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wendyj

Member
Joined
Nov 20, 2013
Messages
11
Reason
PALS
Diagnosis
10/2013
Country
US
State
ma
City
uxbridge
Hi. I was diagnosed with ALS on Oct.8. I have had two visits at an ALS clinic. I only get the hammers to the legs and the press down as hard as you can. I also was told anything I needed they would help me. Now I have been reading I have not had any of the breathing test or whatever else they test. I must say I have only a walking problem. The other thing that gets me is the clinic does'nt prescibe any meds except for ALS drugs.They want my primary to take care of all that. Now she hasn't had many ALS patients so that is throwing her under the bus. She is willing to do it but I think it is weird of the clinic. I also got in touch with the MND nurse who had said she could help me get equipment. I asked for help in getting a wheelchair ramp. Guess what I had to buy one.I have been stuck in the house since Thanksgiving. So I am now thinking either I'm nuts or they are incompetent. I also have to add at my last appt. I had to wait over two hours. Ok rant is over thank you if you read all of this.
 
It is very frustrating trying to coordinate all the doctors, and who does what for which thing. So I totally understand what you are saying about the primary doctor and the clinic. Maybe it would be good the next time you go to ask the clinic what specifically of your care that they are able to do. We currently have 3 doctors. The primary doctor is for general illness and diabetes. The pulmonary doctor is for the ventilator and lung function. The ALS clinic does everything else. With all the recent laws and restrictions on the pain medications, many doctors are "afraid" to over rule each other. What I have found best is when the doctors all work for the same medical system. Then your records from each doctor can be seen by the other and they are more comfortable with crossing over to each other. When they work for different health systems, they are very cautious to step on each others toes, or over prescribe pain medication.
As for having to buy the ramp. Try the local ALS associations, They often have loan closets that have things such as the ramps. In general, any modifications to the house, were not covered by the health insurance, so we had to build, or borrow ramps and modify our bathroom and the doorways ourselves. The ALS clinic really couldn't help with that, but they were able to set up an appointment with a occupational therapist to come to the home to see what is needed. Beware, always ask if the clinic is going to cover the payment for the therapists, or if your own insurance, or out of pocket has to pay. I have been surprised with many bills over the years.
Hope the advice helps.
 
IS this a new multi-discipline clinic, PT, OT, DIET, BREATHING, SOCIAL If not look for a multi-discipline clinic in your geographical area. I attend one every 3 months, a 3 1/2 hour drive one way. beneficial, yes
 
Thank you for your replies. I think part of me resents that here I get that terrible news and no one is taking care of me. I am so frustrated all around. I thought at least at the doctors I would be taken care of. But I don't feel that I am. I have seen my doctor at the clinic 3 times and It is always next time you come. I think I will quit the clinic and just see my primary. As far as the Ramps the MND rep that I saw I think is also working with the ALS clinic so she should have been able to help me.
 
WENDYI At the clinic you only mention doctor. What other disciplines do you see?
 
I am seeing one Dr. and sometimes his resident. Last time he had another neuro with him, but that is it.
 
Hi Wendy
It does sound like you have not been offered what is generally considered an ALS clinic visit. You go and see in one day a series of specialist services, ot, pt ,pulmo testin, social work and or MDA rep and a clinician ( neuro or neuro np) is that right. Seeing the neuro is of course important but a well run clinic can help with a lot of issues and seems to be what you are missing. I think you go to UMass? While I find it incredible that they do not have an ALS clinic I could not see mention of one on their webs ite. Ask them about it, if they do not offer such a service you might consider heading to MGH if possible. I know they have multidiscipline clinic there.
 
NikkiJ
Yes I go to UMass. It is a ALS Clinic and I am very surprised at the lack of treatment I have received. I am glad though that it's not my imagination that something is wrong.I am going back in Jan. and I will be more questioning about my care. I am so not impressed by the care so far. Thank you for your input.
 
I see 6-8 different doctors at my clinic in Charlotte
 
okay, is there a difference between ALS Clinic and Multi-Discipline ALS Clinic. are they two different types of clinics
 
I would have thought they were the same thing in the US but I am puzzled that Wendy is told clinic and sees only her physician.
 
Wendy,

before you jump ship I think you need to call and talk to a patient care coordinator about your care. Ask them why you are not seeing multiple disciplines at a visit. if they don't offer it, then call the ALSA for a referral to a different clinic. In my opinion, the neuro is the least important medical field you see at a clinic visit. They should be making your life easier, not more stressful.
 
Thank you all I am so confused. I will Talk to someone before My next vist to the clinic. I just want to live as stress free as possible. I feel like I'm a whiner, but you have made me feel better. thank you.
 
Hi Wendy,
Your experience at the ALS Clinic has me wondering. It is not what I encountered at my first Clinic. We can only go every 6 months but, we (my wife/caregiver) and I saw a PT, OT, speech therapist, social worker, respiratory person and a Neurologist. I would suggest that you get prescriptions from you Neurologist. I have had no problem doing that and he is very prompt doing that. we live in an area where ALS is handled by the MDA. they have been very helpful getting help with voice banking and working with OTs to help be be more independent. It would also be a good idea to register with your local ALS association or who ever handles that in your area. Support groups for ALS are also a great resource for information because you will meet people who have been where you are now and thus may have information that you will find helpful.

Rick
 
When my husband went to Texas Neurology at Bailor in Dallas he was only seen by the neurologist and was given an EMG to confirm his original diagnosis. He was not seen by any other discipline in 6 weeks even though he had messaged his concerns. He felt like he was basically told "you have ALS, go home and get you things in order to die. ' We were in the process if him immigrating to Canada so I went down and picked him up. It took over a month to get that appointment, and I was not impressed with his after care.
Once in Canada her saw in one week what would be his primary care physician, who referred him to an excellent neurologist, that he saw a week later. Another EMG was done, and he also confirmed an atypical ALS, then referred him to a physiatrist to deal with his physiotherapy, splints and occupational therapy care. She called the very next morning and would see us in 3 days. He was seen that week in our home by an occupational therapist, and we had a call from the ALS society of BC, to arrange needed equipment, which was delivered to our house in 3 days. The ALS society is centered 300 miles from where we live so I was absolutely amazed. My husband did not have BC medical, but the ALS society covered the costs knowing this. They said that ALS knows no borders, so they didn't care. My husband was blown away by his care and the compassion that he was shown. He was starting to believe that he could live with ALS rather than die from it. The physiatrist gave us her own personal cell phone number, and calls regularly to see how we are doing. My husband us a US veteran, so has 100% coverage for his equipment, so when we want something that is not supplied or available through the ALS society we go to Seattle and they take care of it. The first time there he stayed for a week and saw a multidisciplinary team, and had everything from dental work, hearing tests, pulmonary function, etc done. The VA system closely resembles the Canadian health care system, except that his equipment is paid for.

It has been a lot of work, but we are blessed with the best of care and equipment, and it makes me angry and frustrated to hear what others are having to go through. Being in the medical profession is definitely an asset and I can't imagine how intimidating this all would be for those that are not, and that is not right.
 
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