. Then I started having foot drop in October, and swallowing and chewing problems in November. I had a clean MRI, and blood tests ordered by my GP (including GM-1 and auto-immune) were negative. I am now waiting for a second round of blood tests ordered by my neuro (testing for 6 more things) and I go back Friday the 14th. Last night while I was driving to pick up my daughter from youth group at church, I tried to swallow and nothing would work. I had to try hard four times before I could. That had never happened before, swallowing has become something I have to think about, not like a reflex or something that you could do without thinking, but it was the first time my muscles just wouldn't work. Everything has been OK since then, but it did freak me out for a few minutes.

[qualitybabe823]

I understand completely. It's very frustrating, you get to the point that you just want some answers. I find that if I am tired or stressed out, my symptoms get much worse, the key is trying to put it out of your mind and relax, (yeah right). Hang in there.

[Rachel]

My mum had bulbar onset and was told she was a "typical case", whatever that is! She started having tongue problems in 2004 saying that her tongue felt too big in her mouth, but put it down to side effects for medication she was having for other ailments.

Then over the next year or so her speech became slurred. I remember one day she asked me what she sounded like to me & I said "like a deaf person". You know, like someone who has always been deaf & so their speech is very deliberate & slow?

The doctors thought she had had a few mini strokes & she had speech therapy, but that made no difference and her speech continued to deteriorate. She had difficulty swallowing, coughing, could no longer sing or shout & would choke if she laughed too hard.

After going through numerous tests she was finally diagnosed with MND in January 2007. At this stage she was still able to eat normal foods although only in puree form and she had to be so careful not to swallow the wrong way. In March she had her PEG put in & was still able to walk and talk, but by June her speech had gone completely and she started to deteriorate. After numerous choking fits over the summer which landed her in hospital for a few days each time her condition & mobility worsened dramatically, so much so that by October she was admitted to a hospice. By now the muscles to her lungs were starting to fail and my beautiful mum sadly passed away on 12th November (4 weeks ago today):(

From what I read on this forum, everyone progresses at different rates and it seems that the older you are when diagnosed, the quicker your symptoms progress. My mum was 70 when she died and fought every step of the way, but decided not to vent.

Don't know if any of this helps, my thoughts, hopes & prayers are with you. Take care

Rachel

[qualitybabe823]

Thank you for sharing that with me. I have a deep faith in the Lord that he will take care of me, no matter what. Do you know what it's like when you feel deeply that something is drastically wrong? I took care of my father who had Bulbar onset so I lived it with him, he never talked about it, he couldn't, it would cause him to break down and cry and that was not proper for a man. So we went along not really knowing what he was going through, I could tell he was having problems eating and just started naturally preparing soft foods for him. I wish now that we had talked more about it. I am scared to death. I started with my legs 2 years ago, but they seem to have stopped progressing, I walk like they have weights on them and I have foot drop on both. Then my arms and hands, they cramp, I have no strength to open things anymore and they tire easily and cramp up, but now that I started having issues with swallowing and chewing, it's like it's solidifying what I have feared all along. I will hang tight to my faith and wait until I go to the Mayo clinic in January. I am seeing the same doctor that diagnosed my father, they have all his records so if we need to look back, he has them. I am hoping for good news but prepared for the worst, just in case. I just feel in my heart that this is the beginning to my journey to the next world, however long it may be. Hopefully longer than shorter as I have allot of things I want to do yet, need to do with my life and my family.

[Midnight]

I have had many bulbar symptoms but also am having issues walking & i can hardly lift my arms up for long. I just rec'd confirmation on extensive Lyme panel & it is negative. I am heading to UCLA Thursday and am hoping they decide on MG. It'll be nice to actually find out what IS wrong with me for sure. Can you climb stairs? Is your head hard to hold up? I get fascics in my neck and it seems like it affects my swallowing, gagging, eating, choking more when fascics are ramped up. I guess one thing that is key is if you improve or continue to decline. I have a bit of a rollercoaster so that is why they think more MG although there is not much improvement there are tidbits of it here and there. I wish you the best.

[patricia1]

Iwas first dx with MG and was put on Mestinon and it didnt work. With MG you get strenght back after resting If you ly down for 10 minutes you feel stronger. My friend has it and the best test is try the mestinon it works if you have MG ARe you eyelids drooping pat

[AngelManFL]

I started having trouble swalloing, chewing and total loss of appetite, lost a lot of weight very quickly and my Dr started me on these meal replacement shakes from Isagenix - the program itself is designed for weight loss - but there is one product calles Isalean Shakes, they are designed to be complete meal replacement - for me it is full of nutrition, thick so for me it is easier to swallow. I started on one day and now drink two a day. It is my only source of food and or nutrition and has worked great for me - definitely ask your Dr first but for it is keeping my weight steady and keeping me alive and not on a tube (which fear totally!!!). the site is www.tampabay.isagenix.com (http://www.tampabay.isagenix.com) click on 'Cleanse' button and you will see the shake, for me they are keeping me at 160lbs... hope this helps, to me it is better than having a tube and has worked well, each has 23 grams of protein and all that vitamin stuff.

[qualitybabe823]

Well, my week at Mayo clinic is 1 week away and the anxiety is starting. I have good days and bad, one day I am optimistic and then I go the complete opposite direction. I now am having periods of incontinence, which is very embarrassing to say the least. I wear a pad just in case, at times, I don't even know I have to do, I will bend over or move and it leaks out. THis is a new symptom. My swallowing has gotten a little worse, and at times I have a difficult time moving food around in my mouth and enunciating certain words. I really am hoping that Mayo clinic will find what it is that is wrong so that I can work on living, instead of stressing out over WHAT IS THIS HAPPENING TO ME! Just thought I'd let off some steam, thanks for listening.

[Midnight]

Hi quality,

I am keeping my fingers crossed for you that you will get some answers and start getting better. I know the nerves get so racked before an appointment, when at the same time a week feels a million miles away. I will be sending good thoughts your way.

[CindyM]

We are always here for you, Babe. I hope you find ways to keep your mind off the upcoming appointment, and I hope they have great news for you when you get there!

[qualitybabe823]

Thank you for the kind words of encouragement. It is hard to keep it off my mind, and my job is asking questions about what I can physically do and they want answers from my doctors, which makes it much worse. I will update when I return.

[crystalkk]

quality,

I think you said you had an appoint at the mayo on the 28th, how did it go?
Did you get any good news?

[qualitybabe823]

Well, I went to Mayo clinic, I think it's the best thing I've ever done. They were very thorough. I had 5 days of intense testing. Multiple EMG's, Nerve Conduction Studies, Autonomic testing. They pulled my father's records, he had ALS, but they do not believe that it was a genetic form. They tested me for genetics, and all checked out fine. My issues are not related to ALS, but rather to balance, motor skills and sensory perception. (spacial, how I relate to what surrounds me) THese are all things controlled by the cerebellum part of the brain. My neurologist thinks that there is something that could be going on in that part of my brain. He tested me extensively for cancer, thinking that maybe I had cancer somewhere that traveled to that part of my brain. All tests came up clear, which I was elated with! They did more autonomic testing and this time, I showed improvements, my swallow is almost fully recovered, my sweat patterns are back to normal. Very good news. Right now I am diagnosed with Small Fiber Nerve Neuropathy mainly in my hands and feet. This is normally seen with people with diabetes. I am not diabetic, however, my blood sugar fasting was 126. The doctor feels if I dropped 20lbs, this may alleviate these issues. He feels also that I may have had a autoimmune disorder reacting to some virus that I may have picked up. My immune system may have started to attack my body and it may be on the mends. In the meantime, he is recommending a brain scan, concentrating on the cerebellum part of my brain. He feels that I may have lesions, or a tumor that may be causing issues. However, he feels if this is the case, that it would not be cancer after all the testing they have done. It would be something they could treat, either with surgery or medication. So this coming week, I will be going in for the brain scan, I am having it done at home, where I live and they will send the films to Mayo and my doctors there will review them and let me know what the next steps are. SO for now, I consider this fantastic news, whatever it is, my life is not ending and for the first time in 3 years, I am focusing on the positive and not the negative. Thank you to everyone for the support I have recieved, you will never know how much it has meant to know there are people out there going through similar issues and dealing with them. I will update when I know more.

[siuska]

well, that's good news! i am glad you do not have ALS...whew! i found out after second EMG, that i do not have it either! we are blessed!!

[AngelManFL]

That is so amazing - I am so happy for you!! I'll be going to back to the Mayo for the third time and I praying for the same news...

[CindyM]

Good news, Babe! We always like to hear news fo this sort around here! Now if Angel-man can only join you!!!:-D

[siuska]

i'll put the good vibes out there for you, angelman

[qualitybabe823]

Angelman, it has taken over 3 years for me to get this great news, don't give up hope, without there is nothing. My prayers are with you for good news!