CIDP Concerns, Need a Neurologist in Philadelphia ASAP, HELP
March 30, 2017 at 7:06 pm
So, I posted before about having concerns about my GBS from childhood and thinking that I was having a CIDP problem. Well, things aren’t getting better. I tried bringing information about CIDP to my primary care physician and she looked at it for a few seconds and suggested I go to a sports medicine rehabilitation specialist. She was no help at all and barely read what I wrote or listened to my symptoms.
So, I went to Penn Hospital’s ER on 34th and Spruce in Philadelphia, because that is a Center of Excellence. My experience was horrible. I won’t get into everything, but they had a bunch of terrible Neurologists see me, who determined I was fine despite my CT scan having some kind of something on it. They were mainly concerned about me having a stroke and would not listened to my concerns about GBS or CIDP. They sent me home with a diagnosis of weakness saying that the results of my CT scan was “probably nothing” but that I should definitely get a MRI, which was scheduled for the ER but the head Neurologist cancelled it because I was so well put together.
I tried making an appointment with Dr. Mark Brown, but he is not seeing people until the middle of May, plus I already saw a Neurologist at Penn and she has to agree to a transfer of a care and so does my insurance.
I’m going to list my symptoms to see if anyone can help, relate, or anything. Or, knows a Neurologist with a quicker turnaround time. I am just getting worse day by day and obviously the ER is not going to help me. I am now using a rollator walker, as suggested by my Physical Therapist, who I see twice a week.
1. Heaviness in limbs
2. Weakness in limbs, worse on the right side
3. Extreme fatigue, especially after activity. It is not like anything I have ever experienced before. It just feels like I can barely move my limbs.
4. Muscle stiffness
5. Body aches/pains, especially when moving around
6. Pain in the legs, especially after walking
7. Occasionally, tingling in various parts of the body. This has calmed down over the last few days.
8. Unusual gait, where I drag my feet, but it is not like foot drop if I understand it well
9. Trouble grasping things. Ex) I cannot grasp my pills
10. Trouble going up and down stairs
11. Trouble walking long distances, and walking in general.
If you guys can think of ANYTHING that will help, I would appreciate it. I am at my wit’s end. I travel on public transportation everywhere and I am having a hard time getting around. I just started using the rollator walker today and it was a lot easier, but I still come home feeling like I ran a marathon. Even if you can just make me feel like I am not crazy, please respond.
Thanks so much,
March 30, 2017 at 7:39 pm
ER’s typically only care about urgent medical issues (like it needs to treated within the next 24-72 hours or you’re at risk of serious complications of death). They looked for something urgent (like a severely compromised vertebrae or Cauda Aquina). After that came back normal, they don’t care. They send you down the outpatient path.
What you need is an EMG, so they can see what’s going on in your limbs. They might also do an MRI to look for lesions (like MS). EMG is usually done by neuro but some PM&R/sports Drs also do them. They may be faster to get in, but if your EMG shows CIDP they probably won’t treat it (back to Neurology). You might want to play the odds here and schedule with the Neuro but see if you can find a PM&R/Sport dr who does EMG who can see you sooner… so that if it is showing up in the EMG, you’ve already got the results by the time you see Neuro. Getting CIDP positive EMG might also bump you up in line for getting into the Neuro.
But yeah CIDP sounds plausible so far.
March 30, 2017 at 7:45 pm
You may find some useful info in this forum thread:
You can also contact one of your local GBS/CIDP Foundation liaisons for referrals:
Rena Jo Gossard Altoona, PA 16601 (814) 515-2440 home (814) 650-7453 cell firstname.lastname@example.org
Barbara Anne Fowkes Doylestown, PA 18901 (215) 348-7515 email@example.com
Jennifer Musto Plains, PA 18705 (570) 235-1630 home (732) 771-3895 cell firstname.lastname@example.org
March 31, 2017 at 1:24 pm
Thanks for the speedy responses.
So, I had an EMG of my right leg and arm about a month ago before all of my symptoms got really bad. It was totally fine.
Because I need the MRI, I had to see someone at my primary office. Luckily, they scheduled me with someone else who may or may not be better, we’ll see. I see them on Tuesday.
Jim-LA, I am in contact with the Foundation’s volunteer for Philadelphia, but I will contact a liaison for some referrals and check out the thread.
These are both excellent replies. I feel supported.
This board makes me feel less alone. When I was calling my primary, he was so shocked that the hospital didn’t do a MRI like they were supposed to and that they didn’t keep me for observation when describing my symptoms. At least some people understand!
April 4, 2017 at 11:49 am
I, will give a recommendation, for DR Tabby.
DR David Tabby, DO
301 City Avenue, Phila PA, 19004
610 664 2584
I an just finished my first course if IVIG. Other than the severe Rash I got on the last infusions it went rather well.
They pre-treated with a steroid’s, in an attempt to limit the effects of the Rash. It was better for me, with the pre-treatment. as far as the Rash is concerned. I have had improvement’s in my hands and arms. My feet, the worse of the offenders. Is having less results. But I’m hopping for the best!
May 11, 2017 at 11:32 am
Thanks for the suggestions!
Dr. Tabby is the best! I highly recommend him for people looking for a doctor.
I got an MRI, it was normal. I saw Dr. Tabby today and he thinks I have CIDP.
Some symptoms got significantly better, New ones started, and Dr. Tabby decided to give me an EMG and also start me on IVIG. I am waiting right now to see if I can get the EMG today.
IVIG will start as soon as my insurance approves it, either under the diagnosis of GBS or CIDP.
May 11, 2017 at 2:02 pm
The way I am dealing with my CIDP, is I am either moving forward or not. Which means being proactive. This site is a wealth of knowledge. Hopefully you will get results with the IVIG. I had to do a lot to get my insurance to cover me. I was turned down on my first attempts. I then researched Aetna’s coverage. I found with a simple PDF being filled out. I was covered for one year. So don’t give up if you are turned down by your insurance. In my case they needed one more test result.
I Explained to DR Tabby that transportation is a huge problem for me too. He got me set up with an Infusion service so I only have to go to the office for my usual Examination’s.
Till you get setup with plan it seems daunting. But if you can keep moving forward you will get a plan in place and hopefully start seeing results.
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