Trouble with diagnosis

Hello, everyone. I am having much difficulty getting a diagnosis. I have gone through an EMG and nerve conduction study which showed that I have mononeuritis multiplex. I had multiple blood tests as well as a spinal tap to see if I had any of a number of diseases but nothing came up. I even had a round of IVIG treatment which gave me a migraine every morning and made me fatigued. Finally, my doctor, a neuromuscular specialist, decided I was to get a nerve biopsy and take out part of the muscle in my leg. Done. Of course, since mine is an autoimmune disorder I got a horrible infection around the suture sight. So finally, finally, the results come in. My doctor is expecting nerve vasculitis since nothing else came back positive. But when she reads me the results, which said “axonal neuropathy” she says that’s not a diagnosis and, since she is now counting on a vasculitis diagnosis, she is going to get the slides from the biopsy and look at them with her neuropathologists. She told me this morning that she was still looking for vasculitis, and that mononeuritis multiplex is an axonal neuropathy. Personally, I don’t know what to believe. When I looked up axonal neuropathy it said it was linked with Guillain Barre syndrome, but she is still holding out for a vasculitis diagnosis. I just want to know what’s been wrong with me for the last year and a half. Does anyone know whether axonal neuropathy is indeed the same thing as mononeuritis multiplex, or is it possible that my doctor is discounting Guillain Barre syndrome? Just curious. As the weeks and months go by my muscles are atrophying to the point where I cannot write anymore. I use speech recognition software because I cannot type anymore. I want to know what I have…

I strongly urge you to see a good neurologist for another opinion, before you are totally paralyzed. Axonal damage is caused by an underlying neurological disease that must be treated. I have axonal damage from CIDP. I could say a lot more on this subject, based on my own similar experience, but I’m not going to presume to give you medical advice, beyond saying GET ANOTHER OPINION RIGHT AWAY. Don’t you have a primary care physician to help you with this? Most PCP know who the best neurologists in their area are.

Hey, SSandra. If only it was that easy. I saw 6 neurologists before deciding to get a neurologist at the 2nd ranked hospital in the country. The first neurologist I saw said she would treat me but I should really see a neuromuscular specialist, who I am now seeing. I am just tired of searching for a diagnosis and not getting one. I feel like I am in good hands, but no one seems to know what is wrong with me. It’s frustrating.

Are you actually receiving any treatment? What is being done for you?

Hey. I had one week of IV IG treatment and since my arms and hands are atrophied I go to physical therapy twice a week. The IV IG treatment was back in April. My doctor wants me to go for more extensive IV IG treatment though. Since I posted that first post I have yet to get a diagnosis…

When I had Nerve biopsy it confirmed CIDP diagnosis. I’m sorry that it didn’t give you the diagnosis you were hoping for.
The results you discussed sound like cidp. If you went to top neuro without success at a diagnosis, you should try another Neuro on one of the centers of excellence in the gbs/cidp international society. Cidp is extremely rare and even top neuros don’t get it. God bless!

I don’t know where you live, I live in Franklin, Pa and I went to at least 2 neurolgists, and a hospital for scans and finally the last doctor sent me to Cleveland clinic. I had the nerve and muscle biopsy and said my nerves are dead. Doctor sent me to cleveland clinic. They did a nerve test, and so much blood work. I was in so much pain and could not balance. I was 73 at the time, this was about 2014. I was digging and laying patio stones and that night I could hardly move the pain was terrible. My b/p went to 240/160, I should have went to the hospital. I went to Pittsburgh to a sit down mri because I could no lay down. They said that I had a broken vertebrae, but couldn’t tell when it happend, but I could feel a lump in my bra area. infact I could not wear a bra for a long time. After over a year and a half I got some ivig treatment. I don’t know if it helped or not, I just didn’t want to get worse the doctor said I would be in a wheel chair. My hands are numb and feet and part way up my leg. I just think its nerve damage from eating so much sugar, my dad was a diabetic and my grandmother and my aunt and my brother. I don’t have good co-cordination of my arms to do certain things. Like putting a key in a keyhole. I know exactly how you feel. If you can go to Cleveland clinic or mayo clinic. I pray you get some help. Good luck and God Bless.

I said to my neurologist I don’t think doctors know enough about this CIDP and he said they don’t. I walk with a cane when going anywhere, but at the house I don’t. I can cut a little grass with a push mower, but then I suffer with really muscle spasms around my middle front and back. When this happened, I could not stand the pain around the front and back I was like swollen everywhere. I put on 4 inches around the middle. My sternam hurt around my waist hurt so badly. My lower back hurts still so badly, I went to Transfer Pa and got like a nerve block of 3 shots in a series 3 times. Didn’t help me. I have to sit when it hurts. I can’t take pills, I did rehab twice to strengthen my core muscles. I get so depressed, my hands are so weak and drop things. I took a pizza out of the oven and dropped it on the floor. I wish there was something to help. When you are going for ivig treatments, the nurse there said drink lots of water days before and during so you don’t get a headache. I know the one time the young nurse sped my iv up and my face must have gotten all red. she said are you ok. She slowed it down. If I get warm I have rosacea and my face gets red. Drink lots of water.

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Hello. Thanks for the support!

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One round of IVIG isn’t going to help anybody. It has to be ongoing treatment. I receive 5 IVIG infusions in every 4 week cycle, and I’ll be on it for the rest of my life.

Treatment protocols don’t require lifetime infusions. I stopped my IVIG infusions after 4 years of infusions. My progression stopped and so I stopped IG. While attending a CIDP/GBS conference in San Antonio one year, there was significant discussion of coming off treatment when progression stops. As to when to stop, that’s a difficult decision.

Hi, I am a similar situation, I am 61 (male) and have been dealing with the numbness and weakness for almost two years. After being hospitalized in September, I started IVIG with no help at first and then I was on 60mg daily of prednisone which I began tapering to 15mg, and in October I had 5 days of IVIG and by the middle of the following week I felt like was getting much better, it stayed that way for three weeks and I started getting worse again, I went in for another IVIG at three weeks and did Ok for two weeks and by the time I got to my next treatment at three weeks, I have been going downhill and even since that treatment I have not improved. I get another infusion tomorrow but I am getting confused as well. A comment about the axonal damage, I had another EMG a few months ago and it came back showing axonal nerve damage (a year earlier it was a borderline study), the confusing part was this test was done by my in network neurologist, when I took the results to Loma Linda, the neuro-muscular doctor there told me that because I can walk on my toes and heals that it was not consistent with the study…phew, what do you do? So I have put in and am waiting for an appointment with a center for excellence (UC Irvine) for yet another opinion. I was also sent to a rheumatologist where they discovered I have a very low level of SSA, (1,7) which is positive for Sjorgrens syndrome, so based on this assumption I have started Cellcept which I began a few days ago. So now I am on cellcept, prednisone (10mg) and gabapentin for the assumption this is an autoimmune neuropathy but as for now, no real relief. However I will say that I was wasting away there for awhile and was down to 173 lbs, with the prednisone I am up to 200lbs, all in about 7 weeks. I am still wondering if at the end of all this its could be MS, seems like it is a very difficult thing to diagnose these disorders for sure, best to you.