I'm very concerned for my boyfriend. 23 years old male.

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irinBerkley

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Hello guys,

I'm writing here because I'm very concerned for my boyfriend, he is going through something very weird and I need guidance as he is suffering. He has Ankyolising spondylitis and is in pain and has muscle twitching from few years and widespread muscle pain and pins and needles.

He was scratched by a ferral cat December 2022 and got a lot of vaccines. After the scratch he developed herpes zoster aka Shingles near the scratch, and was in a lot of nerve pain. The symptoms progressed and he got sore throat and weakness in the arm. The weakness spread to the right leg from the right arm and them his right side of the face for very short time. There is a lot of muscle twitching and intense nerve pain. In the places where there is weakness. His throat is not better and he has trouble swallowing, pain when breathing and has saliva and mucous from the sinuses.

  1. He had clean brain MRI and his cervical spine is effected by his autoimmune disease but there is no issue that can cause those symptoms.
  2. He is anemic with genetic type of anemia. Thalassemia
  3. He had NCS which showed abnormality and issues with his spinal root nerves. In his right leg and right arm.
  4. He had emg of the arm for a very short time which again showed spinal abnormality from drs words, but he needs a whole new emg for 3 limbs.
  5. The neurologist saw slight muscle atrophy in his right leg.
  6. Doctors noted hyper-reflexia in all his fingers and limbs.
  7. His Creatinine is low.
He has weakness in his whole body but the right side is worse. His painful throat is bothering him so much8 for more than 3 months. He feels his right leg is weak but he can climb stairs and lift it. His hand and fingers are effected and he has nerve pain and spasticity. It's been more than 90 days from the start of symptoms and I'm lost and I want to help him. I believe he is scared too but he doesn't show it as he is trying to act manly. We have been to two neurologist, his rheumatologist and two infection disease doctors they are baffled and don't know what to do as he was supposed to get better. One of the neurologist suggested that MND need to be excluded and we needs to repeat the EMG and cover more limbs. We are in his home country in Eastern Europe and they don't have a lot of specialists in neuromuscular diseases.

Do you have any suggestions and guidance? Doctors are saying he is too young for anything serious, but I know those disease can effected young people.
 
I would be wondering about cat scratch disease vs. shingles. It is more common in immunocompromised people. Was he tested for the bacterium that causes that (Bartonella henselae)?

Shingles itself can cause long-term damage, esp., again, in immunocompromised people, and I don't know what antivirals he had to address it. The fact that there were brief facial symptoms also suggests that possibility. I don't know what would cause shingles at a bite [cats cannot spread it], other than coincidence, which is possible, but unusual.

I would also be looking for a second opinion how both his pre-existing conditions are being treated, so a hematologist as well as the rheumatologist.

I don't think he has ALS, but I think everyone would want to rule out a treatable infection that could get worse. Honestly, I would be heading to an infectious disease centre in the nearest country that has a good one, or trying to work via telehealth. There may be more lab work that could shed light on what viral and/or bacterial infections are active right now.
 
Hi there, thank you for your answer.

He has been tested for the cat scratch disease but it was negative and it was after long antibiotic treatment. He had antivirals but not on time and they were oral. He started a treatment for his autoimmune with biologic. The medical professionals are saying his symptoms can't be caused by ankyolising spondylitis the other drs says that shingles is only localised symptoms. We will test him again, but I'm so worried for him, I'm truly terrified as he is not getting better and it stays that way. The thing that worries me is that it spread of symptoms from his hand to his leg and it was weakness there and then pain, stiffness. He visits psychologist, and it helps a little but he is manly in bed and I assume he is also stressed as he doesn't eat that much. His family is not supportive.

We will go to the best EMG Dr. in the country and we will perform it but it will take some time. In the meantime we can't constantly (in contrary of what I want) visit doctors as we are not great with money, we tried to do online consultation and we are still waiting.

We can try to go to UK where my family is, but this will also take time. The thing that scares me is the uncertainty and the long process. He has a grandfather with pancreatic cancer to care for but he can't. Can bacteria and viruses cause such symptoms? What makes the Dr thinks that this might have to do with MND? His limbs fall asleep easily and there is pain when trying to walk. His arm emg didn't show anything special except the spinal issues.

I want to help him.
 
There are many disease-causing viruses and bacteria that can affect the nervous system. If an infection has been ruled out, I would just want to be very confident about ticking that box from what you have said.
 
Hi there, I'm very concerned for him. He is having progressive throat issues, he is weak and in pain when walking particularly on the right side. His throat is so bad he is not eating much only drinking. I know you guys can't help, and I'm devastated I can't help him too. Not sure what to do what doctors to visit and how to proceed. His EMG is on the 25th this month. He has breathlessness. What testing do you suggest what blood tests, scans? What kind of drs should he visit? I'm not sure how can they fully exclude infectious diseases. When I try to search his symptoms rabies comes up, but couldn't be possible as 100 days has passed from the first symptom, right? I'm very confused and I can see that he has some of those characteristics, doctors are not taking him seriously due to his age.

What do you suggest as a experienced people?

He will have an appointment to a neurologist and endocrinologist to a nearby clinic tomorrow and he will see the same infectious disease Dr who knows the situation from January this year. What questions should we ask the Doctors?

I know ALS doesn't discriminate and anyone can be effected. The full emg will be on the 25th of this month and he will get a consultation from the same Dr.

He took pregabalin and baclofen now and his throat and body pain is better. I value your advice and apriciate your time!
 
I'm so sorry he and you are going through so much. Nobody on this forum is a doctor and, since your appointment is tomorrow, let the doctors take the lead. Make sure you take records of any tests he has and write down all your questions.

Ask the doctors what differentials are on the table and why. Since infections, both bacterial and viral as well as autoimmune concerns, ask them if a lumbar puncture would potentially reveal anything going on.

Make sure you let them know that the pregabalin and baclofen helped. It might give them clues toward further treatment.

Let us know what the doctors plan after you see them tomorrow.
 
I would ask if blood cultures have been done.

I would bring a one-page written summary of why he was seen in Jan. and exactly what features have progressed or are new since then, with specific examples, like begins to breathe heavily after one block of walking, or whatever is the case.
 
Hi Kim and Igelb, thank you for your messages. He will have his emg in a week, his previous emg was shared with US emg specialist. She commented that his NCS was normal but the F-wave was not and that on the arm emg spontaneous activity was noted on one muscle. He has weakness and the throat is bothering him so much it hurts and he has so much nasal secretions. I suspect that everything happened after he had some minor head injury September 2019 his chronic issues started from there specially muscle twitching and the shingles infection to aggravate and make the disease progress. He is currently having bulbar symptoms and I'm afraid he won't be from the long lasting cases, I'm so scared of the whole situation. He can walk but it's not comfortable as he has pain. What else could possibly cause such symptoms?
 
Do you have any advice? How can we access treatment if diagnosed. I've been reading about stem cell treatment, is it worth it?
 
Stem cells? No.
please don’t jump ahead. He isn’t diagnosed
 
Hi,

Sometimes more than one thing can be going on and that muddies the waters. At this point, there is no MND diagnosis, so my suggestion is to wait and see if the EMG/NCS shows anything else.

Once you know what has been ruled out with the EMG/NCS, you can ask your doctors what's still on the table and what steps will be taken to come to a diagnosis.

I know how hard it is to wait.
 
Hi Nikki and Kim, thank you for your comments. Yes, he doesn't have an official diagnosis. He recently had breathing issue, and we did blood gas tests and it said most likely metabolic acidosis, which is great that this is not his respiratory muscles. He had emg and unfortunately no one told us not to take the daily medications, like Baclofen. I hope we didnt mess it up. His eyelids have started to twitch, his nerve pain is extreme. The next doctor is in 9 days. I'm nervous
 
Baclofen should not affect the emg portion. Dead motor neurons which is what they would look for for als are not revived by baclofen
 
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Just wondering how did a blood gas test end up being carried out? You say "we did" blood gas tests but I assume you don't mean you carried out / requested this yourselves. What was the breathing issue that caused a doctor to request blood gasses?
 
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Hi Nikki and Fjay, thank you for your replies! I'm so relieved that we didn't mess up the emg, it was expensive because it was carried out by a very skillful doctor. The results will be forwarded to our new neuromuscular doctor and we will know more in 9 days.

The blood gas test was carried out in a normal lab, blood taken from the finger. It was ordered by his normal neurologist. They explained that his results pointed out that it is more likely to be metabolic as the PH was in the lower end, and the pco2 and hco3 were low. He was breathing very fast and heavy and couldn't sleep for a couple of days. It's better now, but he is still having some issues.

I highly suspect that it was his kidneys as he is having issues with them! His pain is bad and the weakness is getting to his other hand, which is so fast!! We want answers but it's taking so long. He is trying to get distracted and is playing games, but I know he is worried. I will update you, once we have more information.
 
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