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In need of advise for upcoming Doc visit....

Guest Julia59

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Guest Julia59

Hello all!!!

I hope you all had a nice mothers day. My family and I celebrated mothers day, my nephew David's birthday and my mother and I, who's birthdays are next weekend. WE celebrated early because we planned a 25th anniversary party for my brother Joe and his wife Debbie next weekend---they are also renewing their vows. We had way too many sweets, and I found that I am not the sweet tooth I thought I was as I could barely eat a sliver of the dark chocolate rasberry Chocolate cheese cake. We just had a lot of junk food around.

I think one of the reasons I lot my sweet tooth is a virus I recently had. I have had an increase in symptoms the last several months, but especially the last few weeks. As I have babbled on before----I have all these upper spine issues and the chiari malformation with cervical/cranial instability. WEll along with the virus, came a wicked cough after the virus moved to my chest. I refused to call my PCP about it as I was afraid he would put me on antibiotics----because I had the old familiar green stuff----sorry---so grosse I know.

Well the wicked cough played havoc on my upper cranial issues---beating the you know what out of my neck and head. I don't know if you all remember my post about the lump in my throat, but at any rate I finally e-mail the Chiari Doc in New York because I was getting a little worried. I can't even change my position in bed at night without the ligaments in my neck popping, and the bones popping as well. I still don't know if my POTS symptoms are related to my chiari and cervical spine stenosis issues, but all symptoms are getting worse. The overall weakness is incredible----or shall I say unbelievable.

I'm sitting here with my head in my hands wondering how to tell you everything that has been going on----and I keep correcting my typing errors as I always have trouble with coordinating my hands. It's too much.

My issues are somewhat different that typical POTS. It feels more like MS.

My bowels don't work without taking something to help

Excessive weakness and tired all the time

memory getting worse

more irregular heart rates/palpitations/flip flops---quivering sensations

Of course more pain---an obvious part of chronic spinal problems and chiari realted issues.

numbness in arms and legs/feet

vision problems---like i'm wearing dirty glasses

tremors inside my body if that makes any sense

low base humming in my lower head---constant

ear pain

balance problems

near syncope

swallowing difficulties that are getting worse by the day

I must say the overall weakness is the worst symptoms. I'm not able to keep up with my 78 year old mother in law. I was jealous of her yesterday as she just scooped up my Son's girlfriends daughter and held her. When I try to hold on to her I pay a dear price-----I'm just to weak. It's stupid---plain stupid---I can't even open up the door from a store entrance. Pushing a grocery cart sends me reeling. All my issues seems to be worse upon exertion except for the digestive issues. Unlike a lot of you my symptoms are much worse at night. Mornings are better for me. I guess you could compare the way I feel to being hit square in the middle of your back with a big log and having the wind knocked out of you all the time.

Ok----right now I need to get to the point. Since I have given you a good picture on my deep pots hole I need to tell you what i'm doing about it.

A while ago I tried to find a good neurologist to work with Dr. Bolognese in New York. Well it turns out that this new so called neurologist is blowing the whole chiari thing off, and wants to send me to another neurosurgeon for yet ANOTHER opinion. This is common for a lot of neurologists---even neurosurgeons to blow off even the most serious chiari cases. As with POTS, the same goes for chiari, and chiari related conditions, if it's not cut and dry and easy to figure out, the doc blows you off.

WEll I go to the new neurosurgeon on the 18th---next Wednesday! I'm sure the notes he received from the "blow off" neuro doc is chock full of bull roar. I won't even have a chance to explain my case before this new Doc blows me off too.

I am supposed to take all my MRI's, C-scans, blood work, medical records ect to him.

How do you all suggest I approach this lastest venture as I now feel like i'm running out of juice to fight these Docs?

Tomorrow I have to have another MRI on cervical spine---concentrating on C1,C2 and C3 taking thin cuts, and then a fiel view through the mouth. This was ordered by Dr. Bolognese as he was concerned about my latest e-mail about the lump in my throat.

Both Dr. Grubb and my PCP were notified about the neurologist who is blowing this off, and they both support me and offered some advice.

I'm sorry to make this so long, but so much has been going on, this doesn't even explain it fully. The depression from all this is crippling.

Also, and advice on how to face the SSDI psychiatrist?----joy, joy, I get to see him on the 24th----so he can lie to the SSDI adjudicator too.

This has been so hard to type----good thing for you as this means i'm going to end this rambling mess, because I can't go on.

You all take care,

Julie :0)

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Hi Julie,

I am so sorry that these docs keep giving you the run around. I've gotten some of it too but I am still at the begining of learning. At least you have some documentation and few doctors that do support you. I am glad for that.

I too have a couple of important appointments this week. One of the things I have done is prepare a packet with a Table of Contents, An Overview of my health history, a list of my symptoms and the medications I have tried. Then I have included copies of labs begining with the 2 TTT results, Cardio, Neuro and blood work. It's all listed in the Table of contents.

I don't know if this will help, my first appointment is tomorrow with my primary(tues) and my second is Thursday with my neuro. But maybe this idea will help you too. I got this idea off this forum, hmmm... I think it was Angela (??) that suggested using this techinique for getting into Mayo.

Let us know how your appointments go.


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Julie, I am sorry taht you are having such a hard time. I wish I had some advice to give you. You rspinal problems sound very complex. I have not kept up with the post so I do not know what is going on with your disability application. I know that when I was appling I was told that I would get it for POTS and would have to get it on symptoms such as depression. I know others who got it for depression which I was willing to do even though the depression was due to my POTS. Well I ended up getting SSDI for myelopathyor cervical stenosis. Maybe that is a diagnosis you could get it on with all of your spinal issues. If I got it for myelopathy...I do not think you should have much of a problem getting it with some persistance. I was very blessed to get it on the first try.Thinking of you. DawnA

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Guest Julia59

Thanks Roselover,

I do have a package of medical records, and copies of MRI's, CTs ect, but a table of contents would be good for the neurosurgeon to access any information more quickly relative to his needs in giving his own assessment of the situation.

I just feel very tired, and not in the mood to have to deal with another dismissive Doctor. Yes, I do feel like i'm running out of juice with these Docs, but if I have to, i will stand up to him. It's hard though, especially if your having a bad day.

Thanks for the SSDI information Dawn, that will help me with my case, as I know I have that diagnosis somewhere in my mess.

Thanks again,

Julie :0)

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Hi Julia,

When I see a new doc I go in with an open attitude that he will help me. I show my positive tests results and ask what he can do for me. If he want to help I continue with him, if not I say thank you and I leave. I don't have the energy to fight and I don't want to waste myself getting upset with those *((& docs.


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Guest Julia59

My fear is what this guy can do to my SSDI case. I'm too sick to work, and that's just the plain facts. I wish it were different. I put my 25 years into the work force, and I am having trouble with them accepting that these health issues I have are disabling. Thanks Ernie------- :(

Julie :0)

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